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Challenges for co-morbid chronic illness care and policy in Australia: a qualitative study

Challenges for co-morbid chronic illness care and policy in Australia: a qualitative study Background: In response to the escalating burden of chronic illness in Australia, recent health policies have emphasised the promotion of patient self-management and better preventive care. A notable omission from these policies is the acknowledgment that patients with chronic illness tend to have co-morbid conditions. Our objectives were: to identify the common challenges co- morbidity poses to patients and carers in their experiences of self-management; to detail the views and perceptions of health professionals about these challenges; and to discuss policy options to improve health care for people with co-morbid chronic illness. The method included semi- structured interviews and focus groups with 129 purposively sampled participants. Participants were people with Type 2 diabetes, chronic obstructive pulmonary disease and/or chronic heart failure as well as carers and health care professionals. Content analysis of the interview data was conducted using NVivo7 software. Results: Patients and their carers found co-morbidity influenced their capacity to manage chronic illness in three ways. First, co-morbidity created barriers to patients acting on risk factors; second, it complicated the process of recognising the early symptoms of deterioration of each condition, and third, it complicated their capacity to manage medication. Conclusion: Findings highlight challenges that patients with multiple chronic conditions face in relation to preventive care and self-management. Future clinical policy initiatives need to move away from single illness orientation toward strategies that meet the needs of people with co- morbid conditions and strengthen their capacity to self-manage. These patients will benefit directly from specialised education and services that cater to the needs of people with clusters of co- morbidities. Page 1 of 8 (page number not for citation purposes) Australia and New Zealand Health Policy 2009, 6:22 http://www.anzhealthpolicy.com/content/6/1/22 professionals. Data collection and analysis were carried Background In response to the escalating burden of chronic illness in out by a group of seven research workers with multidisci- Australia, the Council of Australian Governments insti- plinary backgrounds in health and social sciences, all of gated the Better Health for All Initiative [1] in line with the whom trained as a group in workshops and followed a 2005 National Chronic Disease Strategy [2]. Central to data collection manual to ensure consistency in data col- these changes is the promotion of patient self-manage- lection and analysis. ment and better preventive care through increased patient support to act on risk factors [3,4]. State and territory gov- The definition of co-morbidity used in this study was "the ernments have developed policies consistent with this. At coexistence of chronic conditions within the context of an federal, state and territory government levels, policy initi- index condition" [12]. The target population of this study atives are primarily single-illness oriented and this is were people affected by DM, COPD and/or CHF; there- reflected in many aspects of organisation planning and fore, in this paper, 'index condition' refers to those condi- delivery of health services [5]. A notable omission from tions. When patients had two or three index conditions, these policies is the acknowledgment that patients with the conditions were counted as co-morbid and data were chronic illness tend to have co-morbid conditions, the analysed in terms of problems that occurred as a result of prevalence of which increases with age [6-8]. The relation- the patient having two or more conditions. ship between chronic heart failure (CHF) and co-morbid depression is well-established [9,10]. However, a prelimi- Sample nary review of the literature indicates few studies address We used purposive sampling in order to obtain a range of the impact of other co-morbid conditions on chronic dis- patients and carers with varied demographics including ease management. age, ethnicity and severity of the illness. Patients and car- ers were recruited through referrals from general practices, The Serious and Continuing Illnesses Policy and Practice local hospitals, community health services, specialist clin- Study (SCIPPS) is a five-year National Health and Medical ics, health care consumer organisations, as well as Aborig- Research Council-funded research program that focuses inal health services located in the Australian Capital on better policy for improving patient experience in man- Territory (ACT) and western suburbs of Sydney in Aus- aging chronic illness. Three conditions--Type 2 diabetes tralia. Eligible participants included patients aged mellitus (DM), chronic obstructive pulmonary disease between 45 and 85 with one or more of the three condi- (COPD), and chronic heart failure CHF--were studied as tions of interest (DM, COPD and CHF), who at the time they have a high prevalence in Australia, and for each one of interview were living in either the ACT or western Syd- clinical prevention is known to be effective. A qualitative ney and did not have diagnosed cognitive impairment study that forms the basis for this paper was undertaken and family carers. involving 52 patients, 14 carers and 63 health care profes- sionals (HCP). Eighty-seven per cent of patients indicated Health care professionals who had specific experience in they had more than one chronic illness. Without being the management of the index conditions were recruited prompted by the interviewer, 55 of the 66 patients and through Divisions of General Practice and Area Health carers raised co-morbidity as a complicating factor in their Services to include hospital specialists, general practition- experience of chronic illness (and in response to prompt- ers, nurses and allied health professionals. HCPs were ing, a further two patients discussed co-morbidity as a included to provide contextual insight on the health sys- complicating factor). Common patterns emerged from tem. interrogation of the co-morbidity data and these patterns are reported in this paper, which has the following aims: Procedure Study approval was obtained from the relevant institu- • To describe the common challenges co-morbidity tional human research ethics committees and all partici- poses to patients and family carers in their experiences pants provided informed consent prior to their of managing chronic illness participation. Data collection occurred between March 2007 and January 2008. Semi-structured in-depth inter- � To report HCP perspectives on these challenges views were conducted with patients and with carers; each interview running between 45 and 90 minutes. Patients � To discuss the policy challenges these findings pose. and carers then completed a 10-minute demographic sur- vey, which contained information about patient health conditions and health care encounters. One question Methods The study used a generic qualitative