Chronic Disease Management - The Patient's Perspective
K Browne, D Divilly, M McGarry, C Sweeney, ME Kelly
Western Training Programme in General Practice, Galway University Hospital, Newcastle Rd, Galway
A paucity of data exists on Irish patients' perspective of chronic disease management. This study explores patients' views on what is the most appropriate setting for their chronic disease management, the advantages and disadvantages of these settings, and where they get information on their condition. Semi-structured qualitative interviews were carried out with 24 patients. Three main themes emerged: Current Care Model, Health Literacy and Treatment Burden. Patients believe that the GP-patient relationship plays a pivotal role in the provision of chronic disease management. Health literacy and psychosocial burden were found to impact significantly on the lives of patients with chronic disease(s).
Worldwide, chronic diseases have overtaken infectious diseases as the leading cause of death and disability1. In 2011, research on perceptions of GPs in Ireland on chronic disease management showed that GPs support the concept of shared care with local hospitals. "Eliciting patients' perspectives on chronic disease management" was highlighted as an important next step as this information was lacking2. Globally, medicine is moving towards informing, educating and empowering patients to take part in their care3. As part of encouraging this in Ireland, we wished to explore patients' perspectives of their chronic disease management. The study aim was establishing the current setting of their health care provision, their preferred setting, reasons why and their source of health education regarding their chronic illness.
The study design was qualitative drawing on broad precepts and principles of grounded theory analysis4,5. According to best practice guidelines researchers should clearly outline the aspects of grounded theory employed6. Specifically this study employs purposeful sampling, an iterative approach to data generation and analysis and the constant comparison technique4,5. The study was conducted across four General Practices in the West of Ireland between November and December 2013. Typical case sampling selected 64 participants across the 4 practices. This is a type of purposeful sampling that allows researchers to decide important characteristics of the 'typical case' and select the sample to fit the characteristics of the typical case7,8. This was to ensure a variety of patients with a spectrum of diseases and care models were represented and was guided by the study sampling framework. The variables in the sampling framework were patient gender and patient status (i.e. General Medical Scheme or Fee paying private patient), as the literature review suggested these were factors impacting on patients’ experience of illness9,2. This study focused on patients of complexity levels one and two10, accounting for approximately 95% of chronic disease patients in Ireland. Level three patients are those with complex conditions requiring specialist intensive intervention and are at high risk of hospitalisation; approximately 5% of the population10. Complexity level three patients were excluded from this study as these patients receive their care almost entirely from the hospital. Each of the 64 typical cases selected received a letter of invitation, patient information leaflet and reply form with a stamped address enveloped. Patients who replied were contacted and a suitable time for the interview was arranged. Participants were given choice in interview location. Interviews followed a topic guide that was refined following a pilot interview. Attention was paid to the need for amendments to the topic guide throughout the interview process, but none were required. Audio taped interviews were transcribed verbatim and identifying information removed. Transcripts were identified according to the first letter of the interviewer’s name and the chronological order when being transcribed. There were three phases of open coding, resulting in 1313 initial codes being reduced to 132 open codes. Collectively the authors grouped the open codes, identifying relationships between them, resulting in 16 axial codes. Axial codes were further grouped by identifying relationships between them and three themes emerged. Throughout the research process several steps were taken to ensure quality and rigour including use of an interview topic guide, reflexivity, fair dealing and member checking.
Twenty-four patients were interviewed, six from each of the four practices. Mean age was 60.58 years (range 21-89). There were ten male and fourteen female participants. Fourteen patients were GMS and ten were private. Twelve patients had one chronic disease, seven had two, while five had more than two. Three themes emerged- current care model, health literacy and treatment burden.
Current Care Model
This emerged from the experiences patients had within the settings their conditions are currently managed. A number of patients were satisfied with the care they received in hospital outpatient departments: "Well, I have...confidence in them (OPD)...they're very nice every time I go in…I get very good attention ...you know, you have to queue up that's about all." (C14) The majority of patients expressed a high positive regard for their GP care. They see their GP as their first contact when a health issue arises: "...he (GP) would be my first port of call...so I really have confidence in him (GP)." (C9) Aspects of GP care that contribute to this were the perceived qualities of their GP and personal relationship they have with them. Many felt a strong sense of confidence and trust in their GP and they also saw them as approachable, understanding and supportive. They value continuity of care and it is comforting to them that GP care is present throughout the lifecycle of the family: "…a lifetime coming to this practice…a family lifetime." (D3) They see their GP as the person who co-ordinates the care of their multi-morbidities, as well as being the gatekeeper to secondary care. Patients felt there were multiple barriers in accessing specialist care. These were appointment waiting times, distance to hospital, the need for use of annual leave to attend hospital appointments, transport to and from hospital, traffic involved, parking, waiting room times, expense and the physical demands of the process: "...we're 50 miles from Galway...I'm not a great traveller...your whole day is gone...plus you're very tired after that journey." (M16) However, patients regarded it as worthwhile to overcome these barriers because they value the opinion of a specialist. Another aspect of care that was often highlighted was communication between primary and secondary care. "...there has been no communication...between the...clinic and my GP...I can only tell him what I understand in the clinic." (M20) It was interesting to note a private patients' attitude to accessing specialist care. "...I can get an appointment within a week if I ring, I could get it within a day...I was going to him privately so you'd kind of expect some urgency...of being able to see him." (K23)
Health literacy encompasses the cognitive and social skills which determine motivation and ability of individuals to gain access to, understand and use information in ways which promote and maintain good health11. A number of patients had a poor understanding of their illness and lacked both knowledge and support for self-management of their chronic diseases: "…I never ask questions much about it because there's damn all I can do about it really...there's no point in me asking when I don't…understand it..." (D4) Patients primarily got information from their GP, either verbally or in the form of patient information leaflets: Some patients also refer to the internet, a healthcare professional in the family or peers as information sources. Age appeared to be a factor in this, with younger patients using the internet to source information rather than advice, and older patients relying solely on the GP for all information.
