Service Improvement theme. Chronic Kidney Disease. Home Therapy Dialysis Focus Group Report

Transcription

1 WEST MIDLANDS CENTRAL HEALTH INNOVATION AND EDUCATION CLUSTER (WMC HIEC) Service Improvement theme Chronic Kidney Disease Home Therapy Dialysis Focus Group Report Authors: Jackie Beavan Dr Sandeep Singh Randhawa October 2012 Contact for correspondence: gill.combes:bham.ac.uk

2 TABLE OF CONTENTS Executive Summary 1 Introduction & Background 10 National guidelines and policy drivers 11 Literature review home therapies 13 Literature review potential barriers to home therapies 13 Aims and Objectives 17 Methodology 17 Results 20 Demographics 20 Thematic Analysis 21 Wordle Summary 21 Discussion 23 Limitations 23 Conclusion 25 Research Team 25 Acknowledgements 26 References 27

3 EXECUTIVE SUMMARY The aim of this study was to explore patients and dialysis partners experiences of learning and making decisions about dialysis modalities. Patients who are already receiving dialysis at a West Midlands NHS Trust were invited to attend a focus group either at the University of Birmingham campus or in their local dialysis centres. In total there were 24 participants in 6 focus groups as well as 3 dialysis partners. The demographic details for the patient participants are shown below. Peritoneal dialysis Home haemodialysis Total Age* Gender Male Female Ethnicity White Asian Satellite haemodialysis African- Caribbean * 1 age missing On home therapy THEMATIC ANALYSIS Four major themes emerged on analysis and one minor theme. In addition, two groups expressed dissatisfaction with the renal services and details of this have been included. Themes were: Information and Choice Lifestyle (employment, travel, family, convenience) Confidence (self-efficacy, fear of self-needling, risk of infection) Physical and Technical Factors Cost (minor theme) The South Asian group voiced some specific concerns about dialysis services and some examples are given in addition to the main themes outlined above. 8 WMC HIEC Service Improvement Theme Report 3 1

4 INFORMATION AND CHOICE Information about dialysis was predominantly reported as being provided by renal nurses, although doctors, other patients, pre-dialysis conferences, the internet and books were also mentioned. Patients sometimes felt that information could have been given at an earlier point and that there was a tendency for doctors to suggest the best option for them. Not all patients were aware that haemodialysis was possible at home and some expressed the need for initial decisions, which were often made when they were ill and stressed, to be reviewed at a later date. I M3 I M3 I2 F1 Was there a choice given to you whether to do it at home? No, that wasn t given to me. It wasn t? Well, it was given to me, I think it was, I spoke to one of the patients there who said he was having it at home..but like no-one come to me and said, like, do you want to do it at home?. No-one s come to me and said that really. Is that everybody s experiences? Has anyone been given the option of having haemodialysis at home? No, I ve never heard of that. (In-centre HD patient: FG1) Furthermore, information was felt to be less than complete at times and there were some examples of significant misunderstandings by patients. Sometimes, what was perceived as incomplete information led to a gap between what was communicated pre-dialysis and the reality that faced patients when they actually started dialysing. Language barriers were a problem for some patients, who thought that communication between them and health professionals was poor. LIFESTYLE It became clear that individual patients lifestyles have a major influence on the choices that they make for their kidney care. When participants used the term lifestyle, it included the feasibility of paid employment, the ability to travel and take holidays and, notably, family commitments. Lifestyle was also often linked with ideas of convenience, freedom and control. Employment It was important for some participants to be able to choose a dialysis modality that fitted in with having a job. Depending on the sort of work they did or hoped to do, a specific option may be preferred. 23(M) Yeah it frees you up doing it on the night and then you ve got the day you could even get back to work if you can as well. Because that s my aim my aim 8 WMC HIEC is to Service try and Improvement get back to Theme work. Report 3 2 (CAPD patient: FG5)

5 Travel A number of participants commented on the possibility of travel, particularly for holidays. Some who are currently on haemodialysis felt this restricted their travel opportunities. 10(F) Mmm, yes. I mean we love going to faraway places like the very north of Scotland and north of Norway but we can t get there now but if I was on CAPD still I d be able to. (In-centre HD patient: FG2) Family Family considerations seemed to impact on the decision-making process in different ways. The importance of family support and involvement was highlighted in several focus groups, as well as, sometimes, a wish to protect them from the dialysis process. 13(F) I ve got these grandchildren and three days a week now is missing but when nanny s at home there s nothing, there s nothing to say that I m ill at all and especially because, like I said, [my partner] s not very good with this. He s not very good with illness and things like that and he d have to be, you know, there would be times that I need help so it was a decision I made on my own that I wanted to have four normal days a week and I get three because the rest of the time I m tired. (In-centre HD patient:fg3) Family also plays an important role in the decision-making process and whether to have home therapy. Some patients explained their wish to keep family and dialysis separate. 22(M) And I just didn t want something that brought home I just thought the children would find it too scary basically to have all the machinery and all the equipment at home really. (PD patient:fg5) However, this wish to keep dialysis separate from home and family appeared to have some inherent problems for some, in particular the amount of time spent away from the family when receiving haemodialysis in-centre. 22(M) Obviously one of the big things with haemodialysis is it takes you out of the house and takes you away from your family etc. for and I was working I d been working all that period of time. So it used to be that my wife used to joke that she was a single parent for 3 days a week, because I would be out - I d go to work at 7 o-clock in the morning and I wouldn t get back from dialysis until sort of half eleven at night. (PD patient:fg5) Family friendly and inclusive access to dialysis centres was felt to be important by a number of participants, particularly in the South Asian group. 16(F) I have a lot of complaints, now I m disabled and were told not to open the doors, they won t let our children and relatives come in. 8 WMC HIEC Service Improvement Theme Report 3 3 They should let our children see what is happening. Her partner comes an hour before and they are not accommodating at all, they send you away from outside. (In-centre HD patient: FG4)