approach [11] to included in the survey was, 'Apart from the CHF, COPD explore the experiences and perspectives of patients with and/or DM do you have any other health conditions? If DM, COPD and/or CHF, family carers and health care yes, please list all conditions (chronic and acute) and Page 2 of 8 (page number not for citation purposes) Australia and New Zealand Health Policy 2009, 6:22 http://www.anzhealthpolicy.com/content/6/1/22 describe how long you have had them.' Interviewers clar- examination of qualitative data against relevant partici- ified survey questions as required and provided practical pant survey data. Descriptive analysis (frequencies, assistance in completing the surveys. means, modes and medians) of the survey data was undertaken using SPSS version 15 [16]. In analysis of the All health care professionals participated in one-hour co-morbidity data the first and second authors identified focus groups, with the exception of two HCPs who were problems that participants experienced as a result of hav- interviewed separately. HCPs completed a two-minute ing two or more chronic health conditions. survey about the extent and duration of their work in chronic illness. Although many of the HCPs who recruited Results patients and carers to the study also participated in the Sample characteristics focus groups, the individual patient/carer data were not A total of 52 patients (male n = 28) and 14 carers (male n designed to be linked to HCP data. The research team = 1) were recruited. Of these, 27 patients had DM, 17 judged sufficient data had been gathered when interviews patients had COPD and 20 patients had CHF. The total and focus groups were no longer providing new insights number combines to more than 52 because 10 patients or ideas deemed central to the experience of patients and had two of these conditions and one patient had all three carers, indicating data saturation [13]. conditions. This study succeeded in recruiting patients and carers from diverse cultural and ethnic backgrounds Interview questions (n = 23), including seven Indigenous patients. Most The patient and carer interviews began with a question patients and carers were older than 65 years (n = 42), asking the participant what it was like to live (or care for experienced economic hardship (n = 42), had a decade- someone) with chronic illness. Other questions covered long history of chronic illness (mean = 16.5 years) and (but were not limited to) the most challenging aspects of had monthly or more frequent contact with general prac- their chronic illness, experiences with health services and titioners (GPs). health care providers and support they wanted and/or experienced in managing their chronic illness. Forty-five patients had co-morbid chronic illness. The common co-morbidities included the index conditions of In their responses, many patients and their family carers arthritis, osteoporosis, asthma, and back pain. Depression raised challenges they faced in the management of and pneumonia were two conditions commonly dis- chronic illness that was either caused, or made worse, by cussed by patients; most of whom at the time of the inter- co-morbidity. Based on these findings co-morbidity was view did not have the condition but were mindful that further explored with HCPs. Questions to HCPs concern- they were prone to recurrences. ing co-morbidity included: 'what are the main problems that people with multiple conditions face and what are Of the 63 health care provider (HCP) participants, most the main reasons for the problems?' were female (n = 44) and working full time (n = 55). The majority of HCP participants were registered nurses (n = Analysis 23) and physicians (n = 21, 15 GPs and six specialists). All interviews and focus groups were electronically Other participating HCPs included physiotherapists, care recorded and transcribed verbatim. The data were ana- coordinators, managers, occupational therapists, podia- lysed using qualitative content analysis [13], assisted by a trists, psychologists and social workers. The length of HCP computerised qualitative data analysis program, QSR work experience varied from less than one year to 33 years NVivo7 [14]. A coding scheme was created during the data (median = 8 years). There were 12 HCP participants who collection phase and used to facilitate consistent data listed their role in chronic disease management as "non- analysis by seven researchers across the two research sites. clinical work," meaning they were not involved in direct The coding scheme was refined by the collective research- patient care, yet played a major role in the service provi- ers periodically throughout the data analysis and research- sion for this population. ers regularly engaged in checking each other's Common challenges posed by co-morbidity interpretation accuracy of the data against the coding scheme. Strategies to ensure rigour were developed and Co-morbidity increased the amount of time participants adopted based on the work of Lincoln and Guba (1985) spent managing their health and increased patients' [15]. This included: extensive research worker training dependency on others. Patients with co-morbid condi- and practice in interview skills and data analysis; a pilot to tions encountered problems with the coordination assure adequacy of data collection and recruitment; devel- between services and with polypharmacy. Patients priori- opment and meticulous implementation of data collec- tised the management of one condition over another; tion and analysis protocols; maintenance of inter-coder consequently, some health issues could be neglected or reliability according to established analysis protocol; and compromised. The three most common challenges to Page 3 of 8 (page number not for citation purposes) Australia and New Zealand Health Policy 2009, 6:22 http://www.anzhealthpolicy.com/content/6/1/22 patients and carers in managing chronic illness (either and CHF). Clinical depression was a common co-morbid caused or made worse by co-morbidity), relate to acting condition that reduced patient motivation to follow a on risk factors, recognising signs and symptoms of illness healthy diet or exercise. For some patients co-morbid con- and managing medications. Table 1 indicates key issues ditions such as arthritis delayed completion of rehabilita- that patients and carers discussed in connection with co- tion programs or caused them to withdraw from the morbidity. program: Capacity to act on risk factors There were people older than me [in the cardiac reha- Risk factors are variables known to increase a person's risk bilitation program] and I couldn't keep up with them of illness or deterioration in health; the term 'risk factor' because of my ankle. That's how I went to the doctor was used by HCPs but not by patients and carers. Com- and I showed them and I got arthritis. That was why I mon risk factors that patients and carers discussed couldn't walk properly. ...I got an exercise bike. I look included physical inactivity, poor diet, stress, smoking at it a lot, that bloody bike. Bit slack. and excessive alcohol consumption. While patients and their carers indicated an awareness that changing