Treatment burden refers to the consequences people experience as a result of undertaking treatment and can have severe impact on the person, the healthcare system and society12. Increasing age emerged as a prominent factor in contributing to treatment burden: "...you're no good to nobody and you're just a burden...your feelings don't change, your mind doesn't change, your body does." (C12) Many patients expressed numerous fears including disease progression leaving them unable to manage at home and future financial burden: "…I will lose the medical card...I'll have to be much more careful…I'll do all I can you know to manage my problem at home." (K22)
The primary aims of this study were to ascertain the current setting of patient's healthcare provision, their preferred setting and why, and where patients source information on their chronic illnesses. We found that the patients in our study receive their care in a mixture of hospital and primary care settings, and there were high levels of satisfaction with both. A predominant finding highlighted by patients was that there are multiple barriers to accessing specialist care in the hospital setting as opposed to accessing care in primary care. Patients commented on the lack of communication between hospital clinics and their GP. The differences in waiting times for public and private clinics was noted. These findings were encompassed within the current care model theme. The other themes highlighted that in general levels of health literacy in the study group were low, with GPs being the main source of health information for patients. The impact of treatment burden on patients was noteworthy with advancing age being an important contributor.
The findings of our study correlate positively with two Irish studies on chronic disease management, one looking at the patient perspective13 and one looking at the GP perspective2. In keeping with our findings the former reported that "patients overwhelmingly view general practice as the optimal setting for management of their chronic disease”13. The latter study highlighted many of the issues in common with our study such as differences in waiting times for public and private patients, with many GPs perceiving that GMS patients often experience long waiting times, compared to 35% perceiving their private patients do2. They considered poor communication between hospital teams and GPs an important barrier to effective chronic disease management2.
Our study demonstrated poor levels of health literacy among patients in our sample, as well as treatment burden of chronic illness. There is limited Irish data on health literacy and patients with chronic disease. A 2013 American study concluded that patients with poor health literacy were five times more likely to attend the emergency department and seven times more likely to be admitted14. This highlights the importance of health literacy on effective chronic disease management. An Australian study echoed some of the treatment burdens identified in our study such as financial burden, time and travel burden and health care access burden12. A major strength of this study is that it is the first qualitative study to specifically look at the patient’s perspective of chronic disease management in Ireland, an area with a paucity of research to date. The study was conducted in the West of Ireland in a rural setting. We recognise that the results may not be generalizable, as the patient’s experience of chronic disease management is influenced by local factors, including the accessibility and level of services available to them. Other possible limitations were the potential for sampling and interviewer bias, which was minimised by the use of fair dealing, a standard interview topic guide, and reflexivity.
Arising from our study there are a number of implications for policy makers and general practice. At a policy level there needs to be strengthening of primary care to meet the needs of those with chronic illness. This should be taken into account in the development of the new GMS contract, with provision of funding for the management of chronic disease. Furthermore, we recommend the development of structured self-management education programmes for specific chronic diseases.
At a practice level, GPs could focus on the impact of health literacy and treatment burden on patients, alongside the clinical management of conditions. Helping patients to access the information needed to self-manage conditions and empowering patients to take part in the management of their chronic disease, would benefit both practices and patients. It is important when developing care plans for people with chronic diseases to adopt a holistic approach that is responsive to the patient's unique circumstances, taking into account how treatment burden impacts on the life of patients. Future research could explore the current care model theme to ascertain from patients what they feel could be improved in GP practices to help them manage their chronic disease. Further exploration of the multiple barriers to accessing special is care is warranted, with a view to exploring solutions to these barriers.
Conflict of Interest
None of the authors have any conflict of interest
Correspondence: K Browne
Western Training Programme in General Practice, Galway University Hospital, Newcastle Rd, Galway
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