Understanding the low take-up of home-based dialysis through shared decision-making: A qualitative study

Background Despite home dialysis having many advantages, take-up by people with established renal failure is low in many countries. Previous studies highlight complex social, psychological, economic and health-system obstacles to patients choosing home dialysis. The study explored how people who are pre-dialysis, caregivers and health professionals together navigate common shared decision-making processes, and assesses how this impacts on choice of dialysis, conservative treatment or transplant. . qualitative study From the decision-making process and amongst all involved. Patients and caregivers came with varying levels of prior knowledge and understanding, which can result in misinformation and biases that contaminate the shared decision-making process. This is not always recognised by renal professionals. Presentation of treatment options through education programmes was often found to be inadequate, biased or poorly understood. Such deficiencies create partialities towards some treatments and, in particular, mitigate against the take-up of home therapies, even when they may be the most appropriate. A logic model and a road map to further evolving clinical practice was developed. There are critical points in the process at where change could benefit patients. Patients need to be better prepared and their preconceived ideas and misconceptions gently challenged. Healthcare professionals need to update their knowledge in order to provide the best advice and guidance. Shared decision-making processes need to be individually-tailored so that there is more attention paid to the benefits of home based options, and on people who could chose a home therapy but select a different option.

supply of water [17], but studies also find a complex mix of more intractable social, psychological, economic and health-system obstacles to home dialysis [8,14,18].
Gaining a better understanding of the factors that impact on treatment choices, and specifically to better understand why so many patients default to centre-based dialysis was the aim of the 'Dialysis Options and Choices Study' [19]. This two-year mixed method co-productive study integrated analysis of electronic renal patient records with documentary analysis of pre-dialysis education programmes, interviews with pre-dialysis patients and their families, and interviews with renal professionals, and a health economics analysis of dialysis modalities. This paper presents findings from the study [19] examining the factors that impact on pre-dialysis choices made by patients. Framed within a model of shared decisionmaking, we examine existing approaches to pre-dialysis education offered to people.
Using qualitative methods we explore what patients, and caregivers actually understand about the disease, the prognosis and the treatment options, how people's values and preferences impact on their choices, and the extent to which these are elicited by clinical teams within the shared decision-making process. In the context of diverse service provision within a health-care system, the paper concludes by setting out options to improve health and care practice and services towards meeting the policy intent of increased uptake of home therapies.

Methods
This was a qualitative study using the framework method [20] of data collection and analysis and reported using the Consolidated Criteria for Reporting Qualitative published elsewhere [19].

Theoretical Framework
The study was informed by theory underpinning the MAGIC (Making Good Decisions in Collaboration) model and intervention designed to test and identify the best ways to embed shared decision making into routine primary and secondary care [22]. Shared decision-making proposes that informed preferences-by which is meant what matters to people with health needs and families-should play a major role in decision-making instead of the assumption that decisions should be guided by scientific consensus about treatment effectiveness [23]. The MAGIC programme provided a multistage consultation process for decisions -such as dialysis modalityinvolving a 'Three-talk model' for shared decision-making ( Figure 1) with the sequence of choice, option and decision talk [13,23].

Setting
The study took place in Wales, a semi-autonomous country within the United Kingdom with a publicly funded healthcare system. There are five renal centres across the country with services commissioned, monitored and audited by the Welsh Renal Clinical Network (WRCN). Incidence and prevalence of dialysis is higher in Wales than in other parts of the United Kingdom and despite half of patients being suitable for home therapies [24] only 12.9% receive peritoneal dialysis (PD) and only 6.1% home haemodialysis (HHD) [25] with significant variation in patient modality choice across the country. Wales provides an ideal setting for this study being a small but diverse country with a publicly-funded national health system, socio-economic and geographical variation, and a number of renal centres with different systems and practices. Ethical approval for this study was granted by the Wales Research Ethics Committee (Ref. 19/WA/0020).

Patient and Public Involvement (Co-production)
This was a co-productive study meaning that from inception to dissemination, academics worked together with those who commission, audit, provide and use renal services to improve provision through research. The co-productive approach is reported elsewhere.

Documentary analysis of patient education materials and practices
To identify and compare the topics and content, mode of delivery and range of resources used in education programmes to assist patients in dialysis decision making, we collected documents, resources and information on how education is delivered to patients and caregivers. In total, 44 separate booklets and leaflets were collected along with the education pathways followed across the five renal centres. The material was scanned with optical recognition software and imported into Nvivo 11software (QSR International).