their Man in his sixties with DM and CHF lifestyle would prevent further deterioration, co-morbid- ity frequently prevented them from acting on risk factors Similarly, HCPs reported that co-morbid conditions, in effectively--raising feelings of guilt, frustration, depression particular arthritis and depression, could limit usefulness and anxiety. of rehabilitation programs for patients' index chronic con- ditions. Premature withdrawal of patients from rehabilita- Many patients found it difficult to maintain a healthy diet tion programs due to co-morbid conditions was costly, as (a topic raised especially by patients who had both DM was extended participation in programs, which was per- Table 1: Patient and carer perspectives on challenges associated with co-morbidity Challenges associated with co-morbidity Co-morbidity (n = 57) Acting on risk factors 13 Recognising change in illness condition 31 Being on guard/alert to changes 11 Illness management mechanism (inc. medication) 35 Uncertainty 13 Learning 18 Planning (inc. medication & diet) 12 Adverse effects of medication 05 Remaining positive 13 Managing abnormal blood sugar levels 13 Complications in illness (caused by index condition) 13 Living with anxiety and fear 26 Obtaining quality care 21 Balancing life and illness 19 Physical or social activities 17 Page 4 of 8 (page number not for citation purposes) Australia and New Zealand Health Policy 2009, 6:22 http://www.anzhealthpolicy.com/content/6/1/22 ceived as creating further resource constraints in a system Wife carer in her seventies of a man with DM already under considerable strain: Patients said they wanted more information that So we can either treat the ones that we do very well and addresses the links between co-morbid conditions to facil- neglect all the ones who are trying to get in who also itate their self-management. need it, or we ditch them before they've done their best work to try and get more in. You can't win either Health care professionals reiterated the difficulty for way. So that's again a lack of resources and availability. patients in recognising signs and symptoms of co-morbid conditions, noting that this is a particular problem for HCP in the ACT patients with limited health knowledge. HCPs further explained that even when patients did correctly identify This perception of resource restraints explained why HCPs new symptoms they did not always know how to respond deterred people with multiple conditions from staying in and so ended up in hospital or suffered unnecessarily at rehabilitation programs. home. Capacity to recognise the signs and symptoms of illness Capacity to manage medications Co-morbidity made it difficult for patients to recognise Four out of five patients had co-morbid conditions. A signs and symptoms of the index condition, especially total of 38 patients received treatment with medication early warnings of an exacerbation. This concern was raised for at least one of their conditions and 20 patients were more frequently by patients with CHF than by patients prescribed seven or more medications, each with their with DM or COPD. A woman in her seventies with DM, own daily regimen. Patients found managing medication asthma and CHF said: "It is very hard for me to say for their numerous conditions to be complicated, time- whether it is my heart that I am short of breath with or consuming, inconvenient and confusing. They raised con- asthma." Learning about the features of both their index cerns of insufficient knowledge about drug interactions condition and co-morbid conditions took much longer and side-effects, and not being able to manage their med- than simply learning about the features of a single condi- ications. Others did not follow medication recommenda- tion. A carer explained that with her mother's recent diag- tions because they did not like taking pills. For example, a nosis of DM they remained unsure whether her mother's woman with DM and CHF did not take her prescribed mini-strokes were symptoms of DM or indicating a sepa- medication for DM management because she did not rate condition: want to increase the number of pills she was already tak- ing (for management of CHF): "I'm on so many heart tab- We don't know actually [what caused the mini- lets and things like that, I didn't want to take any [more] strokes]. Well, she did have a couple of episodes, I medication, so I went for diet, and diet control." This is don't know if they would have been the mini-strokes, also an example of the patient prioritising treatment of if they would have been diabetes or what it would one condition over another. have been. But of course ...she was only diagnosed recently [with DM]. Many patients demonstrated limited knowledge and understanding of their medications and were unable to Daughter carer in her fifties of a woman with DM differentiate between them. A carer in her fifties of a woman with DM said: "I have to do the medicines these Patients indicated they learnt how to recognise signs and days. ...I kept noticing she didn't know what to call the symptoms of exacerbation by applying information tablets and stuff and now she's got over 20 tablets [daily]." gained through various sources (written sources, conver- Similarly, a farmer with DM and COPD said: "Well I'm sations with health professionals, friends and family) to not too sure what they're for but I know they're either for their personal experience in a process of trial and error. A diabetes or for me heart, or cholesterol, or high blood wife carer of a man with DM and Alzheimer's disease pressure." While blister packs preloaded with medication learnt over time to differentiate between the signs and were often perceived as helpful in managing medications, symptoms associated with each illness: some people with the packs found they no longer knew what medication they were taking and could not distin- Sometimes he'd get a little bit tired and in a second guish between medications. Cognitive impairment or he'd fell and hit his head. He would slur his words and dementia further impaired their ability to manage, and in things like that but I knew he had the symptoms of no many cases their carers had taken over that task. sugar. ...Over time, you just realise that this is what's going on. Patients discussed the complex process of finding suitable medications to manage their conditions, noting that often Page 5 of 8 (page number not for citation purposes) Australia and New Zealand Health Policy 2009, 6:22 http://www.anzhealthpolicy.com/content/6/1/22 this required good communication with health care pro- of co-morbidity among HCPs and their increased commu- fessionals, which in turn was dependent on patient aware- nication between specialities [22]. Existing initiatives such ness of signs and symptoms associated with their as the Enhanced Primary Care Multidisciplinary Case numerous conditions. HCPs raised other critical elements Conferencing and Care Plans, or The Australian Govern- influencing medication compliance such as patient hon- ment's Health Connect program facilitate communication esty or recall/forgetfulness about which medications they between specialities and increasing their uptake will ben- were