If you can't comply with dialysis, how do you expect me to trust you with transplantation? Australian nephrologists' views on indigenous Australians' 'non-compliance' and their suitability for kidney transplantation

'Compliance' as a predictor of post-transplantation risk

The use of compliance as a predictor of risk may particularly disadvantage Indigenous patients. Previous research suggests that a nephrologist's perception of a patient's 'compliance' with his or her dialysis regimen strongly influences referral. An Australian survey using hypothetical patient vignettes revealed that 'compliance' (not defined in the vignettes) was a highly significant independent predictor of referral - second only to advanced age [11]. The importance of perceived compliance was highlighted in a review of Australian selection guidelines; 'non-compliance' - though poorly defined - is a contraindication, despite a lack of cited evidence, in seven of eight guidelines examined [9]. These studies suggest that nephrologists accord high priority to compliance and commonly see it as a prerequisite for referral.

Perceived non-compliance with pre-transplant dialysis may be seen as a predictor of post-transplant non-compliance. However, the treatment regimens differ markedly. Haemodialysis demands thrice-weekly attendance, strict fluid and dietary control and multiple medications. The post-transplant regimen, by contrast, while requiring strict adherence to medications, has fewer fluid and dietary restrictions and, apart from the immediate post-transplant period, few attendances. While non-compliance with immunosuppressive medications is a recognised cause of transplant failure, any association between pre- and post-transplant non-compliance remains unclear [12–14].

The concept of compliance has been criticised in both the social and medical literature [15, 16] in particular because it narrows the perspective on a complex situation [17, 18]. Compliance focuses on particular patient behaviours, while often overlooking the influences of systemic and social factors. Behaviours interpreted as poor compliance might stem from factors associated with low socio-economic status and poorly-resourced medical services [19]. The specific social and economic circumstances of many Indigenous Australians might make it difficult for them to maintain the demanding dialysis regimen. Uncertainty about transplant outcomes in this population, together with the chronic organ scarcity, might mean that Indigenous patients are regarded, in general, as too high-risk.

Exploring nephrologists' views about compliance and suitability

We explored the views of Australian nephrologists about compliance and transplant suitability - both generally and specifically relating to Indigenous patients. This paper draws on in-depth interviews conducted as part of a larger program investigating the barriers facing Indigenous ESKD patients in obtaining transplants. Thematic analysis was undertaken to investigate how and why compliance is factored into decision-making, and the implications for Indigenous patients' obtaining transplants.

Participants

Eight large renal units and their associated dialysis service centres, in five State/Territory jurisdictions, were included because they treat the overwhelming majority of Indigenous Australian patients with ESKD. The 19 nephrologists, both general nephrology and transplant physicians, were purposively sampled to include the views of key decision-makers at each site. Relevant nephrologists were invited to attend information sessions at each site and were subsequently invited to participate. There were no Indigenous nephrologists in Australia at the time the IMPAKT study was undertaken so hence all interviewees were non-Indigenous.

Analysis

The data were analysed through content analysis of the transcribed interviews using QSR NVivo 7 (Doncaster, Australia). The major thematic groups were divided between two investigators who coded all interviews.

Participant demographics were collected via self-reporting. Descriptive statistics were generated using SPSS 15.0 for Windows (Chicago, Illinois).

Ethical approval

The study was approved by 14 relevant jurisdictional ethics committees, including six all- Indigenous committees. Site-based reference groups operated during the course of the research at each of the nine hospital sites.

Poor definition and assessment of compliance

Asked to explain their understanding of 'patient compliance', most specialists either gave a functional definition of compliance or a description of how they assess compliance. Essentially most referred to a variety of patient behaviours, attitudes and characteristics as markers of compliance, including vaguely defined expectations that patients engage with prescribed treatments and avoid unhealthy lifestyle behaviours. There was no evidence of either a formal definition or a shared understanding of patient compliance among specialists.

Moreover, many were quick to point out flaws in their own methods of assessing compliance which were criticised by several as being subjective, non-quantitative and involving more 'gut-feeling' [1–4] than measurement. As one explained: I think it's a subjective assessment . . . which may or may not be accurate. [5-004]

Nephrologists agreed that compliance was difficult to assess. Although some specialists cited possible assessment methods, most spoke of it in only general terms, if at all. Methods mentioned included clinic attendance records, blood test results, checking medication packs, patient self-reporting, family reporting, prescribing medications known to slow the heart rate and checking the pulse rate, and intuition. However, none were reported as being used consistently within or across units.