Patient and caregiver interviews
People were eligible for the study if they were adults with AKD and had received formal pre-dialysis education and had, or were in the process of making a choice about treatment. Caregivers 1 were also eligible. Late-presenting patients were excluded. We ascertained the overall number of eligible pre-dialysis patients from the electronic patient record and established other criteria including location, treatment option, eligibility for home therapy and included additional characteristics of interest 1 Defined as a close friend or family member -who in the broadest sense -takes responsibility for looking after another person. While the term 'caregiver' is common parlance in this Journal and is used throughout this paper, it is not unproblematic. Many family members in our study did not see themselves as providing health-related care and the possibility of becoming a carer for a dialysis patient could be a barrier to home therapy choice.
in the group (such as gender, age, ethnicity, income, living alone etc.) to establish a sampling frame to ensure the theoretical requirements of the study.
Potential patient participants were identified by team members in each renal centre, provided study information and asked to complete a form consenting to be contacted by a researcher. This process ensured personal data was not shared between institutions. The researchers contacted potential participants, introducing the study, themselves, their roles and were able to answer queries. Further study information and consent to interview forms were sent to participants before interviews were arranged in mutually agreed locations.
Semi-structured interviews of between 30 and 90 minutes took place mainly in participant's homes and in most cases people with AKD were interviewed alongside caregivers.
The interview guide (Online appendix 2) was informed by the 'Three-talk' model ( Figure 1) and a review of the literature. It was piloted and refined through discussion within the research team and with partners.
Data collection continued until saturation was reached. Table 1 summarises the sampling and characteristics of participants. No participants were interviewed more than once. their respective renal centre. While transcripts were not participant-checked, coproduction facilitated broader patient and caregiver feedback on the findings.

Education material
We constructed an a priori framework and used content analysis [26] to systematically read and code the material. Sources were classified by renal centre and original source (publisher) and inductively assigned a 'type' classification indicating the primary purpose of the information. Using automatic and manual searches content was coded against a pre-defined list of treatment options -transplant, unit-based haemodialysis (UHD), peritoneal dialysis (PD), home haemodialysis (HHD) and conservative careand for the 'Three-talk' model for decision-making [13].

Interviews
We used three levels of framework analysis to organise and code interview data.
Framework analysis provides a systematic analysis process that can be replicated by others [27]. Level 1 used a modified version of the 'Three-Talk' model ( wide range of co-productive partners were involved in the interpretation and validation of the findings, subthemes and themes. As part of the wider mixed-method study we routinely integrated the qualitative data with clinical audit and health economics data utilising methodological triangulation to assure validity. Themes from findings were first organised according to the stage of decision-making (Table 2) and subsequently into a logic model (Table 3). There is no uniform template for developing logic models, although a common approach involves organising the findings of the qualitative study into chains of events [28] which can inform the development of a road-map for service delivery change (Table 4).

Findings
Consistent with our methodology, findings are therefore presented within the context of our modified 'three-talk' model ( Figure 2). More detailed findings with illustrative quotes from interviews are set out in Table 2 under the same headings.  (Table 2).

Choice talk
Choice talk is about making people aware that reasonable options exist. Ideally, the making compared with face-to-face encounters with health professionals, the lack of focus on home therapies in education material contributes to unnecessary bias.

Options talk
Options talk is about health professionals, patients and wider networks including caregivers discussing alternative options (including the option of no treatment) and the inherent disadvantages / advantages and risk levels of each. It is often seen as the pivotal stage of shared decision-making and where the professional often has no clear preference about the most effective treatment choice.
Despite protocols, we found that amongst health and care professionals, patients and caregivers, home therapies were rarely presumed to be the norm. Clinicians said that presenting dialysis options was often hindered by a lack or misdirection of resources, staff, heavy workload and time restrictions for consultations. As illustrated in Table 2, barriers to the promotion of home therapies including the expansion of haemodialysis satellite units, patient and caregiver opposition to medical equipment or treatment in the home, concerns about infection risk and potential for social isolation. Perceptions that home therapies are burdensome on family and caregivers was a common theme as were concerns over desegregation of health needs and personal life. Some professionals told us that they lacked the necessary in-depth knowledge of home therapies to offer clarity of options.

