Patient and caregiver perspectives on care coordination during transitions of surgical care

Patient and caregiver perspectives on care coordination during transitions of surgical care Abstract Care coordination for patients with chronic disease commonly involves multiple transitions between primary care and surgical providers. These transitions often cross healthcare settings, providers, and information systems. We performed a cross-sectional qualitative study to gain a better understanding of the factors that influence how patients and caregivers perceive care coordination during transitions of surgical care. Eight focus groups were conducted among individuals from three different U.S. states who had experienced an episode of surgical care within the past year. We included patients who had undergone major surgery for a chronic condition, as well as caregivers. We used Atlas.ti qualitative software and engaged in an iterative process of thematic analysis of focus group transcripts. After five-rounds of review, five main themes emerged that define chronic care coordination for surgical patients and caregivers: (a) Care coordination is embedded in the unwritten social con tract patients share with their surgical providers; (b) Patients expect all surgical and nonsurgical healthcare providers to be “on the same page”; (c) Patients are frightened and vulnerable during surgical care transitions; (d) Patients need to have accurate expectations of the processes associated with care coordination; and (e) Care coordination relies upon establishing patient trust with their surgical team and needs to be continually reaffirmed. Surgical patients and caregivers expect care coordination processes to involve informatics infrastructure, patient education, and information exchange between providers. Unfortunately, these aspects of care coordination are often lacking during transitions. These findings have implications for designing patient-centered interventions to improve coordination of chronic care. Implications Practice: Patients with chronic health conditions undergo frequent transitions for surgical care and experience poor care coordination when there is lack of communication, low levels of trust, and inadequate information exchange with their healthcare team. Policy: Efforts by policymakers to improve care coordination for patients with chronic disease need to account for frequent transitions of surgical care and the factors that define the care experience for patients and their caregivers. Research: Future research is needed to evaluate the impact of patient-centered care coordination interventions on the quality of care and outcomes for patients undergoing transitions of surgical care. INTRODUCTION Nearly half of all adults in the USA have one or more chronic health conditions that require regular healthcare utilization distributed among multiple healthcare providers [1]. It is well recognized that coordination of care services between different healthcare providers and settings needs to be optimized for patients with chronic diseases in order to achieve optimal clinical outcomes [2]. This challenge is considerable for the majority of adult patients who, within 1 year, see their primary care provider (PCP) in addition to multiple specialty care providers. A recent study highlighted this issue by showing that up to 95 per cent of elderly patients see some type of specialist annually, with an average of almost nine visits per year [3]. The need for surgical care is one of the most common reasons for adult patients to be referred to specialist healthcare providers. On an annual basis, nearly 30 per cent of all hospital stays in the USA will involve some type of surgical procedure [4]. Patients with chronic health conditions commonly need one of the wide variety of surgical procedures, either as a consequence of their chronic diseases or from unrelated processes such as trauma. Episodes of surgical care commonly require that patients transition between PCP and surgical specialty providers, who often practice in different care settings. Transitions between different healthcare systems may also be necessary in cases when specialized surgical services are only offered in certain hospitals with unique types of technologies or provider expertise. Surgical patients and their caregivers are at risk of receiving fragmented care during these types of transitions given that patients frequently transition from their personal PCP to surgical specialists who may not be as familiar with their chronic care plan and long-term goals of care [5]. Multiple strategies have been developed to help bridge these types of care gaps during transitions between outpatient and inpatient settings. Different care coordination models have been shown to be effective in reducing readmissions, particularly among patients hospitalized for chronic medical conditions [6, 7]. However, these strategies were not designed specifically for surgical patients, and it is not clear whether they improve patient satisfaction with care. Surgical care is unique in many regards and poses distinct challenges for patients during care transitions. As such, it is also uncertain whether these interventions address the issues and needs deemed to be important by surgical patients and their caregivers. In order to develop patient-centered care coordination strategies for surgical care, the first step is to understand the factors that influence how patients and caregivers perceive their coordination of care during transitions before, during, and after surgery. This includes clarifying the perceptions and experiences of patients as well as identifying the types of barriers and facilitators that influence the success of care coordination during transitions from inpatient to outpatient care, between hospital units, and between primary care to specialty surgical care. The aim of this qualitative study is to elucidate the challenges that patients and caregivers commonly experience during transitions of surgical care for chronic health conditions. METHODS Study design A qualitative study using focus groups was conducted to assess the experiences of patient and caregivers with care coordination during transitions across an episode of surgical care. Care transitions included those between primary care and surgical providers, transitions that occurred during the surgical hospitalization, as well as the transitions between outpatient and inpatient settings before and after surgery. We conducted an iterative process of qualitative analysis using an interactive model to identify emergent themes associated with surgical care coordination [8, 9]. Participants and settings Individuals with chronic health conditions who had recently experienced a major surgery as either a patient or a caregiver were recruited from community healthcare clinics in eight different locations within the Intermountain West, including urban and rural regions within Utah, Idaho, and Wyoming. This geographic distribution represents a hospital referral region (HRR) for tertiary surgical care [10], and participants were included if surgery had occurred in this region within the prior year. Participants were excluded if surgery was undertaken for traumatic or acute care conditions. Focus groups were conducted in community centers located in Salt Lake City, UT (three focus groups), West Valley City, UT (two focus groups), Evanston, WY (one focus group), Pocatello, ID (one focus group), and Vernal, UT (one focus group) in order to sample patients from different communities and sociodemographic backgrounds within this HRR. Rural communities were defined by as those with a population less than 50,000 [11]. A bilingual moderator led two focus groups in a community with a high percentage of Hispanic patients. Each focus group had a maximum of 15 participants. They were recruited using fliers posted in healthcare clinics, physician referrals, and media (television and newspaper articles). All types of surgical specialty care were included. A total of eight focus groups were conducted in order to reach saturation among a diverse sociodemographic surgical population [12]. Procedures were approved by the University of Utah’s Institutional Review Board. Procedures Data were collected between May and August 2014. Focus groups were used because group discussion is thought to result in a deeper, more relevant discussion of the issues. It is a socially based experience where individuals can describe their views in the context of others and is an opportunity to observe group sense-making. Focus groups are particularly useful in identifying group norms or cultural values, or when there is no right answer and the purpose of the investigation is to sample the range of perceptions [13, 14]. Factors associated with the validity of focus groups center around the degree to which the group is representative and diverse. Our selection and recruitment process was committed to creating diversity of surgical patients and caregivers from different socioeconomic, cultural, and geographic backgrounds within the HRR that would have different experiences with care coordination during transitions. Semistructured interviews were conducted by the moderators using a prepared script (Appendix 1) and a structured process for the interview. Methods suggested by Krueger and Morgan [15, 16] were utilized, which included the use of picture drawing and rating scales to stimulate discussion. The emphasis was on creating a “focused conversation” where individuals would feel comfortable to share their surgical experiences and to explore the topic of care coordination. Each focus group took less than 1.5 hours (median 1.35 hours), and all discussions were tape-recorded and transcribed for later analysis. Questions were used as a framework for discussion, but probes steered the conversation as appropriate. Data analysis The transcribed records were analyzed using ATLAS.ti (Berlin) [17] qualitative software according to the procedures adapted from Krueger and general qualitative procedures (see below for description of the analysis) [18, 19]. The research team (n = 3) initially independently reviewed the transcripts, highlighting beliefs, attitudes, norms, beliefs, and areas of tension or other emotional content. Then, the group met, discussed the areas identified, and gave the text a classification or “precode” according to the directions recommended by Patton [8]. The text was then reread by each member and again independently reviewed for redundancy, new perspectives, and overarching constructs. The code book was further developed with each round of iterative review. The third review and discussion aggregated the new additional precodes with a second level of analysis to map relations between the codes and identify any emerging theme until data saturation was achieved. The next two discussions focused on aggregating and combining the precodes into meaningful constructs by reviewing the associated quotations or texts for the fourth time. These constructs were refined through an iterative process of discussion that was the first stage of a formal content coding protocol. A final review by the research team identified the themes and subthemes. RESULTS A total of 114 individuals attended one of the eight different focus groups. The characteristics of focus group participants are shown in Table 1, stratified by 90 (79%) patients who had undergone a major surgery experience themselves and the remaining 24 participants who were patient caregivers. This cohort included patients and caregivers from Hispanic backgrounds (20%) and rural communities (25%) who had undergone a broad range of surgical procedures for different chronic health conditions (Table 1). In addition, focus groups included three patient–caregiver dyads. Table 1 Characteristics of surgical patients and caregivers who participated in focus groups (N = 114) Variable Surgical patient (N = 90) Caregiver (N = 24) Age, mean (SD) 62.5 (10.5) 63.2 (9.7) Male gender, n (%) 52 (58) 10 (42) Hispanic race/ethnicity, n (%) 19 (21) 4 (17) Rural, n (%) 21 (23) 8 (33) Type of surgery, n (%)  General surgery 21 (23) 6 (25)  Orthopedic surgery 28 (31) 4 (17)  Neurosurgery 7 (8) 2 (8)  Cardiothoracic surgery 22 (24) 10 (42)  Vascular surgery 6 (7) 1 (4)  Other 6 (7) 1 (4) Chronic health condition, n (%)  Cancer 28 (31) 8 (33)  Ischemic heart disease 22 (24) 10 (42)  Degenerative joint disease 28 (31) 4 (17)  Peripheral vascular disease 6 (7) 1 (4)  Other 6 (7) 1 (4) Variable Surgical patient (N = 90) Caregiver (N = 24) Age, mean (SD) 62.5 (10.5) 63.2 (9.7) Male gender, n (%) 52 (58) 10 (42) Hispanic race/ethnicity, n (%) 19 (21) 4 (17) Rural, n (%) 21 (23) 8 (33) Type of surgery, n (%)  General surgery 21 (23) 6 (25)  Orthopedic surgery 28 (31) 4 (17)  Neurosurgery 7 (8) 2 (8)  Cardiothoracic surgery 22 (24) 10 (42)  Vascular surgery 6 (7) 1 (4)  Other 6 (7) 1 (4) Chronic health condition, n (%)  Cancer 28 (31) 8 (33)  Ischemic heart disease 22 (24) 10 (42)  Degenerative joint disease 28 (31) 4 (17)  Peripheral vascular disease 6 (7) 1 (4)  Other 6 (7) 1 (4) View Large Table 1 Characteristics of surgical patients and caregivers who participated in focus groups (N = 114) Variable Surgical patient (N = 90) Caregiver (N = 24) Age, mean (SD) 62.5 (10.5) 63.2 (9.7) Male gender, n (%) 52 (58) 10 (42) Hispanic race/ethnicity, n (%) 19 (21) 4 (17) Rural, n (%) 21 (23) 8 (33) Type of surgery, n (%)  General surgery 21 (23) 6 (25)  Orthopedic surgery 28 (31) 4 (17)  Neurosurgery 7 (8) 2 (8)  Cardiothoracic surgery 22 (24) 10 (42)  Vascular surgery 6 (7) 1 (4)  Other 6 (7) 1 (4) Chronic health condition, n (%)  Cancer 28 (31) 8 (33)  Ischemic heart disease 22 (24) 10 (42)  Degenerative joint disease 28 (31) 4 (17)  Peripheral vascular disease 6 (7) 1 (4)  Other 6 (7) 1 (4) Variable Surgical patient (N = 90) Caregiver (N = 24) Age, mean (SD) 62.5 (10.5) 63.2 (9.7) Male gender, n (%) 52 (58) 10 (42) Hispanic race/ethnicity, n (%) 19 (21) 4 (17) Rural, n (%) 21 (23) 8 (33) Type of surgery, n (%)  General surgery 21 (23) 6 (25)  Orthopedic surgery 28 (31) 4 (17)  Neurosurgery 7 (8) 2 (8)  Cardiothoracic surgery 22 (24) 10 (42)  Vascular surgery 6 (7) 1 (4)  Other 6 (7) 1 (4) Chronic health condition, n (%)  Cancer 28 (31) 8 (33)  Ischemic heart disease 22 (24) 10 (42)  Degenerative joint disease 28 (31) 4 (17)  Peripheral vascular disease 6 (7) 1 (4)  Other 6 (7) 1 (4) View Large The process of identifying themes involved a content review of the quotations involved under the different