Uncertainty whether dialysis compliance predicts post-transplant compliance

Ambivalence towards the relevance of compliance led to markedly divergent views- both between specialists and within interviews - on the predictive validity of estimations of compliance to identify high-risk candidates.

Several noted that compliance does not translate from dialysis to post-transplant settings because of dissimilarities between the two treatment contexts. The difficulty predicting uptake and maintenance of post-transplant treatments is a source of great concern as explained by one respondent: [It] is something that really worries us immensely . . . I am totally unable to predict who may be compliant with [post-transplant] medication and who won't be. I've had extraordinary lack of success with predicting that. [1–11]

Non-compliance was frequently identified as a 'big concern' [1, 2] and a key contraindication to transplantation. Nevertheless, the majority said that they had, indeed, recommended non-compliant patients for transplant. Some nephrologists provided detailed accounts of patients whose 'compliance' status changed after transplantation - in both directions. Several suggested that non-compliant patients pose too much of a risk to receive such a scarce resource. However, even among these specialists there was virtually unanimous agreement that pre-transplant compliance was a poor predictor of post-transplant behaviour and outcomes. For example, although saying to one patient: If you can't comply with dialysis, how do you expect me to trust you to comply with transplantation? I have to give [transplants] to patients who are going to take their pills because this is what you have to do. [1] the nephrologist later went on to say: I believe that it's very difficult to say if someone's non-compliant on dialysis that they're going to be non-compliant with transplantation. I think the correlation between the two is very difficult and there have been a number of patients whom I've thought over the years would never be compliant, who have been absolutely fine when they're transplanted, so I think that's incredibly difficult to assess. [1]

Despite obvious frustration, the chief concern of many - particularly in the context of extreme organ scarcity - was forecasting whether or not a patient would maintain the post-transplant regimen. One commented with some resignation: Attitude to compliance is a major factor and we regard that very closely. Because of the fact that there will never be enough kidneys, if someone doesn't take their medication, that stops someone else, so that's a factor. And I think the hardest thing is how to determine that. [1]

Divergent approaches to equitable distribution of scarce resources

The scarcity of donor kidneys was a pervasive theme. Almost every nephrologist identified it as a pressure in decision-making. It clearly shaped many referral practices. Nevertheless there were fundamental differences in nephrologists' approaches to achieving an equitable distribution of kidneys.

Severe organ scarcity creates strong tension between clinician's responsibilities to their individual patient and their perceived (collective) responsibility to manage organ distribution wisely. As one explained: Not only are we in a position to try and make [patients] better . . . I think we're also paid to safeguard resources, you know, society's resources . . . And although we're trying to make life better for this person, I think we could be judged poorly if we, we squandered something you know . . . I think it's our job and our duty to make sure it's used wisely. [5-004] Another described the maximising the benefit of the resource, rather than to equity of patient access: Well I think the key barrier is organ availability and the fact that we're then forced to rank people based on their suitability and potential benefit. Because we, in our unit, have taken up that challenge and not said, "It's too hard", and I think you can say ",It's too hard", and just put everyone on the list. But I think that's probably not what society really needs [us] to do. [1–10] Another specialist explained that his ultimate responsibility was to the donor: [Transplant] isn't a right, it's a gift, and the people giving the kidney have a right for it not to be squandered. [5-004]

Conversely, a handful of specialists did not regard maximizing the utility of donated organs as the chief priority. For them, the benefit to the individual was paramount: We tend to transplant the Aboriginal patients in the hope that they will be one of the group that does well. Now, you could argue, that that's not very evidence-based, nor is it particularly utilitarian; but I'm not one of those physicians who is bound by evidence, by cost utility . . . I think [Aboriginal patients] deserve to be transplanted, because for those in whom there has been successful transplantation... it's probably a greater advantage for them than it is for the non-Indigenous, because the benefits in terms of cultural and society are greater. They can go back where they came from. [1–14]

These differences suggest that a 'riskier' candidate's likelihood of being referred - whether such risk is based on medical, behavioural or circumstantial factors - could depend strongly on where and by whom the patient was being treated.