Decision talk
Having been informed of the treatment choices available to them, shared-decision making should involve health professionals supporting patients and exploring what matters most to them so that they can express an informed preference and supported by their caregivers, a good decision can be made.
While some people with AKD described one main reason for their choice of treatment, others could not articulate clearly why they had opted for a treatment, suggesting the use of heuristics in some cases and in others, deference to clinical authority. Many people with AKD described a gradual process of decision-making and reflected on the benefit of being able to make their choice over a period of time.
Others felt unable to make a choice, despite having often known for months or even years that they would need dialysis. In some cases this was linked to strong emotional reactions to ERF leaving them unable to make decisions or too scared to consider home dialysis. Others were not adjusted psychologically and emotionally to the need for dialysis. Many were anxious while others were depressed. This was not always recognised by professionals and consequently sufficient support was not always available. This in turn impacted on people's ability and confidence to choose home dialysis. Fundamentally we found that when free to make a choice (notwithstanding comorbidities) most people make dialysis choice based on values and lifestyle with little consideration to efficacy of treatment options. This is where we observed some differences in approaches to shared-decision making between clinicians and other renal team members. I just kept going for blood tests, but no-one said why… The last one I had which was about two or three months ago, they turned round and said, "Your blood count or your kidney function has gone down, at 19. If this one goes down again we're gonna refer you for dialysis and then kidney transplant," and that's the first I heard of it. (P,RC4)

Choice talk
The point at which clinicians refer patients for pre-dialysis education is critical.
What it all comes down to is referral time. If they referred them early enough, you've got time to drip-feed the patient, you've got time to talk to the patient at decent intervals about choices and work through steps and maybe bring them round to a home therapy. If they're referring late, you just haven't got that time and that's when they end up on haemo because it's just a default position. (HP,RC3) People attending group sessions mostly viewed them positively and helpful in decision-making, although some found sessions overwhelming suggesting that the method and timing may not be suited to all.
We went early on, quite early on, with this education meeting. I couldn't take any of it in because I found it far too frightening, these things. And it was like, whoosh. And I'm sure you took it in for those minutes but it was terrifying, the thought of what was there and everything (C,RC3) I went on the education session two years ago where they showed us a film about the dialysis. I didn't take any on it in as I didn't believe that I would ever need it (P,RC4) Peer delivered aspects are particularly valuable in gaining knowledge and supporting decision-making.
I think the pre-dialysis education has been excellent, actually. We've been up to the dialysis unit in Personalised education provided that empowers people and supports self-care I think it was delivered in a good way and the staff that delivered it were very good at what they did, but I think the level was quite basic. I think there were some people there of different abilities and it was probably aimed at their level of understanding. So because I already had some knowledge of it anyway, they didn't actually tell me anything that I didn't already know (P,RC2) There are lots of leaflets about the department, if you seek them out. But, you're never given the information. You have to seek it. And I think it would be quite useful. I know every patient is different and everybody's situation is different but there's a lot of information that is very generic. I think that there could be a little brochure that's given to everybody (P, RC3) Patients who had not received adequate information about the range of treatments available to them, or without explanation, were not given certain choices. This often left them with concerns and expectations not fully addressed. In many of these cases, people were not considering home therapies and perceived unitbased haemodialysis as the 'safe' and default option. It was often the one treatment that they recognised and the intervention they perceived to have the most medical support.
[Clinician] didn't really know about me but he was making these varied judgements about me. Decision-making is almost always collaborative. Patients whose families were actively involved in all stages of the decision-making process found it easier to make decisions and were more likely to choose a home therapy.
I liked the sound of doing it at home and [Caregiver] was with me at all the sessions but he kept saying, "Do what you want to do?" but I said, "No, it's got to be a joint decision". He's the one who calls the ambulance. (P,RC2) In all situations, to be fair, there's always been discussions with consultants and nurses that I've got to know and what they think is best, because their opinion is obviously a big opinion. Me and my mum will obviously talk about it to figure out what's best for us. Then me and my mum will probably have a talk with them to try and come to a big decision. (P,RC4) Where a person's partner had not been involved in education a lack of shared information made joint decision-making difficult and sub-optimal decisions were reached. This behaviour was observed particularly with men who rationalised their decisions not to share as a desire to protect their partner. In such cases, home dialysis was not considered. We know that patients will have more of an honest conversation with a nurse than they will with a doctor. They are the constant, so with annual leave clinics, registrars, they change, whereas the nurse will always be the one person who will normally remain consistent. So I think if it's done right, they have a huge role to play in our education process and empowering our patients to become and to choose the right choice, to help guide them to make the right decision (HP,RC2) Few people researched dialysis choices online, and of these, most were discerning about the sources of online information.
I haven't gone to Dr Google because I understand Google. Unless you're 100% accurate on what you're asking, you can get all sorts of random stuff. I feel you've got to go to the expert for the information. (P, RC4)