6 Convenience This issue is linked with lifestyle and incorporates issues of time, transport issues, as well as freedom, independence and flexibility. The convenience factor was discussed by patients who felt that home peritoneal dialysis won out over in-centre haemodialysis in terms of travel, time and control. The concepts of freedom, independence and control were frequently alluded to, although they were not necessarily linked to 10(F) I knew straight away I wanted one specific dialysis modality. Some patients the freedom more than having felt that in-centre dialysis gave to come to hospital three them freedom on the days they did not times a week. It s like a huge dialyse, whereas others chose CAPD for chunk out of your life isn t it? the freedom from regular attendance to a (Patient who had satellite unit. chosen CAPD but who had to move to in-centre HD for medical reasons: FG2) CONFIDENCE Confidence seemed to be a significant factor in dialysis decision-making, whether that was the patient s confidence to cope with home dialysis, confidence in family members being able to assist or the confidence placed in health professionals to provide the best care. There was some discussion around self-efficacy (their belief in their ability to cope with home therapy) but there were also two specific concerns that recurred in the context of confidence, these being related to self-needling and the fear of infection. Self-efficacy Some participants felt they would not be able to cope with the burden of home dialysis and could not expect their families to commit themselves to their care. Others described their growing confidence and although they could understand those who were not so confident, they indicated the benefits of doing it for themselves. 4(M) Well, I m not so confident in doing it myself really. I prefer to go out and let somebody do it, because it s new to me you see. Maybe some way down the line I might but not at the moment. (In-centre HD patient: FG1) Fear of self-needling Reluctance to self-needle was a recurring theme in the focus groups. Fear of self- needling was discussed as was the feasibility of involving family members in the process. Underlying these issues, there was a deeply ingrained belief that the best standard of care is provided by health professionals and even they can get it wrong. 15(M) If I had the home one somebody s got to do the needling and I wasn t quite sure, it wasn t going to be me! [laughing] (In-centre HD patient:fg3) 8 WMC HIEC Service Improvement Theme Report 3 4

7 16(F) 17(F) I1 16(F) 18(F) 17(F) 20(F) No, I can t do injections. It would be so difficult. Our children, sons and daughters could learn who would be with us for the rest of our lives. So somebody from the family? It s difficult It s difficult and unlikely You would have to teach them [Multiple voices indiscernible]. Because doctors get it wrong (In-centre haemodialysis patients: FG4) Not surprisingly perhaps, it can be seen that self-needling is a barrier to choosing home haemodialysis and the size of the needle was acknowledged even by patients who were already using this modality. There were also some discussions about how to overcome some of these issues. 25(M) I went onto dialysis in August last year, my fistula, whilst it was working, it was very difficult to needle, so what I used to do is I used to watch the really experienced nurses where they could get it in first time and I d think, right, so if any of us had a problem, I used to go there and go there and you ll be alright. And then when I started to needle and [my partner] learned, I used to go right, go there, go there, you ll hit it. (Home haemodialysis patient: FG6) Risk of Infection In all focus groups it became evident that there was considerable fear and concern about the possible risks of infection from CAPD and sometimes, this was too great an obstacle to overcome. 17(F) No my brother died like this with infections at home with the bags whilst he was dialysing. The infections can be really bad. I1 Okay 19(M) The infections can be a lot. I1 Are you all worried about infections? Yes (multiple voices) (In-centre HD patients: FG4) PHYSICAL AND TECHNICAL FACTORS While the quality of information, lifestyle factors and confidence may all play important parts in decision-making about dialysis, many participants also indicated that physical limitations and technical issues often had the effect of limiting choice for them. 8 WMC HIEC Service Improvement Theme Report 3 5