actually taking. HCPs indicated financial constraints efit patients with co-morbid illness [23-26]. and the cost of filling scripts often caused patients with co- morbid conditions to skip medications they thought were Second, co-morbidity made it difficult for patients to less important than others. One HCP said: identify signs and symptoms of an exacerbation of an index condition. Kerr, Heisler, and Krein et al. (2007) They tend to pick and choose which... scripts they get found complications occurred when patients prioritised filled, because they've got so many things going on at the self-management of one condition over another [18]. once... And the whole issue of medication manage- However, our findings suggest it is the complexity of the ment arises and it escalates their co-morbidity. knowledge required and the confusing nature of the symptoms that prevent patients from recognising physical HCP in the ACT and psychological changes. The ability to recognise signs and symptoms of each illness is an important aspect of Several health care professionals indicated that medica- self-care and care planning [27,28] and patients may ben- tion management and non-compliance were particular efit from policy that promotes patient health knowledge problems with patients with mental illness. They sug- through self-management planning. Much written patient gested that better access to mental health care providers information provided in primary care settings is disease- could improve medication management for these specific. Many non-government organisations are orien- patients. HCPs also suggested that lack of awareness by tated towards single diseases or organs (e.g. Diabetes Aus- HCPs and patients concerning risks involved in using tralia or the National Heart Foundation). Recent policies multiple medication brand names could lead to patients such as the 2005 National Chronic Disease Strategy focus unknowingly taking doses higher than prescribed, result- on common single conditions rather than co-morbid ing in ill health, and that this could go unnoticed. issues. All these observations reflect the dominant disease Patients, carers and HCPs suggested that the capacity to silo orientation of current Australian policy and practice manage medication could be improved through increased [26,27]. education, patient engagement and good communication between patients and their HCPs. The third limitation was that co-morbidity interfered with patient capacity to manage their medications and adhere Discussion to medication regimens. This was made worse by polyp- Patients and their carers found co-morbidity limited their harmacy, poor medication literacy or confusion about capacity to manage chronic illness by diminishing patient regimens, and financial pressure [29-32]. Patients may ability to reduce risks, recognise symptoms of exacerba- benefit from medication education and services that tion and to manage medication. We discuss these three address these complications [31,33]. In Australia this has issues in turn and suggest specific policy and practice been addressed through a pharmacist in-home patient implications of the findings. First, co-morbidity dimin- medication review as part of a GP care plan called the ished patients' ability to act on risk factors, which has Domiciliary Medication Management Review (DMMR). been noted in other literature [9,17-19]. Future manage- This review has had slow uptake across Australia because ment strategies and guidelines should be informed by dia- of pharmacist workforce shortages, pharmacists needing logue between patients and professionals as well as to be accredited before they can access the item, insuffi- lessons learnt in studies addressing specific co-morbidi- cient financial incentives, insufficient collaboration ties clusters [19-22]. One solution to the challenge of between pharmacists and GPs and insufficient promotion maintaining an exercise regimen would be for cardiac and of the item [34]. These factors need to be addressed to pulmonary rehabilitation programs to undergo re-design, support the needs of patients who have co-morbid condi- catering to the needs of COPD and CHF participants with tions [34,35]. None of the participants in our study men- common co-morbid conditions such as arthritis. Policy tioned the DMMR, which might reflect the initiative's interventions that offer incentives to rehabilitation pro- shortfalls. grams could effectively initiate the required changes to increase the programs' capacity to meet more common These three difficulties in self-management, which stem combinations of co-morbid conditions. The success of from co-morbidity, have been recognised in other studies this solution will depend on the increased understanding as well. The Kaiser Model of Stratified Care according to Page 6 of 8 (page number not for citation purposes) Australia and New Zealand Health Policy 2009, 6:22 http://www.anzhealthpolicy.com/content/6/1/22 Patient Need [36] and the Wagner Model of Chronic Care uscript and revising it critically for important intellectual concerning self-management and patient decision-mak- content. All authors read and approved the final manu- ing support [37], are two widely used models of care that script. support the promotion of patient education and collabo- ration between patients and HCPs for effective self-man- Acknowledgements The Serious and Continuing Illnesses Policy and Practice Study (SCIPPS) is agement. There is room within these models to address an NHMRC-funded program conducted at The Australian National Univer- the needs of people with multiple conditions. Research is sity and the University of Sydney and administered by the Menzies Centre now needed to address specific combinations of illnesses for Health Policy. that are known to be co-morbid and highly prevalent. This kind of research may suggest modifications to the existing References chronic care models and will inform policy initiatives at 1. Australian Government, Department of Health and Ageing: Better national and state levels that aim to improve patients' health for all Australians. 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J Qual Improv 2001, 27:63-80. Publish with Bio Med Central and every scientist can read your work free of charge "BioMed Central will be the most significant development for disseminating the results of biomedical researc h in our lifetime." Sir Paul Nurse, Cancer Research UK Your research papers will be: available free of charge to the entire biomedical community peer reviewed and published immediately upon acceptance cited in PubMed and archived on PubMed Central yours — you keep the copyright BioMedcentral Submit your manuscript here: http://www.biomedcentral.com/info/publishing_adv.asp Page 8 of 8 (page number not for citation purposes) http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Australia and New Zealand Health Policy Springer Journals

Challenges for co-morbid chronic illness care and policy in Australia: a qualitative study

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Springer Journals
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Copyright © 2009 by Jowsey et al; licensee BioMed Central Ltd.
