TY - JOUR
AU - Dy, Sydney M
AB - Abstract Objective Despite increasing use of hematopoietic stem cell transplantation (HSCT) for adults with sickle cell disease (SCD), little is known about pain management experiences throughout this process. The objective of this study was to explore patients’ experiences with pain and pain management during and after HSCT for SCD. Methods We conducted a qualitative interview study with 10 patients who underwent HSCT for SCD. We transcribed interviews verbatim and inductively identified codes. We used thematic analysis alongside a constant comparative method to develop and refine a codebook that aided in the identification of themes. Results Four key themes emerged. (1) The pain trajectory: patients described a fluctuating course of pain during HSCT, which often extended long afterwards and impacted all aspects of life, particularly affected by pre-HSCT experiences; (2) The role of opioids—a double-edged sword: patients described opioids as reducing pain but insufficiently to balance significant adverse effects and burden; (3) Patient-centered decision making in pain management: patients described insufficient agency in decisions about opioid use and weaning; and (4) Consequences of health-related stigma: patients described experiences with stigma, mainly related to opioid use and weaning, as similar to pre-HSCT. Conclusions From the perspective of patients who have undergone HSCT for SCD, clinicians should use a patient-centered approach, integrating non-opioid approaches into pain management, particularly psychosocial support. As transplant for SCD becomes increasingly available, incorporating patient perspectives may improve health care delivery and overall patient experiences. Sickle Cell Disease, Pain, Opioids Introduction Sickle cell disease (SCD) is the most common inherited blood disease in the United States, affecting approximately 100,000 Americans [1, 2]. Although acute painful vaso-occlusive crises are the most common reason for healthcare encounters, chronic pain is also prevalent [3]. In one study, patients with SCD reported pain on over 50% of patient days, with approximately 30% of patients reporting pain on more than 95% of days [4]. Opioids are a key treatment for severe acute and chronic pain in SCD but pose significant risks either due to frequent utilization or long-term use, as highlighted by the current opioid epidemic [5]. Currently, hematopoietic stem cell transplantation (HSCT) is the only curative option for adults with SCD. New research has shown that HSCT can be successful in adults with frequent, painful crises and/or other severe complications and is increasingly feasible using novel platforms for related donors [6–9]. Despite increasing numbers of adults with SCD undergoing HSCT, research about pain experiences has focused on the quantity of opioid use and numerical pain ratings [6, 10]. No research has yet evaluated patients’ experiences with pain and its management during and after HSCT. Soliciting adult patients’ experiences about their pain after HSCT therefore offers a unique opportunity to understand the perspectives of highly engaged patients regarding both severe acute and chronic pain as well as high-dose, and often chronic, opioid use. As HSCT for SCD becomes more widely available, a better understanding of how to better manage pain and opioid use through this process may help to optimize patient experiences and outcomes. Using a qualitative approach, our objective was to explore patients’ experiences with pain and pain management, particularly with opioids, both during and after HSCT for SCD. Methods Subjects and Study Design We conducted semistructured, qualitative interviews using criteria for high quality, methodologically rigorous reports of qualitative oncology research with 10 adult patients from a single academic medical center from August 2016 through February 2018 [11]. We recruited patients from an ongoing sickle cell HSCT clinical trial. In brief, patients received anti-thymocyte globulin (rabbit derived) 0.5 mg/kg on day -9 and 2 mg/kg on days -8 and -7; intravenous fludarabine 30 mg/m2 on days -6 to -2, intravenous cyclophosphamide 14.5 mg/kg on days -6 and -5, and total body irradiation either 200 or 400 cGy on day -1. Unmanipulated bone marrow was collected and infused on day 0. GvHD prophylaxis consisted of cyclophosphamide 50 mg/kg/day on days +3 and +4, and sirolimus to maintain a level of 5–15 ng/dl (for one year) and mycophenolate mofetil 1 gram every 8 hours (until day 35) were started on day 5. Relatives who shared at least one HLA haplotype with the patient, did not have SCD or thalassemia major or intermedia, and were in good health were allowed to serve as donors. Further details about the sickle cell HSCT clinical trial are published elsewhere [7]. We included patients who were 18 years of age or older, enrolled in the institution’s sickle cell HSCT clinical trial during the study period, were at least one-year post-HSCT for SCD, able to speak English or Arabic fluently, and willing to participate in a 30–60 minute interview. The primary HSCT team determined patient eligibility, explained the goal of the study, and asked patients’ permission for future contact by the research team. When patients agreed to be contacted by the research team, the research team reached out to patients either by telephone or email using multiple attempts (up to three times). The research team scheduled the interview day and time with the patient according to patient preference and also shared the verbal consent script via email. Patients were consented via an oral consent process on the day of the interview prior to the start of the interview. We did not offer compensation. This study was approved by the Johns Hopkins Bloomberg School of Public Health Institutional Review Board. Data Collection We conducted one-time, semi-structured in person or telephone interviews using an interview guide (Table 1), developed based on previous qualitative studies on opioid use and sickle cell pain, querying perceptions of distress, side effects, and communication about pain and pain management, particularly as applied to opioid use [12, 13]. The interview guide included both open-ended and probing questions to elicit detail and seek clarity and confirmation of patients’ responses. Two qualitatively trained research team members were present in most interviews; one conducted the interview and another team member was present to take notes. The interviewer was not involved in the direct clinical care of the patients interviewed. If conducted by telephone, we notified patients that two research team members were present over the phone before initiating the interview. After obtaining consent, all interviews were audio-recorded and transcribed verbatim by a professional transcriptionist. Table 1. Interview questions Opening question: Tell me a little about your experience with sickle cell disease and the transplantation process, particularly about pain and its treatment, including the use of opioids. We are particularly interested in the time after your transplant, but please feel free to share