Patient and caregiver preferences for home dialysis—the home first study: a protocol for qualitative interviews and discrete choice experiments

Abstract

IIntroduction The number of patients requiring dialysis continues to increase worldwide imposing a substantial social and economic burden on patients, their families and healthcare systems. Compared with facility-based dialysis, dialysis performed by the patient at home is associated with higher quality of life, freedom, survival and reduced healthcare costs. International guidelines recommend suitable patients are offered a choice of dialysis modality, including home-based dialysis. Predialysis education and offering patients choice increase home dialysis uptake, yet the factors that patients and families are willing to trade off in making decisions about dialysis location are not well understood. The Home First study will explore patients’ and caregivers’ beliefs, attitudes and preferences regarding dialysis education and decision-making with regards to dialysis options; to identify key attributes which influence their decision-making, and to quantify the relative value of these attributes.

Methods and analysis This study will use a mixed-methods approach to describe patient and caregiver preferences and views about the factors that influence their choice of home or facility-based dialysis. Face-to-face, semistructured interviews will be conducted with 30–40 patients and 10–15 caregivers. Thematic analysis of interview transcripts will be conducted. Additional to providing information on the perspectives and experiences of patients and caregivers, these analyses will also inform the design of discrete choice experiments (DCEs). We will undertake DCEs with approximately 150 patients and 150 caregivers to quantify preferences for home and facility dialysis.

Ethics and dissemination The Hawke's Bay, Counties Manukau, and Capital Coast District Health Board Research Ethics Committees approved the study. Findings will be presented in national/international conferences and peer-reviewed journals. Dissemination to patients will take the form of presentations, newsletters and reports to support and community groups. Reports will be disseminated to funders and participating renal units and to the New Zealand Ministry of Health.