Subject
Medicine & Public Health; Public Health; Social Policy
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1743-8462
DOI
10.1186/1743-8462-6-22
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19735576
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Abstract

Background: In response to the escalating burden of chronic illness in Australia, recent health policies have emphasised the promotion of patient self-management and better preventive care. A notable omission from these policies is the acknowledgment that patients with chronic illness tend to have co-morbid conditions. Our objectives were: to identify the common challenges co- morbidity poses to patients and carers in their experiences of self-management; to detail the views and perceptions of health professionals about these challenges; and to discuss policy options to improve health care for people with co-morbid chronic illness. The method included semi- structured interviews and focus groups with 129 purposively sampled participants. Participants were people with Type 2 diabetes, chronic obstructive pulmonary disease and/or chronic heart failure as well as carers and health care professionals. Content analysis of the interview data was conducted using NVivo7 software. Results: Patients and their carers found co-morbidity influenced their capacity to manage chronic illness in three ways. First, co-morbidity created barriers to patients acting on risk factors; second, it complicated the process of recognising the early symptoms of deterioration of each condition, and third, it complicated their capacity to manage medication. Conclusion: Findings highlight challenges that patients with multiple chronic conditions face in relation to preventive care and self-management. Future clinical policy initiatives need to move away from single illness orientation toward strategies that meet the needs of people with co- morbid conditions and strengthen their capacity to self-manage. These patients will benefit directly from specialised education and services that cater to the needs of people with clusters of co- morbidities. Page 1 of 8 (page number not for citation purposes) Australia and New Zealand Health Policy 2009, 6:22 http://www.anzhealthpolicy.com/content/6/1/22 professionals. Data collection and analysis were carried Background In response to the escalating burden of chronic illness in out by a group of seven research workers with multidisci- Australia, the Council of Australian Governments insti- plinary backgrounds in health and social sciences, all of gated the Better Health for All Initiative [1] in line with the whom trained as a group in workshops and followed a 2005 National Chronic Disease Strategy [2]. Central to data collection manual to ensure consistency in data col- these changes is the promotion of patient self-manage- lection and analysis. ment and better preventive care through increased patient support to act on risk factors [3,4]. State and territory gov- The definition of co-morbidity used in this study was "the ernments have developed policies consistent with this. At coexistence of chronic conditions within the context of an federal, state and territory government levels, policy initi- index condition" [12]. The target population of this study atives are primarily single-illness oriented and this is were people affected by DM, COPD and/or CHF; there- reflected in many aspects of organisation planning and fore, in this paper, 'index condition' refers to those condi- delivery of health services [5]. A notable omission from tions. When patients had two or three index conditions, these policies is the acknowledgment that patients with the conditions were counted as co-morbid and data were chronic illness tend to have co-morbid conditions, the analysed in terms of problems that occurred as a result of prevalence of which increases with age [6-8]. The relation- the patient having two or more conditions. ship between chronic heart failure (CHF) and co-morbid depression is well-established [9,10]. However, a prelimi- Sample nary review of the literature indicates few studies address We used purposive sampling in order to obtain a range of the impact of other co-morbid conditions on chronic dis- patients and carers with varied demographics including ease management. age, ethnicity and severity of the illness. Patients and car- ers were recruited through referrals from general practices, The Serious and Continuing Illnesses Policy and Practice local hospitals, community health services, specialist clin- Study (SCIPPS) is a five-year National Health and Medical ics, health care consumer organisations, as well as Aborig- Research Council-funded research program that focuses inal health services located in the Australian Capital on better policy for improving patient experience in man- Territory (ACT) and western suburbs of Sydney in Aus- aging chronic illness. Three conditions--Type 2 diabetes tralia. Eligible participants included patients aged mellitus (DM), chronic obstructive pulmonary disease between 45 and 85 with one or more of the three condi- (COPD), and chronic heart failure CHF--were studied as tions of interest (DM, COPD and CHF), who at the time they have a high prevalence in Australia, and for each one of interview were living in either the ACT or western Syd- clinical prevention is known to be effective. A qualitative ney and did not have diagnosed cognitive impairment study that forms the basis for this paper was undertaken and family carers. involving 52 patients, 14 carers and 63 health care profes- sionals (HCP). Eighty-seven per cent of patients indicated Health care professionals who had specific experience in they had more than one chronic illness. Without being the management of the index conditions were recruited prompted by the interviewer, 55 of the 66 patients and through Divisions of General Practice and Area Health carers raised co-morbidity as a complicating factor in their Services to include hospital specialists, general practition- experience of chronic illness (and in response to prompt- ers, nurses and allied health professionals. HCPs were ing, a further two patients discussed co-morbidity as a included to provide contextual insight on the health sys- complicating factor). Common patterns emerged from tem. interrogation of the co-morbidity data and these patterns are reported in this paper, which has the following aims: Procedure Study approval was obtained from the relevant institu- • To describe the common challenges co-morbidity tional human research ethics committees and all partici- poses to patients and family carers in their experiences pants provided informed consent prior to their of managing chronic illness participation. Data collection occurred between March 2007 and January 2008. Semi-structured in-depth inter- � To report HCP perspectives on these challenges views were conducted with patients and with carers; each interview running between 45 and 90 minutes. Patients � To discuss the policy challenges these findings pose. and carers then completed a 10-minute demographic sur- vey, which contained information about patient health