constructs (above). The constructs were then aggregated into higher level units of meaning. The result of this content analysis resulted in five main themes to describe patients’ experience with care coordination during transitions of care, which each included several subthemes (Table 2). Table 2 Themes and subthemes that define chronic care coordination for surgical patients and caregivers Themes Subthemes Care coordination is embedded in the unwritten social contract patients’ share with their surgical providers Abandonment and feeling of neglect during transitions of care Expectation for personalized care coordination Patients expect all healthcare providers, including surgeons and primary care providers, to be on the same page with each other during care transitions Expectation that information flow is rapid, automatic, and seamless between healthcare settings Expectation that all members of the care team have access to same information within the medical record Patients are frightened and vulnerable during surgical transitions of care Fear of dying during surgery is prevalent and affects care coordination Surgery is a foreign experience Patients have a need to have accurate expectations of the care processes associated with coordination of their care before and after surgery Attempts by patients to prepare and assert control during care transitions are often not supported Patients need detailed information about their care plan Care coordination relies upon patient trust with their surgical team and needs to be established and reaffirmed throughout the process Experience of the surgical team Ability of a surgeon to put patients’ mind at ease improves care coordination Themes Subthemes Care coordination is embedded in the unwritten social contract patients’ share with their surgical providers Abandonment and feeling of neglect during transitions of care Expectation for personalized care coordination Patients expect all healthcare providers, including surgeons and primary care providers, to be on the same page with each other during care transitions Expectation that information flow is rapid, automatic, and seamless between healthcare settings Expectation that all members of the care team have access to same information within the medical record Patients are frightened and vulnerable during surgical transitions of care Fear of dying during surgery is prevalent and affects care coordination Surgery is a foreign experience Patients have a need to have accurate expectations of the care processes associated with coordination of their care before and after surgery Attempts by patients to prepare and assert control during care transitions are often not supported Patients need detailed information about their care plan Care coordination relies upon patient trust with their surgical team and needs to be established and reaffirmed throughout the process Experience of the surgical team Ability of a surgeon to put patients’ mind at ease improves care coordination View Large Table 2 Themes and subthemes that define chronic care coordination for surgical patients and caregivers Themes Subthemes Care coordination is embedded in the unwritten social contract patients’ share with their surgical providers Abandonment and feeling of neglect during transitions of care Expectation for personalized care coordination Patients expect all healthcare providers, including surgeons and primary care providers, to be on the same page with each other during care transitions Expectation that information flow is rapid, automatic, and seamless between healthcare settings Expectation that all members of the care team have access to same information within the medical record Patients are frightened and vulnerable during surgical transitions of care Fear of dying during surgery is prevalent and affects care coordination Surgery is a foreign experience Patients have a need to have accurate expectations of the care processes associated with coordination of their care before and after surgery Attempts by patients to prepare and assert control during care transitions are often not supported Patients need detailed information about their care plan Care coordination relies upon patient trust with their surgical team and needs to be established and reaffirmed throughout the process Experience of the surgical team Ability of a surgeon to put patients’ mind at ease improves care coordination Themes Subthemes Care coordination is embedded in the unwritten social contract patients’ share with their surgical providers Abandonment and feeling of neglect during transitions of care Expectation for personalized care coordination Patients expect all healthcare providers, including surgeons and primary care providers, to be on the same page with each other during care transitions Expectation that information flow is rapid, automatic, and seamless between healthcare settings Expectation that all members of the care team have access to same information within the medical record Patients are frightened and vulnerable during surgical transitions of care Fear of dying during surgery is prevalent and affects care coordination Surgery is a foreign experience Patients have a need to have accurate expectations of the care processes associated with coordination of their care before and after surgery Attempts by patients to prepare and assert control during care transitions are often not supported Patients need detailed information about their care plan Care coordination relies upon patient trust with their surgical team and needs to be established and reaffirmed throughout the process Experience of the surgical team Ability of a surgeon to put patients’ mind at ease improves care coordination View Large Theme 1: Care coordination is embedded in the social contract between patients and their surgical providers The relationship between patients and their surgeon is perceived to be a unique and unwritten social contract by the majority of individuals and guides their expectations for care coordination (Table 3). Specifically, patients who need surgery are uniquely dependent on their surgeon to “guide them” through the episode of care given that the process of undergoing each surgical procedure involves specific care processes and certain risks that include a “loss of self.” This dependency intensifies the need to have a relationship or social bond with the surgeon. This social contract includes assurances that they will be cared for without abandonment and be given personalized care. These feelings and expectations may be implicit and go beyond the usual social contracts with other healthcare providers because of the degree of dependency and risks associated with surgery. Care coordination strategies must account for these unique expectations of patients and their caregivers during transitions before, during, and after surgery. Table 3 Illustrative quotes Care coordination theme Illustrative quotes Care coordination is embedded in the social contract between patients and their surgical providers I didn’t feel like I was able to establish a relationship with my surgeon before the procedure. He saw me one time and then I saw his partner. The appointments were very short and I couldn’t get all my questions answered. I felt rushed. Perception that surgical and nonsurgical providers are all on the same page during care transitions I’d like to see better coordination between my primary care doctor and surgeon. Every time I visit my PCP, they don’t seem to have any records from my surgeon. I end up getting the same studies repeated. Vulnerability of patients during care transitions I was really scared because I had never been exposed to surgery or any other type of experience like this before. I didn’t even know if I would live through the operation. Patients need to have accurate expectations of care coordination processes during transitions Knowledge is power. The more I know the more control I have, the easier it is for me not to freak out. With increased information I feel I can interact better with my surgeon. Trust established with surgical providers is central to care coordination during transitions I didn’t feel trust or confidence in my surgeon. He just came in and said we are cutting you open and left. I wasn’t given any explanation or choices. Care coordination theme Illustrative quotes Care coordination is embedded in the social contract between patients and their surgical providers I didn’t feel like I was able to establish a relationship with my surgeon before the procedure. He saw me one time and then I saw his partner. The appointments were very short and I couldn’t get all my questions answered. I felt rushed. Perception that surgical and nonsurgical providers are all on the same page during care transitions I’d like to see better coordination between my primary care doctor and surgeon. Every time I visit my PCP, they don’t seem to have any records from my surgeon. I end up getting the same studies repeated. Vulnerability of patients during care transitions I was really scared because I had never been exposed to surgery or any other type of experience like this before. I didn’t even know if I would live through the operation. Patients need to have accurate expectations of care coordination processes during transitions Knowledge is power. The more I know the more control I have, the easier it is for me not to freak out. With increased information I feel I can interact better with my surgeon. Trust established with surgical providers is central to care coordination during transitions I didn’t feel trust or confidence in my surgeon. He just came in and said we are cutting you open and left. I wasn’t given any explanation or choices. View Large Table 3 Illustrative quotes Care coordination theme Illustrative quotes Care coordination is embedded in the social contract between patients and their surgical providers I didn’t feel like I was able to establish a relationship with my surgeon before the procedure. He saw me one time and then I saw his partner. The appointments were very short and I couldn’t get all my questions answered. I felt rushed. Perception that surgical and nonsurgical providers are all on the same page during care transitions I’d like to see better coordination between my primary care doctor and surgeon. Every time I visit my PCP, they don’t seem to have any records from my surgeon. I end up getting the same studies repeated. Vulnerability of patients during care transitions I was really scared because I had never been exposed to surgery or any other type of experience like this before. I didn’t even know if I would live through the operation. Patients need to have accurate expectations of care coordination processes during transitions Knowledge is power. The more I know the more control I have, the easier it is for me not to freak out. With increased information I feel I can interact better with my surgeon. Trust established with surgical providers is central to care coordination during transitions I didn’t feel trust or confidence in my surgeon. He just came in and said we are cutting you open and left. I wasn’t given any explanation or choices. Care coordination theme Illustrative quotes Care coordination is embedded in the social contract between patients and their surgical providers I didn’t feel like I was able to establish a relationship with my surgeon before the procedure. He saw me one time and then I saw his partner. The appointments were very short and I couldn’t get all my questions answered. I felt rushed. Perception that surgical and nonsurgical providers are all on the same page during care transitions I’d like to see better coordination between my primary care doctor and surgeon. Every time I visit my PCP, they don’t seem to have any records from my surgeon. I end up getting the same studies repeated. Vulnerability of patients during care transitions I was really scared because I had never been exposed to surgery or any other type of experience like this before. I didn’t even know if I would live through the operation. Patients need to have accurate expectations of care coordination processes during transitions Knowledge is power. The more I know the more control I have, the easier it is for me not to freak out. With increased information I feel I can interact better with my surgeon. Trust established with surgical providers is central to care coordination during transitions I didn’t feel trust or confidence in my surgeon. He just came in and said we are cutting you open and left. I wasn’t given any explanation or choices. View Large Subtheme 1a: Abandonment and feeling of neglect during care transitions One of the implicit elements of the social contract with the surgical team is the expectation that patients and caregivers will not be abandoned during care transitions “when they are handed off” between providers, or as they transition between different care settings. Some patients and caregivers also described feeling neglected by their surgical providers, particularly during care transitions within their inpatient hospitalization. This led to anxiety and dissatisfaction with the healthcare team. I woke up in the hospital and no one was in the room. I had no idea what was going on. I could hear people talking. After the surgery, I woke up to no one in the room, again I had to ring to get more information. (Patient) I didn’t expect to sit for three hours after she was out of surgery and no one told me she was out of surgery. I was sitting in the recovery room 3 hours went by and nobody told me. Maybe they don’t know but it would be good if they came back in an hour or so and let you know what is going on. Do you say something if no one has talked to you for 3 hours? (Caregiver) Subtheme 1b: Expectation for personalized care coordination Nearly all surgical patients expect to be at the center of the care experience and receive personalized care coordination. But transitions of surgical care are often described as a mechanical process where patients are “passed through a multitude of handlers” between healthcare settings. This is a dehumanizing experience and patients “feel like they are simply on a conveyor belt.” In contrast, patients and caregivers who receive personalized care coordination describe feeling “respected” and important. Patient-centered or individualized care coordination impresses upon patients that their healthcare team is treating them as a discrete person and not just another medical record number. The thing I appreciate is when they are aware