8 Physical Limitations Existing co-morbidities, including poor eyesight, strokes, previous transplants, major abdominal surgery, as well as the nature of the renal condition itself, meant that free choice of dialysis modality was not a possibility for these participants. 22(M) I mean I like I say I had a stroke earlier on this year and that affects my eyesight, I've lost I'm now registered partially blind.. So I don t have the sight to actually do my own dialysis now. (PD patient: FG5) Technical Issues Several participants indicated that there had been problems with the actual process of dialysis that had led to their choices being limited. These problems include difficulty of access, including line or fistula failure in haemodialysis patients, and drainage problems in the case of CAPD. 3(M) My choice was actually almost forced onto me really because I ran out of options. I was doing the haemodialysis for quite a while, first through the lines. I ve had to have two lines because the one stopped working and they put a new one in I had the first one, that didn t work, so I had to go back to using the line. The second one, that also didn t work, and the third one I had also didn t work. I ve had three [fistulas], none of which worked, so I was running out of options and they said well, CAPD is the only option. (PD patient: FG1) COST This minor but interesting theme that emerged from the data may be related to the current economic climate. However, patients on home therapies appeared to understand financial implications and expressed almost utilitarian views. 22(M) I think it s the cost as well that got me because my brother checked on the cost like you know on the net I don t know how he found out but he actually found the cost of the haemoglobin [sic] one and the peritoneal.. and the two are like really astronomical you know they re the blood dialysis is really expensive and this one is a lot cheaper. I Mm. 22(M) So I said being there because I'm like that I said I'll go for the cheapest version. (PD patient: FG5) 8 WMC HIEC Service Improvement Theme Report 3 6

9 SOUTH ASIAN COMMUNITIES This focus group were largely unhappy and critical of their treatment. They were particularly concerned about infection and self-needling and felt that family members were shut out of the dialysis process. The relationship between patients and healthcare professionals appeared strained. 20(F) I1 20(F) But, the doctors at the [hospital] are very rude and very arrogant about everything Right When you go in, they don t welcome you. Not at all. One of the student doctor, because he was a student he had to go through it all, the rules and regulation. He went though all his procedures and everything. Except no other doctor went through the rule and regulation of the hospital. They don t welcome you. They don t explain it properly. Umm, they are arrogant. If they had to answer any other questions, they say excuse me, I haven t got time. The door s over there. (Carer: FG4) There were other complaints voiced in this group about service facilities, including equipment, staff attitudes and transport. Furthermore, the provision of interpreters was an issue, with family members in the main acting as translators which may not always be ideal. I1 16(F) I1 17(F) I1 18(F) When you went did you all speak in English or Punjabi? My daughter went with me? And she translated. Was this the same for everyone? My son went with me to speak English. Did anyone translate for you (directed to F3)? No, They just did blood and urine checks and told us to go. (In-centre HD patients: FG4) There seems to be a need to increase engagement with this particular population, which may help to build bridges for home therapies in the future. SUMMARY OF RESULTS It can be seen that the main factors for considering home therapy appear to be clear, timely and comprehensive provision of information, as well as lifestyle and convenience. Family considerations are also extremely important. The barriers appear to be low self-efficacy, perceived risk of infection (particularly in the case of CAPD) and fear of self-needling in haemodialysis. Some patients are, however, limited by physical or technical issues. RECOMMENDATIONS 1. Access to Information Some patients told us that they were either unaware of the full range of information sources about dialysis or were aware but had not 8 WMC HIEC Service Improvement Theme Report 3 7

10 been offered access to all sources. Ways of improving patient awareness and access to information from all available sources (health professionals, other patients, pre-dialysis conferences, the internet, etc.) could be explored. 2. Language Patients with little or no English said they felt disadvantaged and excluded in terms of communicating with health professionals. The extent to which language barriers are a problem could be examined and solutions negotiated, including professional interpreters or health professionals who speak community languages for significant consultations for minority ethnic patients. 3. Clarity Some patients told us that they had misunderstood the information given to them by health professionals. Reviewing the ways in which dialysis modalities are explained and the clarity of the terminology used could inform guidelines and/or training to improve communication. 4. Lifestyle Patients often linked dialysis decisions with lifestyle factors. Reviewing how and when these are discussed may suggest ways in which they can be effectively incorporated into the decision-making process. 5. Family Some patients, especially those from a South Asian background, reported feeling that family members were excluded from many aspects of dialysis. Practical ways of involving family and significant others, from initial information-giving, through training and decision-making to receiving dialysis, may enhance awareness and improve uptake of home therapy. 6. Self-needling Concerns about the need to self-needle were often offered as a reason not to home-dialyse. Opportunities for building confidence in selfneedling (or needling by a dialysis partner) in dialysis centres could be explored so that this becomes the norm wherever possible. 7. Infection Risk Those patients who were strongly opposed to peritoneal dialysis were mainly concerned about the risk of infection. A review of how patients and dialysis partners are educated and trained in this aspect may suggest ways of addressing fears and increase uptake of this modality. 8 WMC HIEC Service Improvement Theme Report 3 8