conditions and health care encounters. One question Methods The study used a generic qualitative approach [11] to included in the survey was, 'Apart from the CHF, COPD explore the experiences and perspectives of patients with and/or DM do you have any other health conditions? If DM, COPD and/or CHF, family carers and health care yes, please list all conditions (chronic and acute) and Page 2 of 8 (page number not for citation purposes) Australia and New Zealand Health Policy 2009, 6:22 http://www.anzhealthpolicy.com/content/6/1/22 describe how long you have had them.' Interviewers clar- examination of qualitative data against relevant partici- ified survey questions as required and provided practical pant survey data. Descriptive analysis (frequencies, assistance in completing the surveys. means, modes and medians) of the survey data was undertaken using SPSS version 15 [16]. In analysis of the All health care professionals participated in one-hour co-morbidity data the first and second authors identified focus groups, with the exception of two HCPs who were problems that participants experienced as a result of hav- interviewed separately. HCPs completed a two-minute ing two or more chronic health conditions. survey about the extent and duration of their work in chronic illness. Although many of the HCPs who recruited Results patients and carers to the study also participated in the Sample characteristics focus groups, the individual patient/carer data were not A total of 52 patients (male n = 28) and 14 carers (male n designed to be linked to HCP data. The research team = 1) were recruited. Of these, 27 patients had DM, 17 judged sufficient data had been gathered when interviews patients had COPD and 20 patients had CHF. The total and focus groups were no longer providing new insights number combines to more than 52 because 10 patients or ideas deemed central to the experience of patients and had two of these conditions and one patient had all three carers, indicating data saturation [13]. conditions. This study succeeded in recruiting patients and carers from diverse cultural and ethnic backgrounds Interview questions (n = 23), including seven Indigenous patients. Most The patient and carer interviews began with a question patients and carers were older than 65 years (n = 42), asking the participant what it was like to live (or care for experienced economic hardship (n = 42), had a decade- someone) with chronic illness. Other questions covered long history of chronic illness (mean = 16.5 years) and (but were not limited to) the most challenging aspects of had monthly or more frequent contact with general prac- their chronic illness, experiences with health services and titioners (GPs). health care providers and support they wanted and/or experienced in managing their chronic illness. Forty-five patients had co-morbid chronic illness. The common co-morbidities included the index conditions of In their responses, many patients and their family carers arthritis, osteoporosis, asthma, and back pain. Depression raised challenges they faced in the management of and pneumonia were two conditions commonly dis- chronic illness that was either caused, or made worse, by cussed by patients; most of whom at the time of the inter- co-morbidity. Based on these findings co-morbidity was view did not have the condition but were mindful that further explored with HCPs. Questions to HCPs concern- they were prone to recurrences. ing co-morbidity included: 'what are the main problems that people with multiple conditions face and what are Of the 63 health care provider (HCP) participants, most the main reasons for the problems?' were female (n = 44) and working full time (n = 55). The majority of HCP participants were registered nurses (n = Analysis 23) and physicians (n = 21, 15 GPs and six specialists). All interviews and focus groups were electronically Other participating HCPs included physiotherapists, care recorded and transcribed verbatim. The data were ana- coordinators, managers, occupational therapists, podia- lysed using qualitative content analysis [13], assisted by a trists, psychologists and social workers. The length of HCP computerised qualitative data analysis program, QSR work experience varied from less than one year to 33 years NVivo7 [14]. A coding scheme was created during the data (median = 8 years). There were 12 HCP participants who collection phase and used to facilitate consistent data listed their role in chronic disease management as "non- analysis by seven researchers across the two research sites. clinical work," meaning they were not involved in direct The coding scheme was refined by the collective research- patient care, yet played a major role in the service provi- ers periodically throughout the data analysis and research- sion for this population. ers regularly engaged in checking each other's Common challenges posed by co-morbidity interpretation accuracy of the data against the coding scheme. Strategies to ensure rigour were developed and Co-morbidity increased the amount of time participants adopted based on the work of Lincoln and Guba (1985) spent managing their health and increased patients' [15]. This included: extensive research worker training dependency on others. Patients with co-morbid condi- and practice in interview skills and data analysis; a pilot to tions encountered problems with the coordination assure adequacy of data collection and recruitment; devel- between services and with polypharmacy. Patients priori- opment and meticulous implementation of data collec- tised the management of one condition over another; tion and analysis protocols; maintenance of inter-coder consequently, some health issues could be neglected or reliability according to established analysis protocol; and compromised. The three most common challenges to Page 3 of 8 (page number not for citation purposes) Australia and New Zealand Health Policy 2009, 6:22 http://www.anzhealthpolicy.com/content/6/1/22 patients and carers in managing chronic illness (either and CHF). Clinical depression was a common co-morbid caused or made worse by co-morbidity), relate to acting condition that reduced patient motivation to follow a on risk factors, recognising signs and symptoms of illness healthy diet or exercise. For some patients co-morbid con- and managing medications. Table 1 indicates key issues ditions such as arthritis delayed completion of rehabilita- that patients and carers discussed in connection with co- tion programs or caused them to withdraw from the morbidity. program: Capacity to act on risk factors There were people older than me [in the cardiac reha- Risk factors are variables known to increase a person's risk bilitation program] and I couldn't keep up with them of illness or deterioration in health; the term 'risk factor' because of my ankle. That's how I went to the doctor was used by HCPs but not by patients and carers. Com- and I showed them and I got arthritis. That was why I mon risk factors that patients and carers discussed couldn't walk properly. ...I got an exercise bike. I look included physical inactivity, poor diet, stress, smoking