you are from out of town. They are so good and thoughtful about how that impacts the care experience. You call and they bring you in at 9:00 and then figure out how labs, radiology and scans all fit in. It is so wonderful. (Patient) What I did not expect is that they would call us at home to see how we were doing. They called the house, even the nurses called the house. (Caregiver) He showed me how the surgery would go on a chart. He was composed and friendly and I didn’t feel like I was just a number; the surgeon made me feel that I was someone that he was going to know and deal with and help. (Patient) I think it is the personalized attention. When you walk in the door you don’t have a 2-hour wait. They apologize if you wait 15 minutes. You walk in and they take you back into the room, and they bring the trainees in (and I get that) and they do their thing. When you get that attention from the doctor and not one of them acts like they are in a hurry. (Patient) Theme 2: Perception that surgical and nonsurgical providers are all on the same page during transitions of care Because the process of undergoing surgery for chronic health conditions is a sequence of steps that typically involves multiple clinicians and care settings over time, patients have a belief that the healthcare team is a coherent whole (Table 3). Patients commonly perceive that every healthcare provider understands what the others knows, both in terms of medical knowledge and in terms of their individual health condition. Effective communication and exchange of health information between a patient’s surgeon and their PCP is assumed to be a standard. Subtheme 2a: Expectation that information flow is rapid, automatic, and seamless between settings Patients and caregivers expect that communication channels between their surgical and nonsurgical healthcare providers are very clear, and that changes in their condition or the “next steps” are always communicated across the team members. They expect that their medical history as well as their preferences and goals of care is “shared” or known by all members of the team including their surgeon and PCP. This includes transitions when surgical care is delivered in hospitals located in different healthcare settings or states. When information flow is not rapid, automatic or seamless between care settings, surgical patients and caregivers become disillusioned and anxious regarding the care they receive from their healthcare teams. They don’t communicate not even from the same state. For example, the regional hospital did not want to provide information on surgery they performed on my leg. My doctor did not know what to do with me. The hospital had to do what they needed to do because it was an emergency. The doctor never got the CD [compact disc] of what they did with me until a doctor from the other hospital was able to find some information of what they had done to me. (Patient) It wasn’t seamless, information did not flow. I certainly didn’t feel included. There wasn’t smooth communication about the discharge between the hospital and the rehab facility. (Caregiver) Subtheme 2b: Expectation that all members of healthcare team have access to information within the medical record Patient and caregiver’s expectation that health information is shared among providers is further reinforced by the presence of an easily accessible electronic medical record (EMR). They assume that surgeons and PCPs should be able to easily access their health information in the EMR without having to ask. In particular, patients get frustrated when they are asked the same health-related questions over and over (also known as repetition fatigue [20]) and when electronic information is slow to be transferred. Every time there was a shift rotation we had to repeat the same thing over and over. I wondered why you all don’t write things down and share information. This was after the surgery. You could verify information but don’t make me repeat it. (Caregiver) Another aspect of being asked to repeat information was it made me question the care. If there is information that should have been in the chart and it wasn’t, this made me feel or question that decisions weren’t being made on the full information. (Patient) I’ve made it easy to communicate by keeping all my care in the same healthcare system. I have seen them use the EMR to get access to information. When they don’t have access to the EMR, it slows the process down. I had a lab done at an outside lab and sat in office for 1 hr to get the lab result. (Patient) Theme 3: Vulnerability during surgical transitions of care The majority of patients reported feeling scared to some degree when they were told that they needed to have surgery. Surgery is often perceived as a “matter of life or death” and this can affect care coordination, particularly during transitions before surgery (Table 3). Patients with chronic health conditions habitually come to the point of having surgery as a last result with a diagnosis that is either a surprise and or is relatively serious. If they were to not choose surgery, they “might die or other bad things could happen.” Patients often feel “they have few choices in making treatment decisions” during this care transition, “they are unclear whether they need a second or third opinion,” and their future is in the hands of the healthcare system. As a result, patients feel that many aspects of care coordination are out of their control and they rely more heavily on their primary care and surgical providers to make appropriate decisions. Subtheme 3a: Fear of dying during surgery is prevalent Even when undergoing surgery does not involve a chronic health condition that could lead to death, the fear of undergoing the surgical procedure itself affects care coordination before surgery. Patients often consider the worst-case possibility such as dying or experiencing a major complication during surgery, and care planning by the primary care or surgical teams almost never account for this level of fear and anxiety. In addition, “going under” and losing oneself is also commonly perceived by patients. They report “wondering whether they would come back normally” and if so, “would they be missing something or be suffering from pain.” Managing these expectations is a unique aspect of surgical care coordination and requires attention, support, and resources provided by the healthcare team. I went for a checkup and I was told I needed surgery. Many things came to my mind, you become scared and sad. You begin to wonder if the anesthesia will work. Or because of carelessness, a surgery that was to be very simple turns out to be very serious. What if there is an infection? A simple surgery can turn into something very tragic. A flood of questions come to your mind and also to your family. What happens if I die, what will happen to my kids? You can’t go happy into surgery. (Patient) it was a choice of living with that kind of pain or asking God to take me. The day I had surgery all 7 of my children came from as far away as San Diego and Las Vegas. That scared me, that they would see me for the last time. I was really scared (Patient) Subtheme 3b: Surgery is a foreign experience Undergoing surgery was described as a foreign experience by many patients in this study. Although many people have undergone a surgical procedure at some point in their life, or know a family member that has, each procedure is a different and unique experience. As such, undergoing surgery for each chronic health condition is described as a “new and confusing” experience for many patients due to the unique challenges associated with navigating the healthcare system. In particular, patients and their caregivers frequently complain that they do not feel that their primary care or surgical providers prepare them for surgery, and they do not know what to expect during the transitions before and after surgery. This results in coordination of care that is often described as “fragmented” between providers and care settings. I was really scared because I had never had this type of experience. I expected that they would save my daughter’s life. I thought it was a matter of life and death, and because they saw my fear they attended to me very quickly. (Caregiver) It all seemed so fast. I went from the first appointment, to meeting the surgeon to the surgery being scheduled. It all was moving so fast. Within 2–3 weeks I was having surgery. At some time, I had to make the decision whether I was really confident. It was really hard and scary. (Patient) Theme 4: Patients need to have accurate expectations of the specific processes associated with coordination of their care before and after surgery Undergoing surgery can be very disruptive to the lives of patients and their families and they need to have accurate expectations of the processes involved with care coordination before, during, and after surgery (Table 3). This includes knowing “who is going to do what, when, and where.” But patients frequently do not know what to expect and healthcare providers fail to provide them with adequate information, time to make plans, support resources, and communication channels to help coordinate their care before or after surgery. The result is that patients and caregivers are forced to be extremely vigilant right at the time that they are the most vulnerable. Subtheme 4a: Attempts by patients to prepare and assert control during care transitions are often not supported Surgery requires a great deal of planning and preparation for patients and their caretakers. They need to account for time away from work or their families during the surgical hospitalization itself and make plans for the post-discharge recovery phase as well. Patient’s functional status or mobility may also be affected during the transition following surgery and they might have to rely upon others for basic needs such as food or transportation. However, current models of surgical care coordination do not account for these factors, and surgical patients are often forced into a passive role where they react to events but do not have time to prepare for them. Patients and caregivers often get “bounced around between different hospitals and providers” without much control of how their care is delivered or who is coordinating it. This often leads to frustration and dissatisfaction with the entire healthcare system. You need to have realistic expectations and worst-case scenario. You need to know that the worst case could happen to you. I want to know that I have plans in place to cover all the options. It gives you the chance to prepare. (Patient) it all started out when she received her wound. We go to the ER here and her foot was all red and she had pain in her bones. The ER doctor said it was just a bruise go home, it happened a couple of times. I was really disappointed. Finally, they admitted her to the hospital for 4.5 days. I didn’t know who her doctor was until he came out and told me that he was going to remove her foot. And then they sent her to another hospital. I never did meet any of her doctors except for one of the surgeons. I was really uncertain about the whole experience. (Caregiver) didn’t have the chance to plan because I had only 2-weeks post-consult. I am single mother of 4 and there was a significant risk that I would die or lose my sight. I had to plan for that and prepare my children for those options. I had to make arrangements for all of those options. I was in ICU for 1 day and in hospital for 5 days. I couldn’t be alone when I came back home so my parents had to stay with me. (Patient) For me several months passed and I could not walk. I limped when I would walk so I went to the doctor and I told them that I was still limping. They told me not to worry about it because that lasts one year, and yes, that’s how long it took to begin walking normal. After a year it was like I had not had surgery. It was perfect, but it took a year. (Patient) Subtheme 4b: Patients need detailed information about their care plan The majority of patients and caregivers in this study felt that detailed information was needed from their surgical team in order to have accurate expectations of care coordination processes before and after surgery. This included having “accurate knowledge of the risks and benefits associated with their procedure, understanding what would happen to them in the hospital, and knowing what to expect during the recovery process.” This need for detailed information increases as patients assert their independence and feel more engaged with their healthcare team. Consequently, communication with the surgical team and care coordination improves when patients felt more informed and knowledgeable about their surgical condition. I have to know what is going on before I get in there. I have to know how to deal with the post-op thing. Once I get out and I think educating yourself is something that everyone needs to spend more time doing because to me it was just we were put under such unrealistic amounts of stress that it was impossible to do your job. (Patient) As a student, I prepared myself and evaluated myself to be ready before my surgery so I would not have any problems. I prepared myself but I worry about people who don’t know what to do. (Patient) knowledge is power. The more I know the more control I have, the easier it is for me not to freak out. With increased information, I feel I can interact better with my healthcare team. It is better to know, I like knowing. It helps me communicate with my care team. (Patient) Theme 5: Care coordination relies upon patient trust with the surgical team The majority of patients in this study felt that establishing a level of trust with their healthcare providers was critical to care coordination during transitions of care before and after surgery (Table 3). But in many cases, patients met their surgeon shortly before the operation and did not have much time to establish a relationship with the surgical team like they have with their PCPs. Furthermore, although trust is often established with limited background information, it needs to be supported and reaffirmed to patients and their caregivers throughout all transitions of surgical care. Subtheme 5a: Experience of the surgical team Patients believe that the success of their surgery and the quality of care coordination during transitions is dependent on the skill and experience of the surgeon and the team. In order to create trust with their providers, patients want to know the level