“I saw people on home HD and they looked better.” Patient and carer preferences for treatment of end stage kidney disease: a synthesis of qualitative studies

  • Rachael Morton, The University of Sydney, Australia
  • Dr Allison Tong, Centre for Kidney Research, Children's Hospital Westmead, Australia
  • Dr Kirsten Howard, The University of Sydney, Australia
  • Dr Paul Snelling, Sydney South West Area Health Service, Australia
  • Dr Angela Webster, The University of Sydney, Australia

    • Objectives: To describe preferences for treatment of end stage kidney disease from the patient and carer’s perspective.
    Methods: A systematic review of qualitative studies regarding decision making and choice for dialysis, pre-emptive transplantation or palliative care was undertaken. A comprehensive literature search of publications using qualitative methods (focus groups, interviews, or case studies) was conducted in Medline, PsychINFO, CINAHL, EMBASE and Social work abstracts from inception to October 2008. Synthesis involved line-by-line coding of the findings of the primary studies and development of descriptive and analytical themes.
    Results: 12 studies that reported the experience of 273 patients and 62 carers were included. 9 studies focused on preferences for dialysis modality, 2 studies on transplantation and 1 study on palliative management. Five major themes were identified as being central to treatment choices: (1) confidence in care; (expert management; not being abandoned); (2) seeking further information (influence of family members and other patients, needing time to consider options); (3) personalising the choice; (weighing alternatives to fit with lifestyle; managing logistics, transport, social/family roles; (4) other’s decision (no choice, treatment based on medical factors, doctor’s preference, available space); (5) living with the decision (anticipating the future, support of the family, relationships with staff, relationship with carer).
    Conclusions: Patients and their carers are interested in knowing about their treatment options, even if they are happy for the choice to be made for them. The perceived impact of the treatment on the patient/family life appeared more influential than the medical effectiveness of the treatment.