previous experiences as well. (Probes to follow with issues that come up) . Impact of pain management and opioids: Can you tell me what impact the pain management you received had on you over the course of your experience? (If the issue doesn’t come up—Can you tell me about the impact of opioids?) (Probes for good experiences or care and bad experiences or care—helping to do what you want to do, how they helped, how acceptable it was to you to take them, guilt, stigma, burdens and side effects) (Try to focus more on the post-transplant period) Coming off opioids: Can you tell me about the experience of coming off opioids (or considering coming off opioids)? (Probes for how decision was made, what steps were taken to wean or discontinue, the physical experience, distress and other effects) Interacting with providers about pain management and opioids: What has worked well in your experiences with providers and your pain management? What hasn’t worked well? (If the issue doesn’t come up—Can you tell me about the impact of opioids?) (Probes for communication, shared decision making, initiation, maintenance, and discontinuation, continuity and access, management of side effects) (Try to focus on the post-transplant period) How do you think your pain management could have been improved? (Probes again for use of opioids, and for same set of issues) Is there anything else about your pain, pain management, opioids, or your post-transplant care in general that you’d like to share? Opening question: Tell me a little about your experience with sickle cell disease and the transplantation process, particularly about pain and its treatment, including the use of opioids. We are particularly interested in the time after your transplant, but please feel free to share previous experiences as well. (Probes to follow with issues that come up) . Impact of pain management and opioids: Can you tell me what impact the pain management you received had on you over the course of your experience? (If the issue doesn’t come up—Can you tell me about the impact of opioids?) (Probes for good experiences or care and bad experiences or care—helping to do what you want to do, how they helped, how acceptable it was to you to take them, guilt, stigma, burdens and side effects) (Try to focus more on the post-transplant period) Coming off opioids: Can you tell me about the experience of coming off opioids (or considering coming off opioids)? (Probes for how decision was made, what steps were taken to wean or discontinue, the physical experience, distress and other effects) Interacting with providers about pain management and opioids: What has worked well in your experiences with providers and your pain management? What hasn’t worked well? (If the issue doesn’t come up—Can you tell me about the impact of opioids?) (Probes for communication, shared decision making, initiation, maintenance, and discontinuation, continuity and access, management of side effects) (Try to focus on the post-transplant period) How do you think your pain management could have been improved? (Probes again for use of opioids, and for same set of issues) Is there anything else about your pain, pain management, opioids, or your post-transplant care in general that you’d like to share? Open in new tab Table 1. Interview questions Opening question: Tell me a little about your experience with sickle cell disease and the transplantation process, particularly about pain and its treatment, including the use of opioids. We are particularly interested in the time after your transplant, but please feel free to share previous experiences as well. (Probes to follow with issues that come up) . Impact of pain management and opioids: Can you tell me what impact the pain management you received had on you over the course of your experience? (If the issue doesn’t come up—Can you tell me about the impact of opioids?) (Probes for good experiences or care and bad experiences or care—helping to do what you want to do, how they helped, how acceptable it was to you to take them, guilt, stigma, burdens and side effects) (Try to focus more on the post-transplant period) Coming off opioids: Can you tell me about the experience of coming off opioids (or considering coming off opioids)? (Probes for how decision was made, what steps were taken to wean or discontinue, the physical experience, distress and other effects) Interacting with providers about pain management and opioids: What has worked well in your experiences with providers and your pain management? What hasn’t worked well? (If the issue doesn’t come up—Can you tell me about the impact of opioids?) (Probes for communication, shared decision making, initiation, maintenance, and discontinuation, continuity and access, management of side effects) (Try to focus on the post-transplant period) How do you think your pain management could have been improved? (Probes again for use of opioids, and for same set of issues) Is there anything else about your pain, pain management, opioids, or your post-transplant care in general that you’d like to share? Opening question: Tell me a little about your experience with sickle cell disease and the transplantation process, particularly about pain and its treatment, including the use of opioids. We are particularly interested in the time after your transplant, but please feel free to share previous experiences as well. (Probes to follow with issues that come up) . Impact of pain management and opioids: Can you tell me what impact the pain management you received had on you over the course of your experience? (If the issue doesn’t come up—Can you tell me about the impact of opioids?) (Probes for good experiences or care and bad experiences or care—helping to do what you want to do, how they helped, how acceptable it was to you to take them, guilt, stigma, burdens and side effects) (Try to focus more on the post-transplant period) Coming off opioids: Can you tell me about the experience of coming off opioids (or considering coming off opioids)? (Probes for how decision was made, what steps were taken to wean or discontinue, the physical experience, distress and other effects) Interacting with providers about pain management and opioids: What has worked well in your experiences with providers and your pain management? What hasn’t worked well? (If the issue doesn’t come up—Can you tell me about the impact of opioids?) (Probes for communication, shared decision making, initiation, maintenance, and discontinuation, continuity and access, management of side effects) (Try to focus on the post-transplant period) How do you think your pain management could have been improved? (Probes again for use of opioids, and for same set of issues) Is there anything else about your pain, pain management, opioids, or your post-transplant care in general that you’d like to share? Open in new tab Data Analyses All transcripts were entered into the MAXQDA 12 qualitative data analysis software to aid in managing and analyzing the data (VERBI Software GmbH, Berlin, Germany). We used thematic analysis to identify, analyze, describe, and report emergent themes (patterns) in our data [14]. After