of experience of the surgeon and their team. Furthermore, they want to know whether surgical trainees will be directly involved in their care. There is some degree of apprehension by many patients and caregivers about whether the quality of their care coordination is affected by having trainees involved. All of us enter the hospital happy and there’s always something that could go bad and will irritate you, maybe because of our ignorance of what the doctors are supposed to do, we know that at the University the clinic is staffed by students. And we know that we are exposed to the fact that a new student may be helping with the surgery so that they can also learn and be ready. (Patient) I found out he had done my procedure over 300 times. That made me very confident that he knew what he was doing. (Patient) I found my doctor from referral from friend. I was confident in his knowledge, although his bedside manner was not great. I knew he operated on athletes which gave me confidence. (Patient) Subtheme 5b: Ability to put patients’ mind at ease improves care coordination The ability to provide information that relieves anxiety and helps put patients and their caregivers at ease is an innate social skill that helps support care coordination during transitions of care. A lot of patients are worried about surgery and a surgeon’s “bedside manner” can whether help alleviate or exacerbate concerns. In addition, this social behavior can affect how well information is communicated and received by patients and caregivers during care transitions. I think for my husband, he’s the type of person who is scared of surgery so having to put it off for quite some time and seeing this doctor and his staff making him feel comfortable and let him know that it was not as bad as he thought with the horror stories he has heard before they made him feel really comfortable enough to go ahead and schedule the surgery and go through with it because previous consultations were not successful. (Caregiver) we came with a yellow pad packed full of questions because he was so worried about the surgery. The surgeon and his student took all the time he needed and all his questions were answered. I was so grateful that he took the time we needed. That is what gave us the confidence. (Caregiver) DISCUSSION The coordination of care for patients with chronic disease commonly involves multiple transitions between primary care and acute-care surgical providers. These transitions before and after surgery often occur often cross-care settings, providers, and information systems and may create both barriers or supports for patients and their caregivers. We identified five main themes that characterize how patients and their caregivers perceive care coordination during transitions of surgical care as a consequence of these barriers or supports. The results of this exploratory study suggest that patients feel especially vulnerable during transitions between providers before and after surgery and require extra efforts by the healthcare team to establish trust, define expectations of care, and support effective care coordination processes. Interventions directed at improving care coordination for patients with chronic disease need to account for frequent transitions across the entire episode of surgical care, and the factors that define the care experience for patients and their caregivers. Identifying these factors will help improve patient satisfaction and clinical outcomes. It is well recognized that care coordination during transitions need to be optimized for patients with multiple chronic health conditions in order to achieve the best clinical outcomes. The Joint Commission, the Centers for Medicare and Medicaid (CMS), and the Institute of Medicine (IOM) have all identified care coordination during transitions of care as one of the keys to improving the effectiveness and safety of our U.S. healthcare system [21]. Furthermore, transition care programs for vulnerable patients were incentivized by passage of the Patient Protection and Affordable Care Act of 2010 [22]. This has resulted in the development of multiple strategies to improve care coordination during transitions between outpatient and inpatient settings for older patients with multiple chronic disease conditions [23]. Although multiple strategies have been proposed to improve care coordination for medically complex older patients during transitions of care, it is unclear what strategies are most effective for patients undergoing surgery. Our study illustrates the factors deemed to be most important to patients and caregivers during transitions of surgical care, which may help develop new patient-centered strategies for surgical patients. To start, our results show that care coordination is defined during surgical transitions by the relationship and interactions between the surgeon and patient/caregiver. This includes elements of trust, expectations, information exchange, collaboration, and patient vulnerability. Both the primary care and surgical teams must acknowledge and define a patient-centered care plan for how they will address these different needs of the patient and their caregiver. In addition, patients and caregivers need to be made aware of communication issues that will likely affect care coordination, so they can spot problems when they arise, act as their own advocates, and assure their providers have necessary information to provide effective care. Second, our study identifies several areas where surgical care coordination is unique and should be approached differently than when transitions occur for nonsurgical conditions. For example, patients’ perception of fear and vulnerability is common and results from the inherent risks of each type of surgery. These emotions may prevent patients from retaining important information regarding their treatment plan during transitions and must be recognized by the providers who are coordinating their care. One approach does not fit all types of patients, and strategies for surgical patients need to focus on delivering personalized care that is specific to the surgical encounter. Communication processes are known to form a key component of shared decision making for patients with chronic healthcare needs, and allowing their providers to deliver patient-centered care coordination [24]. The importance of effective communication with surgical providers was also reinforced by participants during our focus group sessions. From the patient’s perspective, this involves efforts by their surgeon to elicit, understand, and validate their goals, involve them in the decision-making process to the extent desired, and provide clear and understandable explanations of their surgical care. Establishing open communication with the surgical team was felt by patients and caregivers to foster a relationship characterized by trust and commitment [25, 26]. Care coordination also requires active participation by the patient and caregivers, including asking questions, stating preferences, expressing concerns, conveying understanding, and providing their goals of care [27, 28]. Another facet of care coordination discerned by patients is the quality of communication among their different healthcare providers. Prior studies have shown that communication errors are common between providers from different specialties, particularly when exchanging health information on patients with multiple health conditions [29–31]. Miscommunication affects the continuity, quality, and timeliness of care coordination for patients and caregivers [30, 32], which was similarly reported in our study. However, efforts to standardize communication during transitions are difficult, and most circumstances do not allow direct methods of communication between surgical and nonsurgical providers such as face-to-face, telephone, or video-linked conversation [33]. In most instances, providers are separated in time and space and must rely exclusively upon electronic methods such as the electronic health record (EHR) as the primary means to exchange clinical information after a visit with one provider and before a visit with another provider [34, 35]. As discussed in our study, patients often erroneously assume that information exchange is seamless when the EHR is used. However, provider communication using current EHR technology is known to be error-prone, including inaccurate assumptions about the intent and motivation of transfer, insufficient information, inappropriate referrals, and poor agreement about care plans [34–37]. Future EHR systems are being designed to address these limitations and may consequently improve how patients’ perceive coordination of their care between different providers in the healthcare system. There are several limitations to this study, which are inherent to focus-group methodology. First, due to the limited number of overall participants, the exploration of opinions may be more superficial than in other study designs and may be subject to selection bias. As such, the findings from this study may lack reliability, validity, and/or generalizability. Second, although focus groups were conducted in both rural and urban communities within the Intermountain West, the values of these patients and caregivers may not be generalizable to surgical populations in other regions of the USA. Third, the responses of patient and caregivers during focus groups may be more reflective of their overall care experience with surgery rather than the quality of their care coordination per se. Fourth, the majority of participants were exposed to major surgical procedures (Table 1), and the themes that emerged may not be relevant to care coordination for minor surgical procedures. And finally, focus groups are sensitive to group dynamics, which can lead to group censoring. We tried to avoid this bias by regularly asking all participants to give their opinions and responses to questions. CONCLUSIONS The coordination of chronic patient care frequently involves transitions between primary care and surgical specialists and different care settings. Surgical patients and caregivers frequently feel vulnerable during these transitions and require care coordination processes involving informatics infrastructure, trust, patient education, and information exchange between providers. Unfortunately, this level of patient-centered care coordination is too often deficient during transitions of surgical care. These factors need to be taken into consideration when coordinating care for patients undergoing surgery and developing new interventions to make care coordination more patient-centered during these care transitions. Compliance with Ethical Standards Conflict of Interest: None declared. Primary Data: The data reported in this study have not been previously reported or published, and the manuscript is not being simultaneously submitted elsewhere. The authors have full control of all primary data and agree to allow TBM to review this data if requested. Author Contributions: All authors have seen this manuscript, agreed to the content of this manuscript, and agree with its submission for publication. Ethical Approval: The study protocol was approved by the University of Utah Institutional Review Board, and all procedures involving human participants were in accordance with the ethical standards of the institutional and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. This article does not contain any studies with animals performed by any of the authors. Informed Consent: Informed consent was obtained from all individual participants included in the study. Acknowledgments The study was funded by the first author and received no external funding sources. APPENDIX 1. SCRIPT USED FOR FOCUS GROUP SESSIONS Primary Purpose: To identify barriers and facilitators that influence the success of care coordination during transitions from inpatient to outpatient care, and between primary care and specialty surgical care. Individual Introductions: Name, where you live, occupation, type of surgery, what services did you (or patient you care for) receive? How long ago was episode of surgical care? Explain Stick Faces (1–5 scale) 1. Draw a picture: we’re here today to understand your special experience as a surgical patient, draw a picture that describes with as much detail as possible feelings you had when your primary care physician referred you to the surgeon. Be sure to label all items. Include such items as what made you feel confident, scared, comforted, or inconvenienced. Brainstorming session: What did I expect, what didn’t I expect sheet. We are now going to go around the room and ask you to share what comes to your mind with the following phrase: When I found out I was going to have surgery, I expected: ______________________________ What I didn’t expect when I found out I was going to have surgery was________________________ 2. Stick Face:Prior to my surgical consult, I felt confident about the surgeon I was being referred to by my PCP. a. What factors influenced your choice of surgeon? Did you seek a second opinion or see several surgeons before selecting one? Discuss. 3. Stick Face:As a surgery patient, my healthcare providers did everything possible to coordination my care and make it convenient for me during the transition before surgery. b. What inconveniences did I experience as a surgery patient before going to the hospital? Discuss. c. What surprises did I have as a surgery patient before going to the hospital? Discuss. 4. Stick Face:As a surgery patient, my healthcare providers did everything possible to coordination my care and make it convenient for me after my surgery. d. What inconveniences did I experience after my surgery? Discuss. e. What surprises did I experience after my surgery? Discuss. f. Did you feel that information about your surgery was effectively communicated to your primary care doctors or other doctors that take care of your long-term conditions? g. Did your family or care giver experienced inconveniences before/during or after your surgery? 5. Describe your expectations for care coordination before and after surgery and give examples of excellent care with regard to your entire surgical care experience. 6. If you could change one thing, what could most improve the experience for surgical patients like you during the transitions before and after surgery? References 1. U.S. Department of Health and Human Services . 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Patient and caregiver perspectives on care coordination during transitions of surgical care