11 8. Peer Support A number of patients told us that that they would value the opportunity to talk to other patients on dialysis. Options such as a buddy system, social networking and internet forums could be made available whereby patients interested in home dialysis could receive extra sources of support and guidance. 9. Annual Review Patients said that they were often shocked, ill and frightened when they made their initial decision and were subsequently unsure that their current modality was the best for them. The opportunity to reconsider the initial decision could be offered regularly and a dialysis anniversary (similar to a transplant birthday ) could routinely include a formal review. 10. Patient Feedback There were some complaints about renal services that patients felt were going unheard. Current methods of eliciting patients views and dealing with complaints could be reviewed and evaluated to ensure relevant dialogue. CONCLUSION / SUMMARY Findings from these focus groups would support increased access to a range of information sources and choice of options for all patients. To increase uptake of home therapies, any decisions made need to be reassessed on a regular basis. A dialysis anniversary for all patients could give them an opportunity to revisit the available options once they have adjusted to their diagnosis of end-stage renal failure. Family-friendly units and an ethos of inclusivity may help to engage patients and family members who are potential carers and dialysis partners in home settings. Full consideration of lifestyle factors also appears to be important. Improvements in transportation to satellite centres are much needed as this appears to have major influence on time and convenience for in-centre patients. The barriers of self-needling and perceived infection risk also need to be considered and overcome with appropriate information, training and resources. Finally, more effective ways of engaging with South Asian patients must be sought if home therapy is to become a real option for this group.n.b. A full report has been shared in confidence with the West Midlands NHS Trust who participated in this study. 8 WMC HIEC Service Improvement Theme Report 3 9

12 Introduction & Background End-stage renal failure (ESRF) is the result of progressive disease of the kidneys leading to the irreversible loss of function and corresponds to the National Institute of Clinical Excellence (NICE) Chronic Kidney Disease (CKD) Stage 5 [1]. A few decades ago this condition was fatal as there were no specific renal replacement treatments available. Kolff [2] has described the trials and tribulations experienced in the pioneering work on the first haemodialysis machine. This major breakthrough during the Second World War has since evolved as one of the main treatment options for end-stage renal patients globally and is a life-saving therapy for thousands of patients today. In the UK alone there are approximately over 40,000 patients currently on the renal registry receiving renal replacement therapies as per the 13 th Annual Report from December 2010 [3]. Haemodialysis contributes to approximately half of this number. The numbers of patients on the Renal Registry has been increasing on an annual basis by approximately 5% per year [4]. This is likely to increase in the future with aging populations and medical co-morbidities and current projections suggest that numbers of patients needing dialysis will increase to 45,000 in the near future [5]. In turn the increased pressure on resources and finances is likely to be a major burden. Current cost estimates suggest that the treatment of ESRF is disproportionately costly using up to 2% of the NHS budget for less than 0.05% of the population [6]. Furthermore, in considering each dialysis modality, haemodialysis in a main hospital unit costs 35,000 per annum per person whilst at satellite centres costs are approximately 32,500. Home therapies, however, are significantly cheaper. Home haemodialysis costs approximately 20,700 whilst costs for automated peritoneal dialysis (APD) and continuous ambulatory peritoneal dialysis (CAPD) are 21,600 and 15,500 respectively. Indeed, it has been suggested that if just 30% of dialysis patients were treated at home it could save the NHS over 100 million per annum [7]. Thus home therapies are considerably cheaper to deliver than hospital based dialysis. Offering home therapies to a larger proportion of patients could yield significant cost savings and also provide potential to expand future dialysis capacity in a cost effective manner. 8 WMC HIEC Service Improvement Theme Report 3 10

13 Over the past three decades the Renal Registry has shown that the relative growth of treatment modalities for individuals has seen an increase in the proportion of patients on haemodialysis and a decline in patients on home dialysis. Numbers for peritoneal dialysis have remained fairly constant. Thus, over time the proportions of patients on home therapy have indeed declined in the UK. Hence there is an urgent need to find efficient and cost-effective modalities for mass dialysis numbers and appropriately configuring service provisions. Increasing access to home therapies will allow commissioners and stakeholders to manage down the cost of delivering dialysis services. This need has led to a drive to improve services and to increase availability, access and uptake for home therapies. There is no shortage of studies supporting an increase in home therapies and the initiative is also endorsed in a number of national policies and guidelines National Guidelines and Policy Drivers NICE (TA 48) Home versus Hospital Haemodialysis Home haemodialysis has been evaluated and endorsed by NICE since 2002 [8] who recommend that all patients who are suitable for home haemodialysis should be offered the choice of having haemodialysis in the home or in a renal unit. There should also be a full assessment of the patient s healthcare needs and social and home circumstances. The team responsible for the patient s care should give the patient, and anyone who might be a carer, full information about what is involved in carrying out haemodialysis in the home or in a renal unit, and what impact it could have on their lives and the life of the rest of the household. NICE also recommended that patients having haemodialysis in a renal unit who have not previously been offered the option of having home haemodialysis but who would like to consider the possibility should be reassessed, provided that their clinical condition does not rule out home haemodialysis. It should be noted that The Renal Association Guidelines [9] recommend that all patients should be encouraged to perform home dialysis therapy where possible. National Service Framework for Renal Services This document [4] has emphasised the need for the NHS to deliver five standards in this area including 8 WMC HIEC Service Improvement Theme Report 3 11