Options Talk
Despite protocols, there is not a presumption of home therapies as the norm amongst either health professionals, patients or caregivers. We

Decision talk
Unmet social and care issues (eg. housing, welfare benefits, social isolation) prevent home therapies being considered by patients, caregivers and professionals.
A nurse told me about some options. The doctor / consultant told me as well. About four or five people told me. They gave me a piece of paper, went through all this paper about having [dialysis] at home and I said, "No, I'll just come down here. I don't want to frighten my boy. I don't want him seeing me doing all that in here." I had to have a second room for the machine but I haven't got another room (P,RC4) Some of the elderly dialysis patients are lonely; they haven't got family members so a lot of them find it as a social outing three times a week to the dialysis unit. (HP,RC4) Some ERF patients told us that they did not feel unwell and therefore saw no need to make a decision. In such circumstances we often found people received UHD in lieu of a decision.
I haven't heard of a timescale for dialysis. I've been informed that now is the time to be told about the options and to think about it, because if I went for the peritoneal options, there are checks that need to be done. But I still feel fine. Do I need to make that decision now? Can I make that decision when the kidney is on its way? (P,RC2) [The clinician] said "When your GFR gets to this, when you feel like that or your symptoms get worse you'll need dialysis." So it was all stuff that was in the future and I couldn't predict when that would happen so you can sort of brush it to one side and it's not real. (P,RC5) In mainly older people, ingrained deference to clinical authority can result in an unwillingness to participate in shared decisionmaking and a default to UHD. Such deference can be compounded by poor cognition, low health literacy and confidence. While most multi-disciplinary renal teams contain a psychologist, we heard that many people experiencing difficulties did not feel they needed such support, nor did professionals always assess the wider impact of treatment decision-making on people's lives.
They didn't understand why I didn't want dialysis. I was going through it then -it wasn't depression but I did have a personality change. I was going to die and that was it. I think they could do a lot more… There is no counsellor in the department that I know of. I'm not sure I would go to the counsellor but I'm sure there are people who'd like counselling. (P,RC5) This is the only disease I've ever had where there is no future in sight. All there is is a straight line, and that is causing me some mental problems, both in terms of sleeping and in terms of my attitude to where I go because, as I say, I'm a golfer. I've been around the world golfing, been a lucky boy. Now, I can no longer go abroad. I can't go for holidays; I can't go for golf trips. Been married for 35 years but my wife died. I'm now on my own and I see no future. As such, I've found the dialysis scenario very, very restricting. (P,RC3) C=Caregiver, P=Pre-dialysis patient, Cl=Clinician, HP=Other health professional, RC=Renal centre

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Clinicians have high communication skills so that person's preference for information is discussed (e.g. amount and format) Clinicians may have their own agenda eg. may be pressed for time to get through patient cases.

Mix of informal and formal approaches
Bias (overt or unconscious) towards particular therapies in education literature and / or face-to-face sessions Personalised education provided that empowers people and supports self care.
Patient and caregivers suffer from information 'overload' Information delivered consistently, in a range of formats.
Prior knowledge informs heuristic decision-making Consistent peer-delivered information Caregivers and / or family not fully involved, or have their own needs and concerns which impact on decision making.
Equipoise achieved (making the correct range of options available and listing them in a logical sequence and in sufficient clarity so that persons perceive the opportunity to take part in the decision).
Ideas, concerns, and expectations of person (and family/caregivers) not fully addressed