Indigenous non-compliance linked to poor transplant outcomes

Indigenous patients were commonly categorised as high-risk candidates. They were also thought to have worse transplant outcomes than non-Indigenous recipients and this belief was frequently associated with the view that such patients had difficulties complying with treatment. As one nephrologist said: 'I think Indigenous patients are over-represented in our non-compliant patients who lose their kidneys from non-compliance.' [1, 2]

The view that Indigenous transplant outcomes were relatively poor impacted on whether and how patients were referred through a heightened sense of caution increased scrutiny or "selectivity" of potential candidates, as reflected here: I think within the unit, there is a gradual acceptance that a more cautious approach to transplantation has met with better success than the previous [approach] where ... everybody got listed because it was thought unfair to delay Aboriginals. But the outcomes were very unsatisfactory. So I think we are rewarded that a more cautious and selective approach has value. [1–10]

Concerns about poor outcomes also extended to anxieties about safety in transplanting Indigenous recipients - whether or not transplantation might be considered harmful. As one respondent explained: Well, that (recent data on post-transplant survival for Indigenous patients) reinforced my pre-existing impression that there is a large number of patients, or a significant proportion of patients from remote areas, who are actually disadvantaged, who actually die by being transplanted.[5-001]

Poor outcomes were most frequently ascribed to non-compliance. As one respondent stated: I think the main reason why - even if we think Indigenous patients are suitable - they don't get on the list, is they're at risk of compliance problems. [1] Asked about outcomes, he said: I believe they would be worse. I think it's compliance. I think it's nearly always compliance . . . most Indigenous patients' transplants in our unit, and I will say most, ended up with organ loss from (non) compliance. They're a small proportion, so you remember. [1]

Conflation of indigenous non-compliance with "culture"

Dialysis non-compliance was often conflated with perceived social and cultural factors. Statements about Indigenous patients being non-compliant and high-risk candidates were frequently enmeshed larger, more generalised accounts of their social difficulties and perceived cultural particularities.

Factors repeatedly mentioned included living in a remote location, low socio-economic status, alcohol abuse and low levels of education. The comments of one nephrologist illustrate how situational, cultural and social factors are perceived to contribute: I think it's partly belief system - whether or not you believe the medication is going to do anything for you or not. Partly it's their tolerability. If medication can cause a consistent adverse effect which you don't like, you're not going to take it. I think it's partly the cost of the medications. If you have to pay, even if you're on a health care card, you have to pay a dispensing fee of $3 or whatever it is. And unfortunately, I think the Indigenous patients are poorer. [1, 2] Another specialist alluded to the challenges of remote living: I think that compliance is more difficult for people who live remotely. It's just more difficult for them and that doesn't necessarily reflect [on] the individual, it's just it takes a greater level of commitment to be able to comply in that environment. [1–8]

Cultural issues were also identified as reducing the likelihood of maintaining treatment regimens, including different approaches to time, life priorities, illness, action and responsibility. For example, different approaches to time and to life priorities were thought to factor largely in missed dialysis and appointments. As one nephrologist said: Aboriginal people don't tend to think too much about tomorrow or next week, they tend to be "now" people. I think therefore it makes it more difficult for them sometimes to understand why they should be taking a tablet for tomorrow. [1–3] Another, noting the large number of funerals which people attend, said: so they don't turn up [for dialysis]. Someone's died in their family - they go. Some of these people go to funerals frequently because they've got such a big family - so they don't turn up. And we just accept that it's part of their culture. [1] The comment inadvertently also highlights the level of illness and loss experienced by Indigenous patients and their families.

The way in which non-compliance and social and cultural circumstances were conflated in the nephrologists' accounts revealed a common pattern of thinking whereby individuals would be pre-judged as high-risk, with accordingly reduced chances of referral. As one nephrologist observed: I think the perception of illness amongst the Aboriginal people is very, very different, because the perception of time is different and the perception of consequence, of action, is also different - or inaction. I think that really does cloud the whole issue of transplanting the Aboriginal patient and ensuring compliance . . . it would be put forward as a reason not to transplant them by some. [1–14]