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Abstract

Abstract Care coordination for patients with chronic disease commonly involves multiple transitions between primary care and surgical providers. These transitions often cross healthcare settings, providers, and information systems. We performed a cross-sectional qualitative study to gain a better understanding of the factors that influence how patients and caregivers perceive care coordination during transitions of surgical care. Eight focus groups were conducted among individuals from three different U.S. states who had experienced an episode of surgical care within the past year. We included patients who had undergone major surgery for a chronic condition, as well as caregivers. We used Atlas.ti qualitative software and engaged in an iterative process of thematic analysis of focus group transcripts. After five-rounds of review, five main themes emerged that define chronic care coordination for surgical patients and caregivers: (a) Care coordination is embedded in the unwritten social con tract patients share with their surgical providers; (b) Patients expect all surgical and nonsurgical healthcare providers to be “on the same page”; (c) Patients are frightened and vulnerable during surgical care transitions; (d) Patients need to have accurate expectations of the processes associated with care coordination; and (e) Care coordination relies upon establishing patient trust with their surgical team and needs to be continually reaffirmed. Surgical patients and caregivers expect care coordination processes to involve informatics infrastructure, patient education, and information exchange between providers. Unfortunately, these aspects of care coordination are often lacking during transitions. These findings have implications for designing patient-centered interventions to improve coordination of chronic care. Implications Practice: Patients with chronic health conditions undergo frequent transitions for surgical care and experience poor care coordination when there is lack of communication, low levels of trust, and inadequate information exchange with their healthcare team. Policy: Efforts by policymakers to improve care coordination for patients with chronic disease need to account for frequent transitions of surgical care and the factors that define the care experience for patients and their caregivers. Research: Future research is needed to evaluate the impact of patient-centered care coordination interventions on the quality of care and outcomes for patients undergoing transitions of surgical care. INTRODUCTION Nearly half of all adults in the USA have one or more chronic health conditions that require regular healthcare utilization distributed among multiple healthcare providers [1]. It is well recognized that coordination of care services between different healthcare providers and settings needs to be optimized for patients with chronic diseases in order to achieve optimal clinical outcomes [2]. This challenge is considerable for the majority of adult patients who, within 1 year, see their primary care provider (PCP) in addition to multiple specialty care providers. A recent study highlighted this issue by showing that up to 95 per cent of elderly patients see some type of specialist annually, with an average of almost nine visits per year [3]. The need for surgical care is one of the most common reasons for adult patients to be referred to specialist healthcare providers. On an annual basis, nearly 30 per cent of all hospital stays in the USA will involve some type of surgical procedure [4]. Patients with chronic health conditions commonly need one of the wide variety of surgical procedures, either as a consequence of their chronic diseases or from unrelated processes such as trauma. Episodes of surgical care commonly require that patients transition between PCP and surgical specialty providers, who often practice in different care settings. Transitions between different healthcare systems may also be necessary in cases when specialized surgical services are only offered in certain hospitals with unique types of technologies or provider expertise. Surgical patients and their caregivers are at risk of receiving fragmented care during these types of transitions given that patients frequently transition from their personal PCP to surgical specialists who may not be as familiar with their chronic care plan and long-term goals of care [5]. Multiple strategies have been developed to help bridge these types of care gaps during transitions between outpatient and inpatient settings. Different care coordination models have been shown to be effective in reducing readmissions, particularly among patients hospitalized for chronic medical conditions [6, 7]. However, these strategies were not designed specifically for surgical patients, and it is not clear whether they improve patient satisfaction with care. Surgical care is unique in many regards and poses distinct challenges for patients during care transitions. As such, it is also uncertain whether these interventions address the issues and needs deemed to be important by surgical patients and their caregivers. In order to develop patient-centered care coordination strategies for surgical care, the first step is to understand the factors that influence how patients and caregivers perceive their coordination of care during transitions before, during, and after surgery. This includes clarifying the perceptions and experiences of patients as well as identifying the types of barriers and facilitators that influence the success of care coordination during transitions from inpatient to outpatient care, between hospital units, and between primary care to specialty surgical care. The aim of this qualitative study is to elucidate the challenges that patients and caregivers commonly experience during transitions of surgical care for chronic health conditions. METHODS Study design A qualitative study using focus groups was conducted to assess the experiences of patient and caregivers with care coordination during transitions across an episode of surgical care. Care transitions included those between primary care and surgical providers, transitions that occurred during the surgical hospitalization, as well as the transitions between outpatient and inpatient settings before and after surgery. We conducted an iterative process of qualitative analysis using an interactive model to identify emergent themes associated with surgical care coordination [8, 9]. Participants and settings Individuals with chronic health conditions who had recently experienced a major surgery as either a patient or a caregiver were recruited from community healthcare clinics in eight different locations within the Intermountain West, including urban and rural regions within Utah, Idaho, and Wyoming. This geographic distribution represents a hospital referral region (HRR) for tertiary surgical care [10], and participants were included if surgery had occurred in this region within the prior year. Participants were excluded if surgery was undertaken for traumatic or acute care conditions. Focus groups were conducted in community centers located in Salt Lake City, UT (three focus groups), West Valley City, UT (two focus groups), Evanston, WY (one focus group), Pocatello, ID (one focus group), and Vernal, UT (one focus group) in order to sample patients from different communities and sociodemographic backgrounds within this HRR. Rural communities were defined by as those with a population less than 50,000 [11]. A bilingual moderator led two focus groups in a community with a high percentage of Hispanic patients. Each focus group had a maximum of 15 participants. They were recruited using fliers posted in healthcare clinics, physician referrals, and media (television and newspaper articles). All types of surgical specialty care were included. A total of eight focus groups were conducted in order to reach saturation among a diverse sociodemographic surgical population [12]. Procedures were approved by the University of Utah’s Institutional Review Board. Procedures Data were collected between May and August 2014. Focus groups were used because group discussion is thought to result in a deeper, more relevant discussion of the issues. It is a socially based experience where individuals can describe their views in the context of others and is an opportunity to observe group sense-making. Focus groups are particularly useful in identifying group norms or cultural values, or when there is no right answer and the purpose of the investigation is to sample the range of perceptions [13, 14]. Factors associated with the validity of focus groups center around the degree to which the group is representative and diverse. Our selection and recruitment process was committed to creating diversity of surgical patients and caregivers from different socioeconomic, cultural, and geographic backgrounds within the HRR that would have different experiences with care coordination during transitions. Semistructured interviews were conducted by the moderators using a prepared script (Appendix 1) and a structured process for the interview. Methods suggested by Krueger and Morgan [15, 16] were utilized, which included the use of picture drawing and rating scales to stimulate discussion. The emphasis was on creating a “focused conversation” where individuals would feel comfortable to share their surgical experiences and to explore the topic of care coordination. Each focus group took less than 1.5 hours (median 1.35 hours), and all discussions were tape-recorded and transcribed for later analysis. Questions were used as a framework for discussion, but probes steered the conversation as appropriate. Data analysis The transcribed records were analyzed using ATLAS.ti (Berlin) [17] qualitative software according to the procedures adapted from Krueger and general qualitative procedures (see below for description of the analysis) [18, 19]. The research team (n = 3) initially independently reviewed the transcripts, highlighting beliefs, attitudes, norms, beliefs, and areas of tension or other emotional content. Then, the group met, discussed the areas identified, and gave the text a classification or “precode” according to the directions recommended by Patton [8]. The text was then reread by each member and again independently reviewed for redundancy, new perspectives, and overarching constructs. The code book was further developed with each round of iterative review. The third review and discussion aggregated the new additional precodes with a second level of analysis to map relations between the codes and identify any emerging theme until data saturation was achieved. The next two discussions focused on aggregating and combining the precodes into meaningful constructs by reviewing the associated quotations or texts for the fourth time. These constructs were refined through an iterative process of discussion that was the first stage of a formal content coding protocol. A final review by the research team identified the themes and subthemes. RESULTS A total of 114 individuals attended one of the eight different focus groups. The characteristics of focus group participants are shown in Table 1, stratified by 90 (79%) patients who had undergone a major surgery experience themselves and the remaining 24 participants who were patient caregivers. This cohort included patients and caregivers from Hispanic backgrounds (20%) and rural communities (25%) who had undergone a broad range of surgical procedures for different chronic health conditions (Table 1). In addition, focus groups included three patient–caregiver dyads. Table 1 Characteristics of surgical patients and caregivers who participated in focus groups (N = 114) Variable Surgical patient (N = 90) Caregiver (N = 24) Age, mean (SD) 62.5 (10.5) 63.2 (9.7) Male gender, n (%) 52 (58) 10 (42) Hispanic race/ethnicity, n (%) 19 (21) 4 (17) Rural, n (%) 21 (23) 8 (33) Type of surgery, n (%)  General surgery 21 (23) 6 (25)  Orthopedic surgery 28 (31) 4 (17)  Neurosurgery 7 (8) 2 (8)  Cardiothoracic surgery 22 (24) 10 (42)  Vascular surgery 6 (7) 1 (4)  Other 6 (7) 1 (4) Chronic health condition, n (%)  Cancer 28 (31) 8 (33)  Ischemic heart disease 22 (24) 10 (42)  Degenerative joint disease 28 (31) 4 (17)  Peripheral vascular disease 6 (7) 1 (4)  Other 6 (7) 1 (4) Variable Surgical patient (N = 90) Caregiver (N = 24) Age, mean (SD) 62.5 (10.5) 63.2 (9.7) Male gender, n (%) 52 (58) 10 (42) Hispanic race/ethnicity, n (%) 19 (21) 4 (17) Rural, n (%) 21 (23) 8 (33) Type of surgery, n (%)  General surgery 21 (23) 6 (25)  Orthopedic surgery 28 (31) 4 (17)  Neurosurgery 7 (8) 2 (8)  Cardiothoracic surgery 22 (24) 10 (42)  Vascular surgery 6 (7) 1 (4)  Other 6 (7) 1 (4) Chronic health condition, n (%)  Cancer 28 (31) 8 (33)  Ischemic heart disease 22 (24) 10 (42)  Degenerative joint disease 28 (31) 4 (17)  Peripheral vascular disease 6 (7) 1 (4)  Other 6 (7) 1 (4) View Large Table 1 Characteristics of surgical patients and caregivers who participated in focus groups (N = 114) Variable Surgical patient (N = 90) Caregiver (N = 24) Age, mean (SD) 62.5 (10.5) 63.2 (9.7) Male gender, n (%) 52 (58) 10 (42) Hispanic race/ethnicity, n (%) 19 (21) 4 (17) Rural, n (%) 21 (23) 8 (33) Type of surgery, n (%)  General surgery 21 (23) 6 (25)  Orthopedic surgery 28 (31) 4 (17)  Neurosurgery 7 (8) 2 (8)  Cardiothoracic surgery 22 (24) 10 (42)  Vascular surgery 6 (7) 1 (4)  Other 6 (7) 1 (4) Chronic health condition, n (%)  Cancer 28 (31) 8 (33)  Ischemic heart disease 22 (24) 10 (42)  Degenerative joint disease 28 (31) 4 (17)  Peripheral vascular disease 6 (7) 1 (4)  Other 6 (7) 1 (4) Variable Surgical patient (N = 90) Caregiver (N = 24) Age, mean (SD) 62.5 (10.5) 63.2 (9.7) Male gender, n (%) 52 (58) 10 (42) Hispanic race/ethnicity, n (%) 19 (21) 4 (17) Rural, n (%) 21 (23) 8 (33) Type of surgery, n (%)  General surgery 21 (23) 6 (25)  Orthopedic surgery 28 (31) 4 (17)  Neurosurgery 7 (8) 2 (8)  Cardiothoracic surgery 22 (24) 10 (42)  Vascular surgery 6 (7) 1 (4)  Other 6 (7) 1 (4) Chronic health condition, n (%)  Cancer 28 (31) 8 (33)  Ischemic heart disease 22 (24) 10 (42)  Degenerative joint disease 28 (31) 4 (17)  Peripheral vascular disease 6 (7) 1 (4)  Other 6 (7) 1 (4) View Large The process of identifying themes involved a content review of the quotations involved under the different constructs (above). The constructs were then aggregated into higher level units