the first three interviews were completed, we convened to review transcripts and interview notes and discuss salient meanings or thoughts from those interviews. A codebook was developed, which included codes and subcodes, in addition to a detailed description of each code. Further refinement of codes and their descriptions took place throughout the data collection process where research team members convened regularly to refine coding definitions. To ensure trustworthiness and stability in our codebook system, two coders coded 30% of all transcripts independently and resolved any discrepancies by consensus discussion [15]. After all interviews were coded, we analyzed each interview individually, organizing the coded data into emergent themes. We then compared the themes across all interviews as related to our research question. We further expanded on these themes by iteratively refining the concepts generated from our data and taking into consideration the specific context to help conceptualize salient aspects of patients’ experiences as related to our research question. To ensure rigor in our qualitative methodology, we conducted frequent team discussions regarding generated themes with all research team members, including physicians and pharmacists who had experience in pain management and cared for patients with SCD through the HSCT process, to make sure all themes were well-articulated and cohesive [15–18]. Results A total of 25 patients were eligible for inclusion in this study. Two patients refused, 5 were contacted but did not respond and 8 were unable to be contacted. Demographics of patients included in the study are included in Table 2. Four key themes emerged from our analyses of patients’ experiences with pain and pain management during and after the HSCT process: (1) The pain trajectory; (2) the role of opioids—a double-edged sword; (3) patient-centered decision making in pain management; and (4) consequences of health-related stigma. Representative quotes are provided in Table 3. Table 2. Patient demographics (n = 10). Age, years (mean, range) . 35 (20–43) . Female (n, %) 7 (70) Hemoglobin SS (n, %) 9 (90) Hemoglobin S/beta thalassemia (n, %) 1 (10) Engraftment successful (n, %) 8 (80) Age, years (mean, range) . 35 (20–43) . Female (n, %) 7 (70) Hemoglobin SS (n, %) 9 (90) Hemoglobin S/beta thalassemia (n, %) 1 (10) Engraftment successful (n, %) 8 (80) Open in new tab Table 2. Patient demographics (n = 10). Age, years (mean, range) . 35 (20–43) . Female (n, %) 7 (70) Hemoglobin SS (n, %) 9 (90) Hemoglobin S/beta thalassemia (n, %) 1 (10) Engraftment successful (n, %) 8 (80) Age, years (mean, range) . 35 (20–43) . Female (n, %) 7 (70) Hemoglobin SS (n, %) 9 (90) Hemoglobin S/beta thalassemia (n, %) 1 (10) Engraftment successful (n, %) 8 (80) Open in new tab Table 3. Themes describing patients’ perspectives on pain and pain management with HSCT for sickle cell disease and sample quotations Themes . Illustrative Quotes . The pain trajectory “Pain [that] is inside the bones and I feel like it’s with every single beat that would come and it’s continuous. Never stops.” (Patient 7) “Whole body pains, different from sickle cell” (Patient 2) “And it was not controlled…Especially from where I came from, which was always manageable pain.” (Patient 1) “My pain was very high at the time. Even worse than when I had sickle cell.” (Patient 4) “So the pain that I was dealing with during the transplant process was really no different than the pain I had already experienced.” (Patient 3) “And the pain was also…it was bad, I’m not going to lie. It was bad, but it wasn’t as bad as sickle cell pain.” (Patient 2) “Yeah so during that year [first year after transplant], my pain definitely increased. I would say but after the year was over, I still had significant amount of pain. It took about 2 years before my body went back to normal.” (Patient 4) “I didn’t have any pain crisis. I started to realize it 3 or 5 months [after transplant].” (Patient 7) “I think it was within the 6 month period that I felt as though I didn’t need the pain medication anymore.” (Patient 3) 2. The role of opioids—a double-edged sword “It was very effective. Don’t get me wrong, but it was creating other problems.” (Patient 2) “I feel like it makes me feel horrible and it doesn’t really help at all …. the opioids that they put me on which were so high and still wasn’t enough …” (Patient 1) “I hated the way it made me feel, like I would get really groggy and like really woozy. I just hated the way my body felt after taking the medication.” (Patient 4) “Well, they didn’t help and the idea of how addictive substances were being pushed so into my body and it still wasn’t helping. Like that could’ve been…that could’ve ended up another way for me.” (Patient 1) “And within the past 9 months, I’ve started to focus very heavily on my emotional, mental, and spiritual health…If I were able to participate in something like that while I was going through that process, I probably would’ve been stronger.” (Patient 5) “I do think that some element of emotional or mental preparedness or management included in pain management or the overall transplant process would be extremely beneficial to a lot of people. Because there’s so many things that you are not prepared for. There are so many things. The caregivers, as well. There are so many monkey wrenches to be thrown into the plan. And it leaves you kind of feeling like … will this ever end … should I have done this? Was I better off just having sickle cell?” (Patient 5) 3. Patient-lefted decision making in pain management “It was just too much sometimes…I was scared, honestly. They would say, ‘Okay, you know what, we’re going to raise the dosage level.’ So I would look at them and like, ‘Are you sure?’ I’m a small, petite person, you know.” (Patient 2) “I’ve told them many times I don’t want to be on this medicine and every time I mentioned it, I was shot down completely. Like this medicine is the only option and that’s all we’re going to do. And it’s just like you have to work with us. We’re the patients and stuff. We’re not telling you what to do, but we’re telling you how we feel about certain things and we’re the ones that have to live with it.” (Patient10) “But then when we decided to quit it…some of the doctors did not condone it. They didn’t want me to stop it. So my mom was like, well, we don’t want it if we have to quit it, can we get some help? But, here, you know, we felt like, okay, when it’s time for you to get her the pain medicines you offered, and when it’s time for us to quit it, nobody wants to help us.” (Patient 2) “I had the desire that I want the medication. And I have the ambition to stop taking that thing and not to be like this. And it was like…between those things…I felt so lost.” (Patient 7) “I definitely was overmedicating myself. And because of that I would run out quickly and then I would go through withdrawals because I would run out quickly. But the formula of doubling up on the medications because you can, and then you end up running out faster, you don’t think about the fact that, what are you going to do when you have to go back