at it a lot, that bloody bike. Bit slack. and excessive alcohol consumption. While patients and their carers indicated an awareness that changing their Man in his sixties with DM and CHF lifestyle would prevent further deterioration, co-morbid- ity frequently prevented them from acting on risk factors Similarly, HCPs reported that co-morbid conditions, in effectively--raising feelings of guilt, frustration, depression particular arthritis and depression, could limit usefulness and anxiety. of rehabilitation programs for patients' index chronic con- ditions. Premature withdrawal of patients from rehabilita- Many patients found it difficult to maintain a healthy diet tion programs due to co-morbid conditions was costly, as (a topic raised especially by patients who had both DM was extended participation in programs, which was per- Table 1: Patient and carer perspectives on challenges associated with co-morbidity Challenges associated with co-morbidity Co-morbidity (n = 57) Acting on risk factors 13 Recognising change in illness condition 31 Being on guard/alert to changes 11 Illness management mechanism (inc. medication) 35 Uncertainty 13 Learning 18 Planning (inc. medication & diet) 12 Adverse effects of medication 05 Remaining positive 13 Managing abnormal blood sugar levels 13 Complications in illness (caused by index condition) 13 Living with anxiety and fear 26 Obtaining quality care 21 Balancing life and illness 19 Physical or social activities 17 Page 4 of 8 (page number not for citation purposes) Australia and New Zealand Health Policy 2009, 6:22 http://www.anzhealthpolicy.com/content/6/1/22 ceived as creating further resource constraints in a system Wife carer in her seventies of a man with DM already under considerable strain: Patients said they wanted more information that So we can either treat the ones that we do very well and addresses the links between co-morbid conditions to facil- neglect all the ones who are trying to get in who also itate their self-management. need it, or we ditch them before they've done their best work to try and get more in. You can't win either Health care professionals reiterated the difficulty for way. So that's again a lack of resources and availability. patients in recognising signs and symptoms of co-morbid conditions, noting that this is a particular problem for HCP in the ACT patients with limited health knowledge. HCPs further explained that even when patients did correctly identify This perception of resource restraints explained why HCPs new symptoms they did not always know how to respond deterred people with multiple conditions from staying in and so ended up in hospital or suffered unnecessarily at rehabilitation programs. home. Capacity to recognise the signs and symptoms of illness Capacity to manage medications Co-morbidity made it difficult for patients to recognise Four out of five patients had co-morbid conditions. A signs and symptoms of the index condition, especially total of 38 patients received treatment with medication early warnings of an exacerbation. This concern was raised for at least one of their conditions and 20 patients were more frequently by patients with CHF than by patients prescribed seven or more medications, each with their with DM or COPD. A woman in her seventies with DM, own daily regimen. Patients found managing medication asthma and CHF said: "It is very hard for me to say for their numerous conditions to be complicated, time- whether it is my heart that I am short of breath with or consuming, inconvenient and confusing. They raised con- asthma." Learning about the features of both their index cerns of insufficient knowledge about drug interactions condition and co-morbid conditions took much longer and side-effects, and not being able to manage their med- than simply learning about the features of a single condi- ications. Others did not follow medication recommenda- tion. A carer explained that with her mother's recent diag- tions because they did not like taking pills. For example, a nosis of DM they remained unsure whether her mother's woman with DM and CHF did not take her prescribed mini-strokes were symptoms of DM or indicating a sepa- medication for DM management because she did not rate condition: want to increase the number of pills she was already tak- ing (for management of CHF): "I'm on so many heart tab- We don't know actually [what caused the mini- lets and things like that, I didn't want to take any [more] strokes]. Well, she did have a couple of episodes, I medication, so I went for diet, and diet control." This is don't know if they would have been the mini-strokes, also an example of the patient prioritising treatment of if they would have been diabetes or what it would one condition over another. have been. But of course ...she was only diagnosed recently [with DM]. Many patients demonstrated limited knowledge and understanding of their medications and were unable to Daughter carer in her fifties of a woman with DM differentiate between them. A carer in her fifties of a woman with DM said: "I have to do the medicines these Patients indicated they learnt how to recognise signs and days. ...I kept noticing she didn't know what to call the symptoms of exacerbation by applying information tablets and stuff and now she's got over 20 tablets [daily]." gained through various sources (written sources, conver- Similarly, a farmer with DM and COPD said: "Well I'm sations with health professionals, friends and family) to not too sure what they're for but I know they're either for their personal experience in a process of trial and error. A diabetes or for me heart, or cholesterol, or high blood wife carer of a man with DM and Alzheimer's disease pressure." While blister packs preloaded with medication learnt over time to differentiate between the signs and were often perceived as helpful in managing medications, symptoms associated with each illness: some people with the packs found they no longer knew what medication they were taking and could not distin- Sometimes he'd get a little bit tired and in a second guish between medications. Cognitive impairment or he'd fell and hit his head. He would slur his words and dementia further impaired their ability to manage, and in things like that but I knew he had the symptoms of no many cases their carers had taken over that task. sugar. ...Over time, you just realise that this is what's going on. Patients discussed the complex process of finding suitable medications to manage their conditions, noting that often Page 5 of 8 (page number not for citation purposes) Australia and New Zealand Health Policy 2009, 6:22 http://www.anzhealthpolicy.com/content/6/1/22 this required good communication with health care pro- of co-morbidity among HCPs and their increased commu- fessionals, which in turn was dependent on patient aware- nication between specialities [22]. Existing initiatives such ness of signs and symptoms associated with their as the Enhanced Primary Care Multidisciplinary Case numerous conditions. HCPs raised other critical elements Conferencing and Care Plans, or The Australian Govern- influencing medication compliance