of meaning. The result of this content analysis resulted in five main themes to describe patients’ experience with care coordination during transitions of care, which each included several subthemes (Table 2). Table 2 Themes and subthemes that define chronic care coordination for surgical patients and caregivers Themes Subthemes Care coordination is embedded in the unwritten social contract patients’ share with their surgical providers Abandonment and feeling of neglect during transitions of care Expectation for personalized care coordination Patients expect all healthcare providers, including surgeons and primary care providers, to be on the same page with each other during care transitions Expectation that information flow is rapid, automatic, and seamless between healthcare settings Expectation that all members of the care team have access to same information within the medical record Patients are frightened and vulnerable during surgical transitions of care Fear of dying during surgery is prevalent and affects care coordination Surgery is a foreign experience Patients have a need to have accurate expectations of the care processes associated with coordination of their care before and after surgery Attempts by patients to prepare and assert control during care transitions are often not supported Patients need detailed information about their care plan Care coordination relies upon patient trust with their surgical team and needs to be established and reaffirmed throughout the process Experience of the surgical team Ability of a surgeon to put patients’ mind at ease improves care coordination Themes Subthemes Care coordination is embedded in the unwritten social contract patients’ share with their surgical providers Abandonment and feeling of neglect during transitions of care Expectation for personalized care coordination Patients expect all healthcare providers, including surgeons and primary care providers, to be on the same page with each other during care transitions Expectation that information flow is rapid, automatic, and seamless between healthcare settings Expectation that all members of the care team have access to same information within the medical record Patients are frightened and vulnerable during surgical transitions of care Fear of dying during surgery is prevalent and affects care coordination Surgery is a foreign experience Patients have a need to have accurate expectations of the care processes associated with coordination of their care before and after surgery Attempts by patients to prepare and assert control during care transitions are often not supported Patients need detailed information about their care plan Care coordination relies upon patient trust with their surgical team and needs to be established and reaffirmed throughout the process Experience of the surgical team Ability of a surgeon to put patients’ mind at ease improves care coordination View Large Table 2 Themes and subthemes that define chronic care coordination for surgical patients and caregivers Themes Subthemes Care coordination is embedded in the unwritten social contract patients’ share with their surgical providers Abandonment and feeling of neglect during transitions of care Expectation for personalized care coordination Patients expect all healthcare providers, including surgeons and primary care providers, to be on the same page with each other during care transitions Expectation that information flow is rapid, automatic, and seamless between healthcare settings Expectation that all members of the care team have access to same information within the medical record Patients are frightened and vulnerable during surgical transitions of care Fear of dying during surgery is prevalent and affects care coordination Surgery is a foreign experience Patients have a need to have accurate expectations of the care processes associated with coordination of their care before and after surgery Attempts by patients to prepare and assert control during care transitions are often not supported Patients need detailed information about their care plan Care coordination relies upon patient trust with their surgical team and needs to be established and reaffirmed throughout the process Experience of the surgical team Ability of a surgeon to put patients’ mind at ease improves care coordination Themes Subthemes Care coordination is embedded in the unwritten social contract patients’ share with their surgical providers Abandonment and feeling of neglect during transitions of care Expectation for personalized care coordination Patients expect all healthcare providers, including surgeons and primary care providers, to be on the same page with each other during care transitions Expectation that information flow is rapid, automatic, and seamless between healthcare settings Expectation that all members of the care team have access to same information within the medical record Patients are frightened and vulnerable during surgical transitions of care Fear of dying during surgery is prevalent and affects care coordination Surgery is a foreign experience Patients have a need to have accurate expectations of the care processes associated with coordination of their care before and after surgery Attempts by patients to prepare and assert control during care transitions are often not supported Patients need detailed information about their care plan Care coordination relies upon patient trust with their surgical team and needs to be established and reaffirmed throughout the process Experience of the surgical team Ability of a surgeon to put patients’ mind at ease improves care coordination View Large Theme 1: Care coordination is embedded in the social contract between patients and their surgical providers The relationship between patients and their surgeon is perceived to be a unique and unwritten social contract by the majority of individuals and guides their expectations for care coordination (Table 3). Specifically, patients who need surgery are uniquely dependent on their surgeon to “guide them” through the episode of care given that the process of undergoing each surgical procedure involves specific care processes and certain risks that include a “loss of self.” This dependency intensifies the need to have a relationship or social bond with the surgeon. This social contract includes assurances that they will be cared for without abandonment and be given personalized care. These feelings and expectations may be implicit and go beyond the usual social contracts with other healthcare providers because of the degree of dependency and risks associated with surgery. Care coordination strategies must account for these unique expectations of patients and their caregivers during transitions before, during, and after surgery. Table 3 Illustrative quotes Care coordination theme Illustrative quotes Care coordination is embedded in the social contract between patients and their surgical providers I didn’t feel like I was able to establish a relationship with my surgeon before the procedure. He saw me one time and then I saw his partner. The appointments were very short and I couldn’t get all my questions answered. I felt rushed. Perception that surgical and nonsurgical providers are all on the same page during care transitions I’d like to see better coordination between my primary care doctor and surgeon. Every time I visit my PCP, they don’t seem to have any records from my surgeon. I end up getting the same studies repeated. Vulnerability of patients during care transitions I was really scared because I had never been exposed to surgery or any other type of experience like this before. I didn’t even know if I would live through the operation. Patients need to have accurate expectations of care coordination processes during transitions Knowledge is power. The more I know the more control I have, the easier it is for me not to freak out. With increased information I feel I can interact better with my surgeon. Trust established with surgical providers is central to care coordination during transitions I didn’t feel trust or confidence in my surgeon. He just came in and said we are cutting you open and left. I wasn’t given any explanation or choices. Care coordination theme Illustrative quotes Care coordination is embedded in the social contract between patients and their surgical providers I didn’t feel like I was able to establish a relationship with my surgeon before the procedure. He saw me one time and then I saw his partner. The appointments were very short and I couldn’t get all my questions answered. I felt rushed. Perception that surgical and nonsurgical providers are all on the same page during care transitions I’d like to see better coordination between my primary care doctor and surgeon. Every time I visit my PCP, they don’t seem to have any records from my surgeon. I end up getting the same studies repeated. Vulnerability of patients during care transitions I was really scared because I had never been exposed to surgery or any other type of experience like this before. I didn’t even know if I would live through the operation. Patients need to have accurate expectations of care coordination processes during transitions Knowledge is power. The more I know the more control I have, the easier it is for me not to freak out. With increased information I feel I can interact better with my surgeon. Trust established with surgical providers is central to care coordination during transitions I didn’t feel trust or confidence in my surgeon. He just came in and said we are cutting you open and left. I wasn’t given any explanation or choices. View Large Table 3 Illustrative quotes Care coordination theme Illustrative quotes Care coordination is embedded in the social contract between patients and their surgical providers I didn’t feel like I was able to establish a relationship with my surgeon before the procedure. He saw me one time and then I saw his partner. The appointments were very short and I couldn’t get all my questions answered. I felt rushed. Perception that surgical and nonsurgical providers are all on the same page during care transitions I’d like to see better coordination between my primary care doctor and surgeon. Every time I visit my PCP, they don’t seem to have any records from my surgeon. I end up getting the same studies repeated. Vulnerability of patients during care transitions I was really scared because I had never been exposed to surgery or any other type of experience like this before. I didn’t even know if I would live through the operation. Patients need to have accurate expectations of care coordination processes during transitions Knowledge is power. The more I know the more control I have, the easier it is for me not to freak out. With increased information I feel I can interact better with my surgeon. Trust established with surgical providers is central to care coordination during transitions I didn’t feel trust or confidence in my surgeon. He just came in and said we are cutting you open and left. I wasn’t given any explanation or choices. Care coordination theme Illustrative quotes Care coordination is embedded in the social contract between patients and their surgical providers I didn’t feel like I was able to establish a relationship with my surgeon before the procedure. He saw me one time and then I saw his partner. The appointments were very short and I couldn’t get all my questions answered. I felt rushed. Perception that surgical and nonsurgical providers are all on the same page during care transitions I’d like to see better coordination between my primary care doctor and surgeon. Every time I visit my PCP, they don’t seem to have any records from my surgeon. I end up getting the same studies repeated. Vulnerability of patients during care transitions I was really scared because I had never been exposed to surgery or any other type of experience like this before. I didn’t even know if I would live through the operation. Patients need to have accurate expectations of care coordination processes during transitions Knowledge is power. The more I know the more control I have, the easier it is for me not to freak out. With increased information I feel I can interact better with my surgeon. Trust established with surgical providers is central to care coordination during transitions I didn’t feel trust or confidence in my surgeon. He just came in and said we are cutting you open and left. I wasn’t given any explanation or choices. View Large Subtheme 1a: Abandonment and feeling of neglect during care transitions One of the implicit elements of the social contract with the surgical team is the expectation that patients and caregivers will not be abandoned during care transitions “when they are handed off” between providers, or as they transition between different care settings. Some patients and caregivers also described feeling neglected by their surgical providers, particularly during care transitions within their inpatient hospitalization. This led to anxiety and dissatisfaction with the healthcare team. I woke up in the hospital and no one was in the room. I had no idea what was going on. I could hear people talking. After the surgery, I woke up to no one in the room, again I had to ring to get more information. (Patient) I didn’t expect to sit for three hours after she was out of surgery and no one told me she was out of surgery. I was sitting in the recovery room 3 hours went by and nobody told me. Maybe they don’t know but it would be good if they came back in an hour or so and let you know what is going on. Do you say something if no one has talked to you for 3 hours? (Caregiver) Subtheme 1b: Expectation for personalized care coordination Nearly all surgical patients expect to be at the center of the care experience and receive personalized care coordination. But transitions of surgical care are often described as a mechanical process where patients are “passed through a multitude of handlers” between healthcare settings. This is a dehumanizing experience and patients “feel like they are simply on a conveyor belt.” In contrast, patients and caregivers who receive personalized care coordination describe feeling “respected” and important. Patient-centered or individualized care coordination impresses upon patients that their healthcare team is treating them as a discrete person and not just another medical record number. The thing I appreciate is when they are aware you are from out of town. They are so good and thoughtful about how that impacts the