Discussion
This is the first qualitative study to look in depth at the shared decision-making process in this context and with this particular lens. The study is largescale, informed by theory, used a purposive sampling frame and explored multiple perspectives that were co-produced by patients and the public and wide ranging key stakeholders. biases to infect the entire decision-making process. While this is recognised in some decision-making models [13] it is rarely reflected in renal-specific guidance.
Meanwhile, we observe how the presentation of treatment options through education programmes is not always adequate or unbiased. We find that knowledge gaps create barriers to good decision-making, they reduce choice, undermine patient and caregiver autonomy and reduce opportunities for self-determination. Unsurprisingly, we see how such deficiencies create biases towards some treatments and in particular, we find that this mitigates against the take-up of home therapies.
Through identifying factors that are enablers and barriers to the take-up of home therapies (Table 2), our findings suggest a number of changes to service configuration and clinical practice. We set out a 'road-map' for such changes in Table 4 which while applicable primarily to the study setting, contain many universal principles.
These include; kidney 'early-education' for a wider group of renal patients and caregivers; reviewing dialysis education materials and programmes; encouraging patient engagement and activation; improving renal professional's knowledge of treatment options; moving away from a medical model of results; and providing better social and psychological support throughout the process. By reducing misinformation and biases and involving patients and caregivers fully in both care choices and activities, we believe that fewer will default to UHD and more will choose a home therapy. Table 4 Road map for service delivery change to increase uptake of home dialysis

1.
A presumption of home therapies through the clinical pathway adopted by all, including consultants, nurses, other members of renal MDTs, managers and commissioners, and reflected in education.

'Early' education for ERF patients and caregivers.
Talking to people about dialysis too early may lead to unnecessary anxiety, particularly for many patients who will never require dialysis, but "early" education can focus on the basics of kidney disease, the consequences of ERF (even mild/moderate kidney disease), the importance of blood pressure control, smoking cessation, weight loss etc. For some people with clearly progressive kidney disease (e.g. young patients with polycystic kidneys or type 1 diabetes) who need dialysis and transplant information at earlier eGFRs, early education would help them come to terms with treatment and early-identify barriers to home therapy. This would also assist in patient activation and engagement (see below).

3.
Re-design education packages so that patients rely less on unreliable or industry-sponsored resources. This is likely to be a mixture of online material, group discussion (delivered by peers where possible) and one-to-one sessions.
All multi-disciplinary renal team members have a key role in identifying which education package is best suited for each patient, but the content should be standardised regardless of how or who delivers it. Education packages should also fully engage caregivers in recognition of their crucial role in decision-making.

4.
Encourage patient engagement and activation at an early stage rather than wait until the time of decision making and then expecting people to become active in their own care. For example, a two-way patient portal which both delivers education/information updates/patient results/clinic letters to the patient, but also lets the patient upload information which is important to their care e.g. Blood pressure/ weight/key symptoms.

5.
Update knowledge of home therapies to ensure that clinicians and all renal MDT members have the in-depth and up-to-date knowledge needed to discuss options in detail with patients and caregivers.

6.
Move away from purely medical/results focus. Shared-decision making requires a holistic understanding of the patient and caregiverstheir social circumstances, support networks, their values and preferences as well as their medical needs. Clinicians often have a disease focussed model of historytaking so that understanding of the patient is based mainly on blood results and comorbidity, and treatment choices may be based on clinical outcomes (such as survival). An appropriate clinic template, sufficient clinic time and training for multi-disciplinary renal teams would be important in delivering change.

7.
Social and psychological support. A high burden of anxiety (and likely depression) that is unrecognised by clinical teams will impact on decision making. There are tools that clinicians could use to aid in identifying these symptoms (e.g. validated questionnaires); they need to draw upon specialist renal social work and psychologist capacity; and be able to sign-posting to appropriate external support.

Conclusions
People with AKD are not being adequately educated about the most appropriate treatment options for them or the benefits, outcomes or costs of the different options.
Too many are reliant on information or misconceptions gained from sources with varying accuracy and credibility. Healthcare professionals lack the skills to individually-tailor the decision-making process for each person and some are not familiar with using shared-decision models to inform their conversations with patients. Study findings are important as they highlight the critical points in the decision-making processes where changes to practice can potentially bring about better shared decision-making and outcomes with patients. People with AKD need to be better prepared and their preconceived ideas and misconceptions gently challenged. Healthcare professionals need to update their knowledge on contemporary renal therapies in order to provide the best advice and guidance. Healthcare practitioners can use the logic model and road map to clinical change to benchmark and improve their own practice.