to the doctor and tell them that you don’t have anymore? (Patient 5) 4. Consequences of health-related stigma “I learned to channel that frustration into other means of letting medical professionals know that I’m not a drug addict. And like by that, I would wear my college sweater to the emergency room. Like when I’m in pain, before I’m leaving, or before I’m getting in an ambulance, I’m finding clothing and items that will let people know that I’m a real person.” (Patient 5) “I remember going to the hospital, I got really depressed because they [doctors] thought I was coming to the hospital to try to get out of school. So, I told them I’m in a lot of pain and I feel like something bad is going to happen. And I said you don’t even have to give me pain medicine, I just really need to stay because I know my body better than everyone, and they just wouldn’t believe me.” (Patient10) “But when we went there [rehab facility], before my mom left, the doctors explained to my mom that I would have to be there for three weeks and no visitations. I wouldn’t have to see anybody. I felt like, well, here I am, and I’m about to be considered as if I’m a drug addict or I’m a druggy. So I didn’t like feeling that way or having people think I was just abusing these narcotics when I didn’t. I had been just taking it for so long and here I am quitting it.” (Patient 2) “When I came home and wanted to go to meetings and read books or listen to certain music, there was always a negative mention of, I don’t want to deal with that rehab stuff or I don’t want to listen to that. So I had no support. Coming home, trying to stay sober, and just reeling through that experience… his [referring to husband’s] family has turned against me and was judging me … and all this stuff.” (Patient 5) Themes . Illustrative Quotes . The pain trajectory “Pain [that] is inside the bones and I feel like it’s with every single beat that would come and it’s continuous. Never stops.” (Patient 7) “Whole body pains, different from sickle cell” (Patient 2) “And it was not controlled…Especially from where I came from, which was always manageable pain.” (Patient 1) “My pain was very high at the time. Even worse than when I had sickle cell.” (Patient 4) “So the pain that I was dealing with during the transplant process was really no different than the pain I had already experienced.” (Patient 3) “And the pain was also…it was bad, I’m not going to lie. It was bad, but it wasn’t as bad as sickle cell pain.” (Patient 2) “Yeah so during that year [first year after transplant], my pain definitely increased. I would say but after the year was over, I still had significant amount of pain. It took about 2 years before my body went back to normal.” (Patient 4) “I didn’t have any pain crisis. I started to realize it 3 or 5 months [after transplant].” (Patient 7) “I think it was within the 6 month period that I felt as though I didn’t need the pain medication anymore.” (Patient 3) 2. The role of opioids—a double-edged sword “It was very effective. Don’t get me wrong, but it was creating other problems.” (Patient 2) “I feel like it makes me feel horrible and it doesn’t really help at all …. the opioids that they put me on which were so high and still wasn’t enough …” (Patient 1) “I hated the way it made me feel, like I would get really groggy and like really woozy. I just hated the way my body felt after taking the medication.” (Patient 4) “Well, they didn’t help and the idea of how addictive substances were being pushed so into my body and it still wasn’t helping. Like that could’ve been…that could’ve ended up another way for me.” (Patient 1) “And within the past 9 months, I’ve started to focus very heavily on my emotional, mental, and spiritual health…If I were able to participate in something like that while I was going through that process, I probably would’ve been stronger.” (Patient 5) “I do think that some element of emotional or mental preparedness or management included in pain management or the overall transplant process would be extremely beneficial to a lot of people. Because there’s so many things that you are not prepared for. There are so many things. The caregivers, as well. There are so many monkey wrenches to be thrown into the plan. And it leaves you kind of feeling like … will this ever end … should I have done this? Was I better off just having sickle cell?” (Patient 5) 3. Patient-lefted decision making in pain management “It was just too much sometimes…I was scared, honestly. They would say, ‘Okay, you know what, we’re going to raise the dosage level.’ So I would look at them and like, ‘Are you sure?’ I’m a small, petite person, you know.” (Patient 2) “I’ve told them many times I don’t want to be on this medicine and every time I mentioned it, I was shot down completely. Like this medicine is the only option and that’s all we’re going to do. And it’s just like you have to work with us. We’re the patients and stuff. We’re not telling you what to do, but we’re telling you how we feel about certain things and we’re the ones that have to live with it.” (Patient10) “But then when we decided to quit it…some of the doctors did not condone it. They didn’t want me to stop it. So my mom was like, well, we don’t want it if we have to quit it, can we get some help? But, here, you know, we felt like, okay, when it’s time for you to get her the pain medicines you offered, and when it’s time for us to quit it, nobody wants to help us.” (Patient 2) “I had the desire that I want the medication. And I have the ambition to stop taking that thing and not to be like this. And it was like…between those things…I felt so lost.” (Patient 7) “I definitely was overmedicating myself. And because of that I would run out quickly and then I would go through withdrawals because I would run out quickly. But the formula of doubling up on the medications because you can, and then you end up running out faster, you don’t think about the fact that, what are you going to do when you have to go back to the doctor and tell them that you don’t have anymore? (Patient 5) 4. Consequences of health-related stigma “I learned to channel that frustration into other means of letting medical professionals know that I’m not a drug addict. And like by that, I would wear my college sweater to the emergency room. Like when I’m in pain, before I’m leaving, or before I’m getting in an ambulance, I’m finding clothing and items that will let people know that I’m a real person.” (Patient 5) “I remember going to the hospital, I got really depressed because they [doctors] thought I was coming to the hospital to try to get out of school. So, I told them I’m in a lot of pain and I feel like something bad is going to happen. And I said you don’t even have to give me pain medicine, I just really need to stay because I know my body better than everyone, and they just wouldn’t believe me.” (Patient10) “But when we went there [rehab facility], before my mom left, the doctors explained to my mom that I would have to be there for three weeks and no visitations. I wouldn’t have to see anybody. I felt like, well, here I am, and I’m about to be considered as if I’m a drug