The study offered new insights into areas of treatment burden which patients with ESKD and nephrologists felt should be prioritised for discussion in a clinical encounter. In general, the issues raised were broadly similar with some differences in the ranking of priorities between patient and physician groups. Patients felt most of their treatment burden arose from health system issues, and they desired better communication and coordination across medical disciplines, allied health as well as administration within the hospital system and externally with other care providers. Physicians appreciated that patients did not want to frequent the hospital so often for appointments and investigations. Overall, patients with ESKD with high symptom and treatment burden found the healthcare system challenging to navigate and this was a major source of frustration and fatigue. Patients and physicians derived feasible solutions which require working with health service management to streamline care.

Physicians and patients also agreed that the psychosocial burden of treatment was an important area which is consistent with the qualitative CKD literature.19 There is a shift towards patient-centred research, and the Standardised Outcomes in Nephrology-CKD initiative highlighted in their work that research should focus on patient-centric outcomes.20 Patients in their study discussed how depression, dialysis-free time, impact on family and friends were important outcome measures and indicators of psychosocial burden which should be included in research. Similar psychosocial issues were popular discussion points in our study’s patient with ESKD group.

Patients in our study highlighted the need for empathic and honest communication, information and education, which was not raised in the physician group. It may be that physicians already felt they spend a lot of time providing information and education within consultations, and that the department had invested in patient education resources. A recent UK qualitative study found that patients were not given adequate information on how to manage the condition, and the kidney care team perceived this to be related to health literacy.10 Indeed, health literacy may be a factor in their ability to retain information, but patients’ fatigue, cognition dysfunction associated with CKD, ageing and the complex health-related tasks for self-management cannot be overlooked. Many patients and families are also overwhelmed emotionally as they grapple with prognosis and undertake future planning. Patients in our study stated they needed their physicians to be patient, understanding and reiterate information at different times, through different people and formats. Formal and informal support groups and information evenings could be a way of normalising patients’ experiences and developing alternate support systems. Though there are local and national CKD support groups, many patients in our NGT groups were not aware of their existence suggesting more needs to be done to actively promote them.

The behavioural and lifestyle changes required in CKD treatment were also highlighted as an area of treatment burden. This corroborates with existing literature stating that dietary changes and fluid restrictions significantly impact the lives of patients with CKD and caregivers. A systematic review of qualitative studies identified that patients’ attitudes around dietary changes depended on its impact on relationships, their experience with navigating change, difficulties fighting temptation, need to optimise health and empowerment.21 The review reported that patients found dietary and fluid restrictions disorienting and intense. Patients wanted education, collaboration and strategies to stay motivated to optimise their health with the least restriction on quality of life. Further, patients in our study wanted pragmatic advice and close collaboration with dietitians on dietary recommendations to maximise long-term adherence.

Physicians mentioned medications as an important treatment burden area. Patients’ medication-related concerns focused on pill burden and inconvenience of getting prescriptions with lack of streamlined processes. Somewhat surprisingly, patients did not mention dialysis as a significant source of treatment burden despite it being such a large part of their treatment workload. This is consistent with other ESKD treatment burden studies.10 12 It may be that patients are more willing to accept dialysis-related treatment burdens as they perceive it to be life-saving.

While transplantation was raised as a possible treatment burden priority, patients and physicians did not rank this in the top five priorities. It is possible that patients were satisfied with existing patient education processes, locally and at the transplant centre. However, from a physicians’ perspective, pre-transplant investigation updates (eg, annual echocardiogram, antibody and virologic screening) may be a burden when assessing suitability for transplant. Additionally, there were concerns that patients may not be fully cognisant of the nuances of post-transplant care including monitoring for rejection, drug levels and interactions, preventing opportunistic infections and cancer screening.

Our study findings generally concur with the literature, however there are some notable differences. A systematic review of qualitative studies in the CKD population included 260 studies from 30 countries with 5115 patients and 1071 carers.22 Similar themes to our study did emerge such as difficulties with self-care, navigating healthcare systems, managing information and burden on social supports. Unlike our study however, the review mainly emphasised the impact of patients’ socioeconomic status (income level, insurance status and locality) on their ability to pay and access healthcare including dialysis. Financial burden was of critical concern for patients with CKD particularly in countries without a universal healthcare system. In contrast, patients with ESKD in our study rated financial burdens as their fifth priority as the universal healthcare system in Australia generally delivers affordable and equitable healthcare.32 Of note, the included studies in the systematic review had variable quality of reporting, heterogeneity in the research question and study methodologies.22

This study offers novel insights into the most burdensome aspects of the patients with adult ESKD’s high treatment workload and an insight into physician’s awareness of those burdens. A strength of this study was that the patients with ESKD’s perspectives and priorities were independently identified and then compared with specialist physicians, mostly from the same treatment centre. Using NGT ensured the preferences and perspectives of individual participants were valued equally. Unlike other studies, our methodology allowed participants to prioritise areas of treatment burden. This study also offered patients the opportunity to present their own solutions to the treatment burden topics raised. Prioritisation of treatment burden themes as well as focus on solutions should give policymakers and hospital management impetus and strategies for improving their model of care.

The data generated in this study reflected the experience of patients in one centre and there may be unique or dissimilar treatment burden priorities experienced by patients with a different demographic profile or in other treatment centres. The study may have had selection bias for medically stable and vocal study participants. It is probable that GCHHS staff were more inclined to recommend patients for the study if they could articulate themselves well and had the willingness to participate. Conversely, those with (1) cognitive impairment, (2) speech and language difficulties (eg, non-English speaking background, patients who had stroke), (3) significant medical and treatment burdens (eg, hospital in-patients, palliative care patients) and (4) difficult social situations were less likely to be represented in this volunteer participant population. Younger patients were under-represented; however, this was not surprising as patients with ESKD under 60 years of age are more likely to have undergone renal transplants. Overall, however, our findings were generally aligned with previous results of studies that evaluated treatment burden in patients with CKD.