The Home First Study: Patient preferences for home dialysis in New Zealand

Abstract

Background Internationally, nephrology departments and health providers are faced with challenges of an increasing number of patients with end stage kidney disease (ESKD) and limited healthcare resources to manage them. Dialysis provision imposes a significant burden on the health budgets of almost all countries and as a response, more recently there has been an international resurgence of interest in home dialysis modalities due to their cost-effectiveness compared to in centre treatments. In New Zealand however, a country with historically high rates of home dialysis, over the last 15 years numbers on home dialysis have been diminishing for reasons that, to date, have been poorly understood or investigated. Home dialysis may offer a number of advantages to the patient including survival, improved quality of life, autonomy, and independence, however it is also well established that there are disadvantages or barriers to patients dialysing at home. To date, we do not know the relative value that patients place on these advantages and disadvantages in making a choice between home dialysis treatments and facility dialysis and how services and providers need to better align to meet the patients’ priorities. Discrete choice experiments (DCEs) provide an ideal way to identify the value patients place on different attributes in their dialysis decision-making. In a DCE, respondents are asked to choose between alternative dialysis treatments (both home peritoneal dialysis and home haemodialysis and facility or hospital haemodialysis) defined by a set of varying attributes. Objectives The objectives of this research are to: understand patient perspectives and priorities through systematic review of current literature to understand the cost-effectiveness of home HD to inform policy decisions through systematic review of current literature through qualitative evaluations, identify key attributes that influence patient decision-making; and evaluate the preferences of patients with ESKD in the decision-making phase prior to commencing dialysis using a DCE to preference for treatment attributes Methods Objective I: A systematic review of patient and caregiver perspectives of home hemodialysis was undertaken of adults with chronic kidney disease and caregivers of both home and hospital dialysis patients who expressed opinion about home HD through MEDLINE, Embase, PsycINFO, CINAHL databases and by manual searchers of publication reference lists (Chapter 3). Objective II: A second systematic review of full economic evaluations was conducted by searching medical and health economic databases using MeSH headings and text words for economic evaluation and haemodialysis. Studies were included if they provided comparative information on the costs, health outcomes and cost-effectiveness ratios of home HD and facility HD (Chapter 4). Objective III: Building from the systematic reviews, and adding to the scarce existing evidence base from NZ, we conducted qualitative semi structured interviews with patients and their caregivers who were in the pre-dialysis decision-making phase or had commenced dialysis within the last twelve months (Chapter 5). We specifically explored gaps identified in the systematic review data of economic considerations of patients (Chapter 6) and the factors that were significant to Maori, the indigenous people of New Zealand who are over-represented in prevalence of RRT but are less likely to uptake home dialysis (Chapter 7). These data were used to assist in the selection of relevant attributes for patients and family members/caregivers for inclusion in the DCE. Objective IV: An initial DCE was developed using data obtained from the work in Chapters 3-7. After pilot testing to obtain parameter estimates and qualitative feedback from participants, an efficient design was used to generate the final DCE. The DCE was conducted with patients in the pre-dialysis or dialysis decision-making phase across two nephrology centres in NZ (Chapter 8). Results Objective I: Systematic review identified 24 studies involving 342 patients (home HD [n=109], hospital HD [n= 97] and pre-dialysis [n=15]) and 121 caregivers. From these studies we identified five themes: vulnerability of dialyzing independently (fear of self-needling; feeling unqualified; anticipating catastrophic complications); fear of being alone (social isolation; medical disconnection); concern of family burden (emotional demands on caregivers; imposing responsibility; family involvement; medicalizing the home); opportunity to thrive (re-establishing a healthy self-identity; gaining control and freedom; strengthening relationships; experiencing improved health; ownership of decision); and appreciating medical responsiveness (attentive monitoring and communication; depending on learning and support; developing readiness; clinician validation). Objective II: Six studies provided full economic evaluations comparing home to facility HD were identified. Two studies compared home nocturnal HD, one home nocturnal and daily home HD, and three compared contemporary home HD to facility HD. Overall these studies suggested that contemporary home HD modalities are less costly and more effective than facility HD. Home HD start-up costs tended to be higher in the short term, but these are offset by cost savings over the longer term Objective III: Semi-structured interviews with adult patients with 43 CKD Stage 4-5D (on dialysis < 1 year) and 9 caregivers, recruited from 3 nephrology centres were conducted. We identified themes related to home dialysis: lacking decisional power; sustaining relationships; reducing lifestyle disruption; gaining confidence in; and maximizing survival. Further analysis of economic influences of decision-making for patients found that patients weighed the flexibility of home dialysis which allowed them to remain employed, against time required for training and out-of-pocket costs. Patients saw the lack of reimbursement of home dialysis costs as unjust and suggested that reimbursement would incentivize home dialysis uptake. Social disadvantage was a barrier to home dialysis as patients’ housing was often unsuitable; they could not afford the additional treatment costs, for example home modification that was associated with home dialysis. Home hemodialysis was considered to have the highest out-of-pocket costs and was sometimes avoided for this reason. The Māori concepts of whakamā (disempowerment and embarrassment) and whakamana (sense of self-esteem and self-determination) provided an over-arching framework for interpreting the themes identified: disempowered by delayed CKD diagnosis; confronting the stigma of kidney disease; developing and sustaining relationships to support treatment decision-making; and maintaining cultural identity. Objective IV: Home-based therapies were preferred when a longer survival and greater improvement in well-being was expected, treatment schedules were more flexible, out-of-pocket costs were lower, and unlimited nursing support was available. Transportation reimbursement influenced preferences of remote patients. Longer training times increased patient preferences for home dialysis, and patients were more likely to choose home hemodialysis when nocturnal dialysis was available. Identifying as Pacific Island ethnicity was associated with a lower preference for home-based dialysis. Identifying as NZ Māori was associated with a higher preference for peritoneal dialysis. Older age (> 65 years) was associated with a lower preference for home based dialysis. Annual household income below $60,000 was associated with a lower preference for home hemodialysis. Patients were willing to accept higher out of pocket costs for home-based therapy to achieve more intensive nursing support. Conclusions In adult pre-dialysis patients making choice about dialysis modalities several characteristics of dialysis treatment are associated with patient preferences for home-based dialysis care including longer survival, expected improvement in well-being, more flexibility, lower out-of-pocket costs, longer training times and unlimited nursing support. Patients were willing to trade-off increased out-of-pocket costs for home-based therapy to achieve more intense nursing support. Our findings therefore lead us to believe patients are more likely to choose a home dialysis option if they are offered an increased level of nursing support.