addict or I’m a druggy. So I didn’t like feeling that way or having people think I was just abusing these narcotics when I didn’t. I had been just taking it for so long and here I am quitting it.” (Patient 2) “When I came home and wanted to go to meetings and read books or listen to certain music, there was always a negative mention of, I don’t want to deal with that rehab stuff or I don’t want to listen to that. So I had no support. Coming home, trying to stay sober, and just reeling through that experience… his [referring to husband’s] family has turned against me and was judging me … and all this stuff.” (Patient 5) Open in new tab Table 3. Themes describing patients’ perspectives on pain and pain management with HSCT for sickle cell disease and sample quotations Themes . Illustrative Quotes . The pain trajectory “Pain [that] is inside the bones and I feel like it’s with every single beat that would come and it’s continuous. Never stops.” (Patient 7) “Whole body pains, different from sickle cell” (Patient 2) “And it was not controlled…Especially from where I came from, which was always manageable pain.” (Patient 1) “My pain was very high at the time. Even worse than when I had sickle cell.” (Patient 4) “So the pain that I was dealing with during the transplant process was really no different than the pain I had already experienced.” (Patient 3) “And the pain was also…it was bad, I’m not going to lie. It was bad, but it wasn’t as bad as sickle cell pain.” (Patient 2) “Yeah so during that year [first year after transplant], my pain definitely increased. I would say but after the year was over, I still had significant amount of pain. It took about 2 years before my body went back to normal.” (Patient 4) “I didn’t have any pain crisis. I started to realize it 3 or 5 months [after transplant].” (Patient 7) “I think it was within the 6 month period that I felt as though I didn’t need the pain medication anymore.” (Patient 3) 2. The role of opioids—a double-edged sword “It was very effective. Don’t get me wrong, but it was creating other problems.” (Patient 2) “I feel like it makes me feel horrible and it doesn’t really help at all …. the opioids that they put me on which were so high and still wasn’t enough …” (Patient 1) “I hated the way it made me feel, like I would get really groggy and like really woozy. I just hated the way my body felt after taking the medication.” (Patient 4) “Well, they didn’t help and the idea of how addictive substances were being pushed so into my body and it still wasn’t helping. Like that could’ve been…that could’ve ended up another way for me.” (Patient 1) “And within the past 9 months, I’ve started to focus very heavily on my emotional, mental, and spiritual health…If I were able to participate in something like that while I was going through that process, I probably would’ve been stronger.” (Patient 5) “I do think that some element of emotional or mental preparedness or management included in pain management or the overall transplant process would be extremely beneficial to a lot of people. Because there’s so many things that you are not prepared for. There are so many things. The caregivers, as well. There are so many monkey wrenches to be thrown into the plan. And it leaves you kind of feeling like … will this ever end … should I have done this? Was I better off just having sickle cell?” (Patient 5) 3. Patient-lefted decision making in pain management “It was just too much sometimes…I was scared, honestly. They would say, ‘Okay, you know what, we’re going to raise the dosage level.’ So I would look at them and like, ‘Are you sure?’ I’m a small, petite person, you know.” (Patient 2) “I’ve told them many times I don’t want to be on this medicine and every time I mentioned it, I was shot down completely. Like this medicine is the only option and that’s all we’re going to do. And it’s just like you have to work with us. We’re the patients and stuff. We’re not telling you what to do, but we’re telling you how we feel about certain things and we’re the ones that have to live with it.” (Patient10) “But then when we decided to quit it…some of the doctors did not condone it. They didn’t want me to stop it. So my mom was like, well, we don’t want it if we have to quit it, can we get some help? But, here, you know, we felt like, okay, when it’s time for you to get her the pain medicines you offered, and when it’s time for us to quit it, nobody wants to help us.” (Patient 2) “I had the desire that I want the medication. And I have the ambition to stop taking that thing and not to be like this. And it was like…between those things…I felt so lost.” (Patient 7) “I definitely was overmedicating myself. And because of that I would run out quickly and then I would go through withdrawals because I would run out quickly. But the formula of doubling up on the medications because you can, and then you end up running out faster, you don’t think about the fact that, what are you going to do when you have to go back to the doctor and tell them that you don’t have anymore? (Patient 5) 4. Consequences of health-related stigma “I learned to channel that frustration into other means of letting medical professionals know that I’m not a drug addict. And like by that, I would wear my college sweater to the emergency room. Like when I’m in pain, before I’m leaving, or before I’m getting in an ambulance, I’m finding clothing and items that will let people know that I’m a real person.” (Patient 5) “I remember going to the hospital, I got really depressed because they [doctors] thought I was coming to the hospital to try to get out of school. So, I told them I’m in a lot of pain and I feel like something bad is going to happen. And I said you don’t even have to give me pain medicine, I just really need to stay because I know my body better than everyone, and they just wouldn’t believe me.” (Patient10) “But when we went there [rehab facility], before my mom left, the doctors explained to my mom that I would have to be there for three weeks and no visitations. I wouldn’t have to see anybody. I felt like, well, here I am, and I’m about to be considered as if I’m a drug addict or I’m a druggy. So I didn’t like feeling that way or having people think I was just abusing these narcotics when I didn’t. I had been just taking it for so long and here I am quitting it.” (Patient 2) “When I came home and wanted to go to meetings and read books or listen to certain music, there was always a negative mention of, I don’t want to deal with that rehab stuff or I don’t want to listen to that. So I had no support. Coming home, trying to stay sober, and just reeling through that experience… his [referring to husband’s] family has turned against me and was judging me … and all this stuff.” (Patient 5) Themes . Illustrative Quotes . The pain trajectory “Pain [that] is inside the bones and I feel like it’s with every single beat that would come and it’s continuous. Never stops.” (Patient 7) “Whole body pains, different from sickle cell” (Patient 2) “And it was not controlled…Especially from where I came from, which was always manageable pain.” (Patient 1) “My pain was very high at the