care experience. You call and they bring you in at 9:00 and then figure out how labs, radiology and scans all fit in. It is so wonderful. (Patient) What I did not expect is that they would call us at home to see how we were doing. They called the house, even the nurses called the house. (Caregiver) He showed me how the surgery would go on a chart. He was composed and friendly and I didn’t feel like I was just a number; the surgeon made me feel that I was someone that he was going to know and deal with and help. (Patient) I think it is the personalized attention. When you walk in the door you don’t have a 2-hour wait. They apologize if you wait 15 minutes. You walk in and they take you back into the room, and they bring the trainees in (and I get that) and they do their thing. When you get that attention from the doctor and not one of them acts like they are in a hurry. (Patient) Theme 2: Perception that surgical and nonsurgical providers are all on the same page during transitions of care Because the process of undergoing surgery for chronic health conditions is a sequence of steps that typically involves multiple clinicians and care settings over time, patients have a belief that the healthcare team is a coherent whole (Table 3). Patients commonly perceive that every healthcare provider understands what the others knows, both in terms of medical knowledge and in terms of their individual health condition. Effective communication and exchange of health information between a patient’s surgeon and their PCP is assumed to be a standard. Subtheme 2a: Expectation that information flow is rapid, automatic, and seamless between settings Patients and caregivers expect that communication channels between their surgical and nonsurgical healthcare providers are very clear, and that changes in their condition or the “next steps” are always communicated across the team members. They expect that their medical history as well as their preferences and goals of care is “shared” or known by all members of the team including their surgeon and PCP. This includes transitions when surgical care is delivered in hospitals located in different healthcare settings or states. When information flow is not rapid, automatic or seamless between care settings, surgical patients and caregivers become disillusioned and anxious regarding the care they receive from their healthcare teams. They don’t communicate not even from the same state. For example, the regional hospital did not want to provide information on surgery they performed on my leg. My doctor did not know what to do with me. The hospital had to do what they needed to do because it was an emergency. The doctor never got the CD [compact disc] of what they did with me until a doctor from the other hospital was able to find some information of what they had done to me. (Patient) It wasn’t seamless, information did not flow. I certainly didn’t feel included. There wasn’t smooth communication about the discharge between the hospital and the rehab facility. (Caregiver) Subtheme 2b: Expectation that all members of healthcare team have access to information within the medical record Patient and caregiver’s expectation that health information is shared among providers is further reinforced by the presence of an easily accessible electronic medical record (EMR). They assume that surgeons and PCPs should be able to easily access their health information in the EMR without having to ask. In particular, patients get frustrated when they are asked the same health-related questions over and over (also known as repetition fatigue [20]) and when electronic information is slow to be transferred. Every time there was a shift rotation we had to repeat the same thing over and over. I wondered why you all don’t write things down and share information. This was after the surgery. You could verify information but don’t make me repeat it. (Caregiver) Another aspect of being asked to repeat information was it made me question the care. If there is information that should have been in the chart and it wasn’t, this made me feel or question that decisions weren’t being made on the full information. (Patient) I’ve made it easy to communicate by keeping all my care in the same healthcare system. I have seen them use the EMR to get access to information. When they don’t have access to the EMR, it slows the process down. I had a lab done at an outside lab and sat in office for 1 hr to get the lab result. (Patient) Theme 3: Vulnerability during surgical transitions of care The majority of patients reported feeling scared to some degree when they were told that they needed to have surgery. Surgery is often perceived as a “matter of life or death” and this can affect care coordination, particularly during transitions before surgery (Table 3). Patients with chronic health conditions habitually come to the point of having surgery as a last result with a diagnosis that is either a surprise and or is relatively serious. If they were to not choose surgery, they “might die or other bad things could happen.” Patients often feel “they have few choices in making treatment decisions” during this care transition, “they are unclear whether they need a second or third opinion,” and their future is in the hands of the healthcare system. As a result, patients feel that many aspects of care coordination are out of their control and they rely more heavily on their primary care and surgical providers to make appropriate decisions. Subtheme 3a: Fear of dying during surgery is prevalent Even when undergoing surgery does not involve a chronic health condition that could lead to death, the fear of undergoing the surgical procedure itself affects care coordination before surgery. Patients often consider the worst-case possibility such as dying or experiencing a major complication during surgery, and care planning by the primary care or surgical teams almost never account for this level of fear and anxiety. In addition, “going under” and losing oneself is also commonly perceived by patients. They report “wondering whether they would come back normally” and if so, “would they be missing something or be suffering from pain.” Managing these expectations is a unique aspect of surgical care coordination and requires attention, support, and resources provided by the healthcare team. I went for a checkup and I was told I needed surgery. Many things came to my mind, you become scared and sad. You begin to wonder if the anesthesia will work. Or because of carelessness, a surgery that was to be very simple turns out to be very serious. What if there is an infection? A simple surgery can turn into something very tragic. A flood of questions come to your mind and also to your family. What happens if I die, what will happen to my kids? You can’t go happy into surgery. (Patient) it was a choice of living with that kind of pain or asking God to take me. The day I had surgery all 7 of my children came from as far away as San Diego and Las Vegas. That scared me, that they would see me for the last time. I was really scared (Patient) Subtheme 3b: Surgery is a foreign experience Undergoing surgery was described as a foreign experience by many patients in this study. Although many people have undergone a surgical procedure at some point in their life, or know a family member that has, each procedure is a different and unique experience. As such, undergoing surgery for each chronic health condition is described as a “new and confusing” experience for many patients due to the unique challenges associated with navigating the healthcare system. In particular, patients and their caregivers frequently complain that they do not feel that their primary care or surgical providers prepare them for surgery, and they do not know what to expect during the transitions before and after surgery. This results in coordination of care that is often described as “fragmented” between providers and care settings. I was really scared because I had never had this type of experience. I expected that they would save my daughter’s life. I thought it was a matter of life and death, and because they saw my fear they attended to me very quickly. (Caregiver) It all seemed so fast. I went from the first appointment, to meeting the surgeon to the surgery being scheduled. It all was moving so fast. Within 2–3 weeks I was having surgery. At some time, I had to make the decision whether I was really confident. It was really hard and scary. (Patient) Theme 4: Patients need to have accurate expectations of the specific processes associated with coordination of their care before and after surgery Undergoing surgery can be very disruptive to the lives of patients and their families and they need to have accurate expectations of the processes involved with care coordination before, during, and after surgery (Table 3). This includes knowing “who is going to do what, when, and where.” But patients frequently do not know what to expect and healthcare providers fail to provide them with adequate information, time to make plans, support resources, and communication channels to help coordinate their care before or after surgery. The result is that patients and caregivers are forced to be extremely vigilant right at the time that they are the most vulnerable. Subtheme 4a: Attempts by patients to prepare and assert control during care transitions are often not supported Surgery requires a great deal of planning and preparation for patients and their caretakers. They need to account for time away from work or their families during the surgical hospitalization itself and make plans for the post-discharge recovery phase as well. Patient’s functional status or mobility may also be affected during the transition following surgery and they might have to rely upon others for basic needs such as food or transportation. However, current models of surgical care coordination do not account for these factors, and surgical patients are often forced into a passive role where they react to events but do not have time to prepare for them. Patients and caregivers often get “bounced around between different hospitals and providers” without much control of how their care is delivered or who is coordinating it. This often leads to frustration and dissatisfaction with the entire healthcare system. You need to have realistic expectations and worst-case scenario. You need to know that the worst case could happen to you. I want to know that I have plans in place to cover all the options. It gives you the chance to prepare. (Patient) it all started out when she received her wound. We go to the ER here and her foot was all red and she had pain in her bones. The ER doctor said it was just a bruise go home, it happened a couple of times. I was really disappointed. Finally, they admitted her to the hospital for 4.5 days. I didn’t know who her doctor was until he came out and told me that he was going to remove her foot. And then they sent her to another hospital. I never did meet any of her doctors except for one of the surgeons. I was really uncertain about the whole experience. (Caregiver) didn’t have the chance to plan because I had only 2-weeks post-consult. I am single mother of 4 and there was a significant risk that I would die or lose my sight. I had to plan for that and prepare my children for those options. I had to make arrangements for all of those options. I was in ICU for 1 day and in hospital for 5 days. I couldn’t be alone when I came back home so my parents had to stay with me. (Patient) For me several months passed and I could not walk. I limped when I would walk so I went to the doctor and I told them that I was still limping. They told me not to worry about it because that lasts one year, and yes, that’s how long it took to begin walking normal. After a year it was like I had not had surgery. It was perfect, but it took a year. (Patient) Subtheme 4b: Patients need detailed information about their care plan The majority of patients and caregivers in this study felt that detailed information was needed from their surgical team in order to have accurate expectations of care coordination processes before and after surgery. This included having “accurate knowledge of the risks and benefits associated with their procedure, understanding what would happen to them in the hospital, and knowing what to expect during the recovery process.” This need for detailed information increases as patients assert their independence and feel more engaged with their healthcare team. Consequently, communication with the surgical team and care coordination improves when patients felt more informed and knowledgeable about their surgical condition. I have to know what is going on before I get in there. I have to know how to deal with the post-op thing. Once I get out and I think educating yourself is something that everyone needs to spend more time doing because to me it was just we were put under such unrealistic amounts of stress that it was impossible to do your job. (Patient) As a student, I prepared myself and evaluated myself to be ready before my surgery so I would not have any problems. I prepared myself but I worry about people who don’t know what to do. (Patient) knowledge is power. The more I know the more control I have, the easier it is for me not to freak out. With increased information, I feel I can interact better with my healthcare team. It is better to know, I like knowing. It helps me communicate with my care team. (Patient) Theme 5: Care coordination relies upon patient trust with the surgical team The majority of patients in this study felt that establishing a level of trust with their healthcare providers was critical to care coordination during transitions of care before and after surgery (Table 3). But in many cases, patients met their surgeon shortly before the operation and did not have much time to establish a relationship with the surgical team like they have with their PCPs. Furthermore, although trust is often established with limited background information, it needs to be supported and reaffirmed to patients and their caregivers throughout all transitions of surgical care. Subtheme 5a: Experience of the surgical team Patients believe that the success of their surgery and the quality of care coordination during transitions is dependent on the skill and experience of the surgeon and the team. In order to create trust with their providers, patients want to know the level of experience of the surgeon and their team. Furthermore, they want to know whether