such as patient hon- ment's Health Connect program facilitate communication esty or recall/forgetfulness about which medications they between specialities and increasing their uptake will ben- were actually taking. HCPs indicated financial constraints efit patients with co-morbid illness [23-26]. and the cost of filling scripts often caused patients with co- morbid conditions to skip medications they thought were Second, co-morbidity made it difficult for patients to less important than others. One HCP said: identify signs and symptoms of an exacerbation of an index condition. Kerr, Heisler, and Krein et al. (2007) They tend to pick and choose which... scripts they get found complications occurred when patients prioritised filled, because they've got so many things going on at the self-management of one condition over another [18]. once... And the whole issue of medication manage- However, our findings suggest it is the complexity of the ment arises and it escalates their co-morbidity. knowledge required and the confusing nature of the symptoms that prevent patients from recognising physical HCP in the ACT and psychological changes. The ability to recognise signs and symptoms of each illness is an important aspect of Several health care professionals indicated that medica- self-care and care planning [27,28] and patients may ben- tion management and non-compliance were particular efit from policy that promotes patient health knowledge problems with patients with mental illness. They sug- through self-management planning. Much written patient gested that better access to mental health care providers information provided in primary care settings is disease- could improve medication management for these specific. Many non-government organisations are orien- patients. HCPs also suggested that lack of awareness by tated towards single diseases or organs (e.g. Diabetes Aus- HCPs and patients concerning risks involved in using tralia or the National Heart Foundation). Recent policies multiple medication brand names could lead to patients such as the 2005 National Chronic Disease Strategy focus unknowingly taking doses higher than prescribed, result- on common single conditions rather than co-morbid ing in ill health, and that this could go unnoticed. issues. All these observations reflect the dominant disease Patients, carers and HCPs suggested that the capacity to silo orientation of current Australian policy and practice manage medication could be improved through increased [26,27]. education, patient engagement and good communication between patients and their HCPs. The third limitation was that co-morbidity interfered with patient capacity to manage their medications and adhere Discussion to medication regimens. This was made worse by polyp- Patients and their carers found co-morbidity limited their harmacy, poor medication literacy or confusion about capacity to manage chronic illness by diminishing patient regimens, and financial pressure [29-32]. Patients may ability to reduce risks, recognise symptoms of exacerba- benefit from medication education and services that tion and to manage medication. We discuss these three address these complications [31,33]. In Australia this has issues in turn and suggest specific policy and practice been addressed through a pharmacist in-home patient implications of the findings. First, co-morbidity dimin- medication review as part of a GP care plan called the ished patients' ability to act on risk factors, which has Domiciliary Medication Management Review (DMMR). been noted in other literature [9,17-19]. Future manage- This review has had slow uptake across Australia because ment strategies and guidelines should be informed by dia- of pharmacist workforce shortages, pharmacists needing logue between patients and professionals as well as to be accredited before they can access the item, insuffi- lessons learnt in studies addressing specific co-morbidi- cient financial incentives, insufficient collaboration ties clusters [19-22]. One solution to the challenge of between pharmacists and GPs and insufficient promotion maintaining an exercise regimen would be for cardiac and of the item [34]. These factors need to be addressed to pulmonary rehabilitation programs to undergo re-design, support the needs of patients who have co-morbid condi- catering to the needs of COPD and CHF participants with tions [34,35]. None of the participants in our study men- common co-morbid conditions such as arthritis. Policy tioned the DMMR, which might reflect the initiative's interventions that offer incentives to rehabilitation pro- shortfalls. grams could effectively initiate the required changes to increase the programs' capacity to meet more common These three difficulties in self-management, which stem combinations of co-morbid conditions. The success of from co-morbidity, have been recognised in other studies this solution will depend on the increased understanding as well. The Kaiser Model of Stratified Care according to Page 6 of 8 (page number not for citation purposes) Australia and New Zealand Health Policy 2009, 6:22 http://www.anzhealthpolicy.com/content/6/1/22 Patient Need [36] and the Wagner Model of Chronic Care uscript and revising it critically for important intellectual concerning self-management and patient decision-mak- content. All authors read and approved the final manu- ing support [37], are two widely used models of care that script. support the promotion of patient education and collabo- ration between patients and HCPs for effective self-man- Acknowledgements The Serious and Continuing Illnesses Policy and Practice Study (SCIPPS) is agement. There is room within these models to address an NHMRC-funded program conducted at The Australian National Univer- the needs of people with multiple conditions. Research is sity and the University of Sydney and administered by the Menzies Centre now needed to address specific combinations of illnesses for Health Policy. that are known to be co-morbid and highly prevalent. This kind of research may suggest modifications to the existing References chronic care models and will inform policy initiatives at 1. Australian Government, Department of Health and Ageing: Better national and state levels that aim to improve patients' health for all Australians. 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J Qual Improv 2001, 27:63-80. Publish with Bio Med Central and every scientist can read your work free of charge "BioMed Central will be the most significant development for disseminating the results of biomedical researc h in our lifetime." Sir Paul Nurse, Cancer Research UK Your research papers will be: available free of charge to the entire biomedical community peer reviewed and published immediately upon acceptance cited in PubMed and archived on PubMed Central yours — you keep the copyright BioMedcentral Submit your manuscript here: http://www.biomedcentral.com/info/publishing_adv.asp Page 8 of 8 (page number not for citation purposes)

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Australia and New Zealand Health PolicySpringer Journals

Published: Sep 8, 2009

References