14 - A patient-centred service - Preparation and choice - Elective dialysis access surgery - Dialysis - Transplantation These standards emphasise the need for patients to have access to information that enables them with their carers to make informed decisions and encourages partnership in decision-making in their care for the best of quality of life possible for personalised individuals needs. Furthermore, the importance of choice for clinically appropriate treatment options is foregrounded. There are 30 markers of good practice for these standards which include access to home haemodialysis and also automated peritoneal dialysis available interchangeably. Transport is mentioned as well as the provision of high quality, culturally appropriate and comprehensive information and education programmes tailored to the needs of the individual. These should include individual care plans which are regularly audited, evaluated and reviewed. Commissioning for Quality and Innovation (CQUIN) The payment framework by performance [10] includes the renal exemplars of home dialysis and highlights the need to improve patient experience of renal dialysis through improved access to home therapies. The rationale for inclusion here includes the aim of home therapies helping to promote autonomy and choice as well as making renal care more personalised and improving clinical outcomes. Achieving this goal will therefore enhance both effectiveness and the patient experience of dialysis. The report recommends that providers should aim for over 35% of prevalent dialysis patients to be receiving home haemodialysis, made up of a minimum of 10% of current dialysis patients receiving home haemodialysis and a minimum of 25% receiving peritoneal dialysis or assisted automated peritoneal dialysis. These targets are the current main policy drivers. The literature supporting home therapies specifically will now be reviewed briefly. 8 WMC HIEC Service Improvement Theme Report 3 12

15 Literature Review Home Therapies Home therapies have been proven to be effective and cost-effective. As highlighted in the executive summary of a report by the WMC HIEC [11], there is evidence to suggest that home haemodialysis is clinically effective and results in higher quality of life and longer survival time than centre-based haemodialysis [12-15]. Furthermore, home delivery of dialysis, through haemodialysis or peritoneal dialysis, has been shown to be cheaper and more cost-effective than either hospital-based haemodialysis or satellite-unit based haemodialysis [6, 8, 12, 16-19]. The ability to dialyse nocturnally and for longer hours at home may also be key to improvements in patient wellbeing, and allows greater freedom for patients to maintain employment and a better lifestyle [12, 20-21]. Patients value greatly the ability to maintain a sense of control over their health and treatment [22-23]. However, family members acting as carers may experience additional stress as a result of the increased demands on them to assist in dialysis at home [8, 22]. There are criticisms of the existing evidence and despite the acknowledged advantages of home dialysis, wide variations persist in the availability of home haemodialysis internationally [24]. Undoubtedly, there are many barriers to patients choosing home dialysis and the evidence for these is considered below. Potential Barriers to Home Therapies A number of factors appear to be implicated in the variation in the prevalence of home dialysis. Blagg s 2005 review [25] of home haemodialysis identifies a number of barriers that have impacted on home haemodialysis since its introduction in the 1960s, including the need for space for the equipment and to store supplies; the need for modifications of domestic plumbing and electricity and increased utility bills; the need for help from a family member or other carer; and the general impact on the family. Many of these early barriers have been overcome by innovations in technology but a number of other reasons for the decline in home haemodialysis in the USA were cited, including lack of motivation amongst for-profit dialysis units to set up home haemodialysis programmes and lack of encouragement by nephrologists and staff with little or no experience of home haemodialysis. Patients were also put off by the 8 WMC HIEC Service Improvement Theme Report 3 13

16 extra time and effort involved, the thought of needling themselves, technical aspects, and concerns about being isolated [25]. Other commentators have suggested likely barriers to home haemodialysis. Agar et al [26] cite the following limiting factors: convenience; staff and administrative comfort, inertia and/or lack of interest in additional programme development; uncertainty regarding the published outcome data from new modalities; and fear of potential negative budgetary implications. Kjellstrand et al [15] focus specifically on barriers to the adoption of daily dialysis and conclude: Logistical problems, conservatism by physicians and nurses, worries about expenses by government, businessmen and administrators, the decline in training of physicians and nurses and training units for home haemodialysis, unavailability of haemodialysis machines suitable for the use at home and patient worries have made the introduction of daily haemodialysis slow and difficult. (Kjellstrand et al, 2008: 3288). Studies have also been conducted to explore barriers to adoption of home therapy services in more depth. Zhang et al [27] conducted an observational cohort study examining 486 patients with CKD in Toronto, Canada, from 2001 to They found that the main barriers to home dialysis were lack of interest from patients and their families (25.4%) and lack of social support (12.1%). Medical contraindications for home dialysis were present among 11% of patients, and other stated barriers were inadequate space (5%), communication barriers (5%) and inability of patients to perform their own dialysis (3%). Another Canadian study surveyed in-centre haemodialysis patients to explore reasons why they did not choose to perform self-care dialysis [28]. The study identified barriers related to knowledge (lack of a satisfactory explanation of the various techniques), skills (such as those needed for self-needling), lack of space at home, and attitudes (fear of substandard care, fear of change, fear of social isolation, and unwillingness to remain awake during dialysis). A large Dutch prospective multi-centre study by Jager et al (2004) [29] asked nephrologists to indicate the most important reason for the modality selection (haemodialysis versus peritoneal dialysis) of 1,347 new patients with end-stage renal disease (ESRD). In total, 29% of participants had contraindications to peritoneal dialysis and 7% had contraindications to haemodialysis. The most frequently mentioned contraindication was social: the expected incapability of patients to 8 WMC HIEC Service Improvement Theme Report 3 14