surgical trainees will be directly involved in their care. There is some degree of apprehension by many patients and caregivers about whether the quality of their care coordination is affected by having trainees involved. All of us enter the hospital happy and there’s always something that could go bad and will irritate you, maybe because of our ignorance of what the doctors are supposed to do, we know that at the University the clinic is staffed by students. And we know that we are exposed to the fact that a new student may be helping with the surgery so that they can also learn and be ready. (Patient) I found out he had done my procedure over 300 times. That made me very confident that he knew what he was doing. (Patient) I found my doctor from referral from friend. I was confident in his knowledge, although his bedside manner was not great. I knew he operated on athletes which gave me confidence. (Patient) Subtheme 5b: Ability to put patients’ mind at ease improves care coordination The ability to provide information that relieves anxiety and helps put patients and their caregivers at ease is an innate social skill that helps support care coordination during transitions of care. A lot of patients are worried about surgery and a surgeon’s “bedside manner” can whether help alleviate or exacerbate concerns. In addition, this social behavior can affect how well information is communicated and received by patients and caregivers during care transitions. I think for my husband, he’s the type of person who is scared of surgery so having to put it off for quite some time and seeing this doctor and his staff making him feel comfortable and let him know that it was not as bad as he thought with the horror stories he has heard before they made him feel really comfortable enough to go ahead and schedule the surgery and go through with it because previous consultations were not successful. (Caregiver) we came with a yellow pad packed full of questions because he was so worried about the surgery. The surgeon and his student took all the time he needed and all his questions were answered. I was so grateful that he took the time we needed. That is what gave us the confidence. (Caregiver) DISCUSSION The coordination of care for patients with chronic disease commonly involves multiple transitions between primary care and acute-care surgical providers. These transitions before and after surgery often occur often cross-care settings, providers, and information systems and may create both barriers or supports for patients and their caregivers. We identified five main themes that characterize how patients and their caregivers perceive care coordination during transitions of surgical care as a consequence of these barriers or supports. The results of this exploratory study suggest that patients feel especially vulnerable during transitions between providers before and after surgery and require extra efforts by the healthcare team to establish trust, define expectations of care, and support effective care coordination processes. Interventions directed at improving care coordination for patients with chronic disease need to account for frequent transitions across the entire episode of surgical care, and the factors that define the care experience for patients and their caregivers. Identifying these factors will help improve patient satisfaction and clinical outcomes. It is well recognized that care coordination during transitions need to be optimized for patients with multiple chronic health conditions in order to achieve the best clinical outcomes. The Joint Commission, the Centers for Medicare and Medicaid (CMS), and the Institute of Medicine (IOM) have all identified care coordination during transitions of care as one of the keys to improving the effectiveness and safety of our U.S. healthcare system [21]. Furthermore, transition care programs for vulnerable patients were incentivized by passage of the Patient Protection and Affordable Care Act of 2010 [22]. This has resulted in the development of multiple strategies to improve care coordination during transitions between outpatient and inpatient settings for older patients with multiple chronic disease conditions [23]. Although multiple strategies have been proposed to improve care coordination for medically complex older patients during transitions of care, it is unclear what strategies are most effective for patients undergoing surgery. Our study illustrates the factors deemed to be most important to patients and caregivers during transitions of surgical care, which may help develop new patient-centered strategies for surgical patients. To start, our results show that care coordination is defined during surgical transitions by the relationship and interactions between the surgeon and patient/caregiver. This includes elements of trust, expectations, information exchange, collaboration, and patient vulnerability. Both the primary care and surgical teams must acknowledge and define a patient-centered care plan for how they will address these different needs of the patient and their caregiver. In addition, patients and caregivers need to be made aware of communication issues that will likely affect care coordination, so they can spot problems when they arise, act as their own advocates, and assure their providers have necessary information to provide effective care. Second, our study identifies several areas where surgical care coordination is unique and should be approached differently than when transitions occur for nonsurgical conditions. For example, patients’ perception of fear and vulnerability is common and results from the inherent risks of each type of surgery. These emotions may prevent patients from retaining important information regarding their treatment plan during transitions and must be recognized by the providers who are coordinating their care. One approach does not fit all types of patients, and strategies for surgical patients need to focus on delivering personalized care that is specific to the surgical encounter. Communication processes are known to form a key component of shared decision making for patients with chronic healthcare needs, and allowing their providers to deliver patient-centered care coordination [24]. The importance of effective communication with surgical providers was also reinforced by participants during our focus group sessions. From the patient’s perspective, this involves efforts by their surgeon to elicit, understand, and validate their goals, involve them in the decision-making process to the extent desired, and provide clear and understandable explanations of their surgical care. Establishing open communication with the surgical team was felt by patients and caregivers to foster a relationship characterized by trust and commitment [25, 26]. Care coordination also requires active participation by the patient and caregivers, including asking questions, stating preferences, expressing concerns, conveying understanding, and providing their goals of care [27, 28]. Another facet of care coordination discerned by patients is the quality of communication among their different healthcare providers. Prior studies have shown that communication errors are common between providers from different specialties, particularly when exchanging health information on patients with multiple health conditions [29–31]. Miscommunication affects the continuity, quality, and timeliness of care coordination for patients and caregivers [30, 32], which was similarly reported in our study. However, efforts to standardize communication during transitions are difficult, and most circumstances do not allow direct methods of communication between surgical and nonsurgical providers such as face-to-face, telephone, or video-linked conversation [33]. In most instances, providers are separated in time and space and must rely exclusively upon electronic methods such as the electronic health record (EHR) as the primary means to exchange clinical information after a visit with one provider and before a visit with another provider [34, 35]. As discussed in our study, patients often erroneously assume that information exchange is seamless when the EHR is used. However, provider communication using current EHR technology is known to be error-prone, including inaccurate assumptions about the intent and motivation of transfer, insufficient information, inappropriate referrals, and poor agreement about care plans [34–37]. Future EHR systems are being designed to address these limitations and may consequently improve how patients’ perceive coordination of their care between different providers in the healthcare system. There are several limitations to this study, which are inherent to focus-group methodology. First, due to the limited number of overall participants, the exploration of opinions may be more superficial than in other study designs and may be subject to selection bias. As such, the findings from this study may lack reliability, validity, and/or generalizability. Second, although focus groups were conducted in both rural and urban communities within the Intermountain West, the values of these patients and caregivers may not be generalizable to surgical populations in other regions of the USA. Third, the responses of patient and caregivers during focus groups may be more reflective of their overall care experience with surgery rather than the quality of their care coordination per se. Fourth, the majority of participants were exposed to major surgical procedures (Table 1), and the themes that emerged may not be relevant to care coordination for minor surgical procedures. And finally, focus groups are sensitive to group dynamics, which can lead to group censoring. We tried to avoid this bias by regularly asking all participants to give their opinions and responses to questions. CONCLUSIONS The coordination of chronic patient care frequently involves transitions between primary care and surgical specialists and different care settings. Surgical patients and caregivers frequently feel vulnerable during these transitions and require care coordination processes involving informatics infrastructure, trust, patient education, and information exchange between providers. Unfortunately, this level of patient-centered care coordination is too often deficient during transitions of surgical care. These factors need to be taken into consideration when coordinating care for patients undergoing surgery and developing new interventions to make care coordination more patient-centered during these care transitions. Compliance with Ethical Standards Conflict of Interest: None declared. Primary Data: The data reported in this study have not been previously reported or published, and the manuscript is not being simultaneously submitted elsewhere. The authors have full control of all primary data and agree to allow TBM to review this data if requested. Author Contributions: All authors have seen this manuscript, agreed to the content of this manuscript, and agree with its submission for publication. Ethical Approval: The study protocol was approved by the University of Utah Institutional Review Board, and all procedures involving human participants were in accordance with the ethical standards of the institutional and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. This article does not contain any studies with animals performed by any of the authors. Informed Consent: Informed consent was obtained from all individual participants included in the study. Acknowledgments The study was funded by the first author and received no external funding sources. APPENDIX 1. SCRIPT USED FOR FOCUS GROUP SESSIONS Primary Purpose: To identify barriers and facilitators that influence the success of care coordination during transitions from inpatient to outpatient care, and between primary care and specialty surgical care. Individual Introductions: Name, where you live, occupation, type of surgery, what services did you (or patient you care for) receive? How long ago was episode of surgical care? Explain Stick Faces (1–5 scale) 1. Draw a picture: we’re here today to understand your special experience as a surgical patient, draw a picture that describes with as much detail as possible feelings you had when your primary care physician referred you to the surgeon. Be sure to label all items. Include such items as what made you feel confident, scared, comforted, or inconvenienced. Brainstorming session: What did I expect, what didn’t I expect sheet. We are now going to go around the room and ask you to share what comes to your mind with the following phrase: When I found out I was going to have surgery, I expected: ______________________________ What I didn’t expect when I found out I was going to have surgery was________________________ 2. Stick Face:Prior to my surgical consult, I felt confident about the surgeon I was being referred to by my PCP. a. What factors influenced your choice of surgeon? Did you seek a second opinion or see several surgeons before selecting one? Discuss. 3. Stick Face:As a surgery patient, my healthcare providers did everything possible to coordination my care and make it convenient for me during the transition before surgery. b. What inconveniences did I experience as a surgery patient before going to the hospital? Discuss. c. What surprises did I have as a surgery patient before going to the hospital? Discuss. 4. Stick Face:As a surgery patient, my healthcare providers did everything possible to coordination my care and make it convenient for me after my surgery. d. What inconveniences did I experience after my surgery? Discuss. e. What surprises did I experience after my surgery? Discuss. f. Did you feel that information about your surgery was effectively communicated to your primary care doctors or other doctors that take care of your long-term conditions? g. Did your family or care giver experienced inconveniences before/during or after your surgery? 5. Describe your expectations for care coordination before and after surgery and give examples of excellent care with regard to your entire surgical care experience. 6. If you could change one thing, what could most improve the experience for surgical patients like you during the transitions before and after surgery? References 1. U.S. Department of Health and Human Services . 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Translational Behavioral MedicineOxford University Press

Published: May 23, 2018

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