time. Even worse than when I had sickle cell.” (Patient 4) “So the pain that I was dealing with during the transplant process was really no different than the pain I had already experienced.” (Patient 3) “And the pain was also…it was bad, I’m not going to lie. It was bad, but it wasn’t as bad as sickle cell pain.” (Patient 2) “Yeah so during that year [first year after transplant], my pain definitely increased. I would say but after the year was over, I still had significant amount of pain. It took about 2 years before my body went back to normal.” (Patient 4) “I didn’t have any pain crisis. I started to realize it 3 or 5 months [after transplant].” (Patient 7) “I think it was within the 6 month period that I felt as though I didn’t need the pain medication anymore.” (Patient 3) 2. The role of opioids—a double-edged sword “It was very effective. Don’t get me wrong, but it was creating other problems.” (Patient 2) “I feel like it makes me feel horrible and it doesn’t really help at all …. the opioids that they put me on which were so high and still wasn’t enough …” (Patient 1) “I hated the way it made me feel, like I would get really groggy and like really woozy. I just hated the way my body felt after taking the medication.” (Patient 4) “Well, they didn’t help and the idea of how addictive substances were being pushed so into my body and it still wasn’t helping. Like that could’ve been…that could’ve ended up another way for me.” (Patient 1) “And within the past 9 months, I’ve started to focus very heavily on my emotional, mental, and spiritual health…If I were able to participate in something like that while I was going through that process, I probably would’ve been stronger.” (Patient 5) “I do think that some element of emotional or mental preparedness or management included in pain management or the overall transplant process would be extremely beneficial to a lot of people. Because there’s so many things that you are not prepared for. There are so many things. The caregivers, as well. There are so many monkey wrenches to be thrown into the plan. And it leaves you kind of feeling like … will this ever end … should I have done this? Was I better off just having sickle cell?” (Patient 5) 3. Patient-lefted decision making in pain management “It was just too much sometimes…I was scared, honestly. They would say, ‘Okay, you know what, we’re going to raise the dosage level.’ So I would look at them and like, ‘Are you sure?’ I’m a small, petite person, you know.” (Patient 2) “I’ve told them many times I don’t want to be on this medicine and every time I mentioned it, I was shot down completely. Like this medicine is the only option and that’s all we’re going to do. And it’s just like you have to work with us. We’re the patients and stuff. We’re not telling you what to do, but we’re telling you how we feel about certain things and we’re the ones that have to live with it.” (Patient10) “But then when we decided to quit it…some of the doctors did not condone it. They didn’t want me to stop it. So my mom was like, well, we don’t want it if we have to quit it, can we get some help? But, here, you know, we felt like, okay, when it’s time for you to get her the pain medicines you offered, and when it’s time for us to quit it, nobody wants to help us.” (Patient 2) “I had the desire that I want the medication. And I have the ambition to stop taking that thing and not to be like this. And it was like…between those things…I felt so lost.” (Patient 7) “I definitely was overmedicating myself. And because of that I would run out quickly and then I would go through withdrawals because I would run out quickly. But the formula of doubling up on the medications because you can, and then you end up running out faster, you don’t think about the fact that, what are you going to do when you have to go back to the doctor and tell them that you don’t have anymore? (Patient 5) 4. Consequences of health-related stigma “I learned to channel that frustration into other means of letting medical professionals know that I’m not a drug addict. And like by that, I would wear my college sweater to the emergency room. Like when I’m in pain, before I’m leaving, or before I’m getting in an ambulance, I’m finding clothing and items that will let people know that I’m a real person.” (Patient 5) “I remember going to the hospital, I got really depressed because they [doctors] thought I was coming to the hospital to try to get out of school. So, I told them I’m in a lot of pain and I feel like something bad is going to happen. And I said you don’t even have to give me pain medicine, I just really need to stay because I know my body better than everyone, and they just wouldn’t believe me.” (Patient10) “But when we went there [rehab facility], before my mom left, the doctors explained to my mom that I would have to be there for three weeks and no visitations. I wouldn’t have to see anybody. I felt like, well, here I am, and I’m about to be considered as if I’m a drug addict or I’m a druggy. So I didn’t like feeling that way or having people think I was just abusing these narcotics when I didn’t. I had been just taking it for so long and here I am quitting it.” (Patient 2) “When I came home and wanted to go to meetings and read books or listen to certain music, there was always a negative mention of, I don’t want to deal with that rehab stuff or I don’t want to listen to that. So I had no support. Coming home, trying to stay sober, and just reeling through that experience… his [referring to husband’s] family has turned against me and was judging me … and all this stuff.” (Patient 5) Open in new tab 1. The Pain Trajectory Patients described fluctuating levels of pain throughout the HSCT process that sometimes extended for years afterwards and impacted all aspects of their life. This description was particularly affected by their experiences with sickle cell pain prior to the HSCT (see Table 3—Theme 1). Patients generally described initial experiences with HSCT-related pain as starting during or immediately after induction chemotherapy. The quality of this pain varied, with some comparing it to a severe sickle cell crisis (“really no different than the pain I had already experienced”; Patient 3) and others feeling they had encountered a new type of severe pain (“whole body pains different from sickle cell”; Patient 2). Regardless, patients’ experiences with pain prior to the HSCT affected their experience afterward. For those who self-reported severe and frequent painful crises prior to the HSCT, pain tended to be described as manageable, even if severe. For those with fewer painful crises, the pain related to HSCT was more intense, described at times as “like death,” “traumatic,” and “horrible.” The pain tended to shift over time to a less severe and more chronic form, which patients attributed to the sequelae of their SCD, of the HSCT, or as a result of normal aging. Pain often resolved entirely, although the timeframe for this improvement ranged anywhere from a few months to 2 years. Of note, the two patients who did not successfully engraft also reported improvements in pain duration and frequency of sickle cell crises after the HSCT compared to before HSCT. Patients measured improvements in pain by not only the need for pain medication or the frequency of pain episodes but also by how pain impacted their quality of life (e.g., school and employment, personal relationships, daily physical activities, and health-related behaviors). For example, prior to the HSCT, patients reported issues such as missing multiple days of school or work because of the frequent painful crises and hospitalizations, making it difficult to maintain a full-time job or stay in school. After the HSCT, pain improvement enabled patients to become more productive, re-enrolling in school and finding full-time work. Patients further described how improvements in pain also improved their physical, mental, emotional, and spiritual health as they pursued exercise, healthy eating, mindfulness, and other healthy habits. 