17 perform peritoneal dialysis exchanges themselves. Older age increased the odds of choosing haemodialysis, whereas receipt of pre-dialysis care was associated with higher preference for peritoneal dialysis. The above study reinforces findings from an earlier study in the USA, exploring modality assignment among new end-stage renal disease patients [30]. In this study, the selection of peritoneal dialysis over haemodialysis was significantly associated with younger age, white race, fewer co-morbid conditions and lower serum albumin. Greater use of peritoneal dialysis was seen in patients who were: employed, married, living with someone, had higher educational attainment, were referred earlier to a nephrologist, and seen more frequently by a nephrologist in the pre-dialysis period. The effect of pre-dialysis processes on the selection of renal replacement therapy was explored in a survey-based study conducted in the USA in 2002 [31]. It found that the majority of pre-dialysis patients were not presented with chronic peritoneal dialysis, home haemodialysis or renal transplantation as options (66%, 88% and 74% respectively). Thirty per cent of patients reported that treatment options were not presented to them until dialysis was started, and 48% reported that the treatment options were presented either after the first dialysis or less than one month before the need for the first dialysis. Variables significantly associated with selection of chronic peritoneal dialysis were the probability of that modality being presented as a treatment option, and the time spent on patient education. The authors concluded: This study suggests that an important reason for the relatively low utilization of home dialysis therapies in the United States arises from the inability of providers to present chronic peritoneal dialysis or home hemodialysis as alternatives to in-center hemodialysis or to spend enough time in explaining the treatment options to incident ESRC patients (Mehrotra et al, 2005: 389)[31] However increased numbers of patients do choose home dialysis following patientcentred educational interventions [32-34]. The importance of improved education for healthcare professionals has also been recognised [25, 35-36]. 8 WMC HIEC Service Improvement Theme Report 3 15

18 In summary, there are several known barriers to home dialysis including; patients not being presented with home dialysis options nor receiving sufficient patient education about different treatment modalities; lack of training programmes for healthcare practitioners; physician and patient conservatism; lack of social support; perceived inability to perform self-care dialysis; as well as medical contraindications. However as highlighted by the current policy drivers, there is an important need to increase home therapies to cope with growing demand as well as giving patients more autonomy in their own care. This study explores the views and experiences of a West Midlands NHS Trust s renal patients who are currently receiving dialysis, with the aim of eliciting the factors that were important to them when they decided on a dialysis modality. In six focus groups, participants shared their stories of growing up with kidney problems, of being shocked by a sudden and unexpected diagnosis of kidney failure or of gradually sliding into end-stage renal disease with the threat of dialysis hanging over them like the sword of Damocles. They talked about the people who had helped them make important treatment decisions, about the impact on their lives and their families, about their concerns and anxieties and sometimes about their frustrations with the services that were there to help them. There were young people who had seen their expectations of the future drastically changed, parents who were juggling the demands of being on dialysis with bringing up a family and people who had found their relationship with their partners had changed irrevocably. Some tried to rationalise and explain what had happened to them, sometimes by resorting to unlikely theories, some were very clear about what had led to their kidney disease. They were all in some way trying to come to terms with a way of life that most people would find onerous and restrictive. As one participant observed of new renal patients, They ve got to realise that, once kidney failure has been diagnosed, their life, irrespective of their lifestyle, will not ever be the same again. We are indebted to these patients and their dialysis partners for sharing their experiences with us. 8 WMC HIEC Service Improvement Theme Report 3 16

19 AIMS & OBJECTIVES The aim of this study was to explore patients and partners experiences of learning and making decisions about dialysis modalities. The objectives were: 1. To promote discussion about renal dialysis in a number of focus groups involving patients currently on dialysis. 2. To include the views of dialysis partners. 4. To elicit factors contributing to patients choice of dialysis modality. 5. To identify potential barriers to opting for home therapies. 6. To explore these issues in patients from different ethnic backgrounds, including South Asian. 7. To use focus group data to inform suggestions for improving uptake of home therapies. Methodology. This study was approved by the Science, Technology, Engineering and Mathematics Ethical Review Committee ERN_ on the 1 st August Permission to run focus groups with renal patients at satellite haemodialysis centres was granted by the Fresenius Medical Group. The study commenced in September 2011 and concluded in December Six focus groups were conducted, with the aim of eliciting views from a wide range of renal patients currently on dialysis. One or more dialysis partners were present in two groups. The groups were as follows: A pilot group of mixed patients Patients at Haemodialysis Satellite Centres Peritoneal Dialysis patients Home Haemodialysis patients Focus groups were considered an appropriate method for this study as we wished to seek insights into attitudes, opinions and underlying assumptions and to allow participants to discuss each others perspectives [37]. It also allows for researchers 8 WMC HIEC Service Improvement Theme Report 3 17

20 to get in-depth responses and clarify content and thus remove ambiguity of statements. As well as the verbal information, much can also be gleaned by the nonverbal communication of participants. The participating West Midlands NHS Trust database of renal patients was utilised in accordance with the Data Protection Act and purposive sampling was used to identify suitable patients who had recently commenced on dialysis within the previous 2 years. Although emphasis was given to recruiting patients who had started their current dialysis modality within the past two years, it was necessary on occasions to widen participation for all patients to be considered at the satellite centres, including the South Asian group. Recruitment methods included telephone and face to face recruitment. The latter was utilised in the haemodialysis satellite groups only to increase uptake and participation in the study.. Patients who agreed to participate were invited along for a focus group either at the University of Birmingham campus or in their local dialysis centres. Complimentary food and drink was provided for the participants and travel expenses reimbursed. Patient consent was confirmed prior to undertaking the focus group. The consent proforma for the study is attached in Appendix 4. This highlighted for patients that information would be confidential, anonymous, recorded, transcribed and quotes utilised for the research. Patients were also informed of their right to withdraw consent at any point during or after the focus groups. Approximately one hour was allocated for each focus group (excluding 30 minutes for refreshments For each of the focus groups, two independent researchers cofacilitated to aid in the triangulation of the analysis and robustness of the study design. Both researchers were present for all of the focus groups and the audio recordings of each focus group were made available for the two research team members. The audio-recordings were transcribed to aid analysis. All transcripts were proof-read against the audio- recordings by the researchers to ensure that there were no discrepancies in the data and also for consensus when any queries were raised by the transcribers. 8 WMC HIEC Service Improvement Theme Report 3 18

21 It should be noted that this was also undertaken for the Punjabi focus groups whereby cultural interpretation of language content was considered important and thus necessitated double transcription from Punjabi English translation and subsequent consensus by appropriately trained staff. NVIVO 9 [38] was used to assist the process of qualitative analysis and appropriate subsequent statistical analysis. Independent analysis was undertaken by each researcher and thence corroborated for triangulation and consensus of the data set. A grounded theory approach to the data set was implemented by both researchers. 8 WMC HIEC Service Improvement Theme Report 3 19

22 RESULTS In total there were 24 participants in all of the focus groups including 3 dialysis partners. The demographic details for the patient participants are shown below. DEMOGRAPHICS Identification Age Gender Ethnicity Dialysis Modality Date started dialysis 1(F) FG1 23 F W PD (F) FG1 43 F A PD (M) FG1 54 M A/C PD (M) FG1 43 M A/C HD (M) FG1 25 M A HD (M) FG1 28 M A HD (F) FG2 35 F A/C HD (F) FG2 52 F A/C HD (F) FG2 42 F A HD (F) FG2 50 F W HD no data 11(M) FG2 56 M A/C HD (F) FG3 81 F W HD (F) FG3 56 F W HD (M) FG3 62 M W HD (M) FG3 63 M W HD (F) FG4 53 F A HD (F) FG4 71 F A HD (F) FG4 55 F A HD (M) FG4 58 M A HD (F) FG4 Dialysis partner 21(M) FG4 Dialysis partner 22(M) FG5 44 M W PD (M) FG5 42 M W PD (M) FG5 80 M W PD (M) FG6 47 M W HHD (M) FG6 70 M W HHD (F) FG6 Dialysis partner NOTE date of starting dialysis is entry to renal registry and not the time that the patient began on the specified dialysis modality 8 WMC HIEC Service Improvement Theme Report 3 20

23 The mean age of patient participant was 50 years. The male: female ratio was 13:11 i.e. 54% vs 46%. Furthermore the ethnic grouping showed 21% Afro-Caribbean, 33% Asian and 46% White. In terms of dialysis modality, 67% were on haemodialysis, 25% on peritoneal dialysis and 8% home haemodialysis. THEMATIC ANALYSIS. A number of themes emerged on analysis and these are highlighted in the table below alongside the number of sources (focus groups) that represented each theme and the total of references for each theme. Theme Sources References Information and Choice Lifestyle Confidence Physical & Technical 6 41 Cost 4 5 A detailed presentation of results was shared with the participating West Midlands NHS Trust. Summary of results The main factors for considering home therapy appear to be clear, timely and comprehensive provision of information, as well as lifestyle and convenience. Family considerations are also extremely important... The barriers appear to be low selfefficacy, perceived risk of infection (particularly in the case of CAPD) and fear of selfneedling in haemodialysis. Some patients are, however, limited by physical or technical issues. Wordle Summary As an adjunct to the content analysis the programme Wordle [39] was also utilised for visual presentation which is highlighted in Figure 1 below. Wordle is an online word cloud programme which represents words present in text more frequently in a respectively larger scale. Wordle has been utilised previously in qualitative studies [40] and perhaps may be an emerging adjunct for future studies. 8 WMC HIEC Service Improvement Theme Report 3 21