2. The Role of Opioids—A Double-Edged Sword While patients recognized the importance of opioids during and after the HSCT for relieving pain, they also recognized that the frequent and long-term use of opioids created major risks and burdens (“It was very effective. Don’t get me wrong, but it was creating other problems.” Patient 2) (see Table 3—Theme 2). Concerns about the benefit-to-risk ratio of opioid use continued after HSCT. As pain improved, patients generally attempted to stop or wean off opioids, often facing new adverse effects either from withdrawal or from side effects of medications started to manage withdrawal symptoms (e.g., clonidine). This was complicated by the myriad ways that patients attempted to stop opioids. For instance, some utilized detox and/or structured outpatient programs, while others worked with the HSCT or pain management teams to wean. Still others weaned themselves while relying on family or social support for help. Patients’ choice of how to stop opioid use was dependent on resources available and the support provided by the healthcare team. Patients who had positive experiences in weaning reported that the integration of care between different specialty healthcare providers was key to a successful and positive weaning experience. Regardless of method of weaning, patients searched for pain management options that offered a stronger benefit-to-risk ratio and used nonopioid alternatives for pain relief (e.g., medical cannabis, mental health support, acupuncture, massage, exercise, and/or meditation). Patients generally turned to these methods after HSCT, either during or after the opioid weaning process to help cope with their pain. Some patients sought help outside of the healthcare system but stated a preference that more support be provided by their health care team. In particular, participants reported that mental health support and alternative treatments were either not provided or were insufficient. 3. Patient-Centered Decision Making in Pain Management Patients highlighted the importance of their role in decision making about opioid use with their healthcare team. Patients described a lack of sufficient agency in decision making about opioid use, specifically pertaining to opioid medications, doses, and preferences for weaning off of opioids (“We’re not telling you what to do, but we’re telling you how we feel about certain things and we’re the ones that have to live with it”; Patient10) (see Table 3—Theme 3). During the HSCT, opioid doses were generally increased for patients, but this was associated with added risks of adverse effects. Patients expressed their fears, worries, and disagreements with dose escalation or certain opioids but did not feel their concerns were sufficiently incorporated into making decisions about their pain management. As patients progressed after the HSCT, two main experiences with decision making about opioid use emerged. First, patients tended to pivot from advocating against dose increases to actively advocating for dose decreases. Patients tended to report resistance from the healthcare team in making these adjustments and physicians’ lack of sufficient skills to effectively discontinue opioids. Second, patients perceived lack of sufficient agency for issues with opioid use disorder, when present, and its management. The opioid use disorder itself could contribute to lack of agency, as participants reported decreased ability to rationally manage opioid use or establish trust with their healthcare team. 4. Consequences of Health-Related Stigma Related primarily to opioid use and the weaning process, patients described their feelings and experiences with health-related stigma after the HSCT as a continuation of those experiences prior to the HSCT. Even though patients had a positive pain trajectory and many had successfully weaned off of opioids, stigma continued to be an obstacle. Patients described several consequences of health-related stigma including miscommunication with their healthcare teams and family members and personal feelings of guilt and shame (see Table 3—Theme 4). Prior to the HSCT, patients primarily described stigma associated with their opioid use and frequent emergency department visits. This typically took the form of lack of knowledge from the healthcare team, requiring the patients to hide or mask some part of themselves. Some patients used a physical mask to challenge stereotypes by looking “smart” while some masks were more internal, interfering with their confidence in their providers to manage their care and therefore reducing their engagement with healthcare teams. At times, this lack of knowledge impacted their family relationships as well. Patients also had feelings of guilt and shame, which contributed to stress, anxiety, or depressive symptoms. After the HSCT, patients tended to feel that stigma related to their opioid use continued, including a lack of understanding of the weaning process from healthcare teams and family members. For example, participants were reluctant to enroll in detox programs as they were concerned about the associated stigma and the rules and structure around it due to opioid use disorder (e.g., no television, visitors, etc.). Patients also tended to feel judged by being in a closed rehabilitation facility and equated with drug addicts. Discussion Our findings add substantial knowledge to our understanding of pain and pain management experiences after HSCT in adults with SCD. In this qualitative study, four key themes highlighted patients’ experiences with pain and pain management both during and after HSCT for SCD [1]: The pain trajectory [2]; the role of opioids—a double-edged sword [3]; patient-centered decision making in pain management; and [4] consequences of health-related stigma. Patients conceptualized their pain as a trajectory starting from the period prior to the HSCT to at least 1 year after the HSCT. Accompanying the pain trajectory, patients emphasized the role of opioids as a double-edged sword with risks outweighing the benefits. Consequently, patients often elected to stop opioids after the HSCT and resorted to nonpharmacological measures for pain management. Patients also expressed the importance of their role as decision makers, which