24 NB please note that words appearing too small to read on the above figure will have been generated by the programme at that specific size to highlight the fact they were not frequently used responses/themes 8 WMC HIEC Service Improvement Theme Report 3 22

25 DISCUSSION A number of themes emerged on analysis of the focus group transcripts. It was not usually the case that one single factor influenced a patient to choose a particular dialysis modality, rather it would seem that a range of factors usually intersected in the process of making a decision. Primarily, how information is given (and received), when it is given and by whom are all important in how patients make their choice. After making a decision, there is also the issue of whether patients have the opportunity to reconsider their options further down the line. Secondly, lifestyle factors, including work, family, travel and convenience, appear to be significant in the decision-making process and present a complex picture that is worth further exploration. Thirdly, patients confidence in their own ability to cope with home therapy was frequently discussed. This included the perceived ability of the family to cope, the capacity to self-needle and the confidence to cope with the management of infection control. Fourthly, many patients can not be deemed to have a free choice as they have medical contra-indications to receiving certain kinds of dialysis or they experience technical difficulties which force them to move to another modality. Finally, there was a minor theme of cost, a small number of participants mentioning it as a factor in their decision, The focus group that included patients and dialysis partners from the South Asian community touched on most of the topics mentioned above but also voiced a number of grievances which it was difficult to locate within the remit of this study. However, they seemed important enough to merit a section of their own. N.B. The full discussion was shared with the participating West Midlands NHS Trust Limitations It is worthwhile reviewing some of the potential limitations of this study relating to focus groups. The numbers involved here are relatively small and represent only approximately 2.5% of the dialysis population which makes generalisability from the dataset somewhat more difficult. It should however be noted that many of themes had a recurrent presence in each of the focus groups which increases their significance overall. 8 WMC HIEC Service Improvement Theme Report 3 23

26 Furthermore, it must also be considered that the patients participating are more likely to be interested in their own health and again may not necessarily typify the population. Although patients recently commenced on dialysis were primarily considered it was necessary with satellite centres to increase the inclusion criteria to ensure an adequately sized focus group was obtained. Overall the focus groups showed a good proportion of ethnic background patients. For focus groups there is a risk that participants will concur with the group s consensus opinions and not necessarily air their own personal views. Although this was apparent on the odd occasion it was not a recurring problem and did not appear to unduly influence the overall outcomes from the focus group. The other risk of focus groups is that there is a dominant participant who over-controls the group. The experience of moderators is thus vital and in these groups the moderators had had previous experience of focus groups to allow all participants to contribute to the overall discussions. It should also be noted that for recruitment approximately half of patients who actually agreed to attend did so for various reasons, often connected to their state of health. Thus results may be skewed by the greater inclusion of patients who were in better health at the time at which the focus groups were held. Overall however it was felt by the research group that a balanced view had been appropriately sought from all participants and contributed to an overall rich data set. 8 WMC HIEC Service Improvement Theme Report 3 24

27 CONCLUSION In summary, this report would recommend increased access to information and choice of options for all patients, provided in a standardised manner with an emphasis on pre-dialysis education programmes. Furthermore, to increase the uptake of home therapies, options need to be reviewed on a regular basis, perhaps using a concept such as a dialysis anniversary, with all patients once they have adjusted to their diagnosis of end-stage renal failure. Family friendly units and inclusivity at all stages in the process is essential in helping to engage patients and families and thus potential carers and dialysis partners in home settings. Considerations of lifestyle and convenience are also vital. It is important to help improve transportation to and from centres for dialysis patients as a way of improving current services as this appears to have a major influence on time and convenience for in-centre patients. The main barriers of poor self-efficacy, fears about self-needling and concerns about infection risk need to be considered and overcome with appropriate information, education and resources. Finally in considering the achievements of Willem Kolff and the first kidney dialysis machine, it is worth remembering that Kolff continued to try and develop further dialysis devices. The aim of this was to provide simple, cheap, practicable and portable devices for renal patients. This issue remains as important today as it was then with the emphasis now though on home therapies. Research team It should also be noted that the authors have no specific attachments to the West Midlands NHS Trust and thus have acted as an independent research team. One of the research team has had many years of experience in health-related research and specifically within focus group settings and qualitative data analysis. The other team member is an academic general practitioner who was incorporated into the study in view of his clinical background and multi-linguistic ability. The latter allowed the opportunity to undertake South-Asian population focus groups in Punjabi-Urdu mother-tongue. 8 WMC HIEC Service Improvement Theme Report 3 25