stemmed from their experiences with opioid dosing and risk of opioid use disorder. Health-related stigma remained an obstacle for patients even after the HSCT, which influenced their overall experiences with pain and pain management. Our qualitative study of patients’ experiences complements quantitative studies of the pain trajectory of patients with SCD after the HSCT. Quantitative studies have shown improvements in pain scores and decreased use of opioids. In one study conducted at our institution, 11 of 17 patients experienced long-term engraftment, and the frequency and intensity of painful crises decreased after 3 to 6 months [7]. Opioids were successfully tapered in 10 of these 11 patients and stopped completely in 7 patients. Another study evaluating a SCD HSCT program reported on a small subset of 11 patients that were taking opioids long-term prior to HSCT [6]; the average weekly opioid use decreased from 639 mg of parenteral morphine equivalents to 140 mg at 6 months, with approximately half successfully weaned off opioids following transplant. Another follow-up analysis of 35 patients found a reduction in pain-related admissions and opioid use post-HSCT compared to pre-HSCT [10]. However, 40% continued to require opioids at 12 months post-HSCT, and in a subgroup of patients with chronic pain unrelated to SCD, 90% continued to use opioids at 1 year. The findings of this study are consistent with broader perceptions of stigma experienced throughout sickle cell treatment, concerns about the efficacy of chronic opioid use, and the need for interdisciplinary models of care that address psychological and social issues [19]. The experiences of this patient population also reinforce the biopsychosocial approach endorsed by those with cancer pain. A systematic review of qualitative studies in cancer pain found that patients strongly endorsed the biopsychosocial perspective, including the need for comprehensive assessment that treats them as a person; consideration of the meaning of pain and its role in daily life; and overlap with emotion and spiritual distress. Patients wanted more nonpharmacologic strategies (but these were rarely offered), empowerment for self-management, including self-help behavioral strategies, and better education and communication around cancer pain [20]. Systematic reviews of numerous randomized, controlled trials support the effectiveness of education and psychosocial interventions for cancer pain equivalent to or greater than most pharmaceutical pain studies [21, 22]. Growing evidence also supports the burdens of opioid use and efficacy of methods for limiting and tapering off opioid use in many pain patients, with similar or improved outcomes [23, 24]. The findings also support the inclusion of long-term patient-reported outcome assessment following curative therapies for sickle cell as recently recommended by a partnership between the American Society of Hematology and Food and Drug Administration, including multidimensional measures of pain, psychosocial performance, societal integration, and health-related quality of life, as well as opioid use [25]. Our study has both strengths and limitations. One of the main strengths is the use of individual semistructured interviews to obtain rich contextual data, which is suitable for the purpose of this study. We used several strategies to ensure rigor in our coding and data analyses including using multiple coders and iterative analysis [15, 18]. Our study also has some limitations. Our sample was a convenience sample due to the limited pool of patients with SCD who undergo HSCT. The process of recruiting patients for this study was difficult and long since most patients did not reside in the area after undergoing the HSCT. Thus, using a purposive sample was not feasible. This also limited our ability to compare themes across demographics. Patients were recruited from a single academic medical center; thus, patient experiences may have been different in other centers that offer HSCT for SCD. Patients referred for the HSCT program were generally well educated and high functioning, which may have skewed our results. We interviewed patients a year or later (sometimes many years) after the HSCT process; thus, recall bias may also have affected our findings. Insights derived from rich experiences of this population emphasize the need for informing and educating the HSCT healthcare team about how patients feel about their pain, discussing with patients their preferences for pain treatment and stopping opioids, engaging patients in making decisions about their course of treatment, and developing ways to reduce the impact of health-related stigma on patients’ well-being. These findings should inform quantitative research to explore these issues in larger samples and research that focuses on developing more effective methods of patient-centered pain management. Acknowledgments We would like to thank the patients who gave us their time and shared their stories with us. References 1 Hassell KL. Population estimates of sickle cell disease in the U.S . Am J Prev Med 2010 ; 38 ( 4 ): S512 – S521 . Google Scholar Crossref Search ADS PubMed WorldCat 2 Complications and Treatments | Sickle Cell Disease | NCBDDD | CDC. 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Optimal patient education for cancer pain: a systematic review and theory-based meta-analysis . Support Care Cancer 2013 ; 21 ( 12 ): 3529 – 37 . Google Scholar Crossref Search ADS PubMed WorldCat 23 Berna C , Kulich RJ , Rathmell JP. Tapering long-term opioid therapy in chronic noncancer pain . Mayo Clin Proc 2015 ; 90 ( 6 ): 828 – 42 . Google Scholar Crossref Search ADS PubMed WorldCat 24 Corli O , Santucci C , Corsi N , Radrezza S , Galli F , Bosetti C. The burden of opioid adverse events and the influence on cancer patients’ symptomatology . J Pain Symptom Manage 2019 ; 57 ( 5 ): 899 – 908.e6 . Google Scholar Crossref Search ADS PubMed WorldCat 25 Farrell AT , Panepinto J , Desai AA , et al. End points for sickle cell disease clinical trials: Renal and cardiopulmonary, cure, and low-resource settings . Blood Adv 2019 ; 3 ( 23 ): 4002 – 20 . Google Scholar Crossref Search ADS PubMed WorldCat Disclosure and conflicts of interest: There are no conflicts of interest to report. Author notes Nebras Abu Al Hamayel and Julie M. Waldfogel contributed equally to this study. © The Author(s) 2021. Published by Oxford University Press on behalf of the American Academy of Pain Medicine. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com This article is published and distributed under the terms of the Oxford University Press, Standard Journals Publication Model (https://academic.oup.com/journals/pages/open_access/funder_policies/chorus/standard_publication_model)
TI - Pain Experiences of Adults With Sickle Cell Disease and Hematopoietic Stem Cell Transplantation: A Qualitative Study
JF - Pain Medicine
DO - 10.1093/pm/pnaa464
DA - 2021-03-01
UR - https://www.deepdyve.com/lp/oxford-university-press/pain-experiences-of-adults-with-sickle-cell-disease-and-hematopoietic-0qcBcPbWYq
SP - 1
EP - 1
VL - Advance Article
IS - 
DP - DeepDyve
ER -