Researchers have carried out a systematic review and thematic synthesis of qualitative studies to ascertain the views of patients and carers in decision making regarding treatment for chronic kidney disease, and to determine which factors influence those decisions.
They identified 18 studies that reported the experiences of 375 patients and 87 carers. Of the studies, 14 focused on preferences for dialysis modality, three on transplantation, and one on palliative management. Four major themes were identified as being central to treatment choices:
1. Confronting mortality (choosing life or death, being a burden, living in limbo)
2. Lack of choice (medical decision, lack of information, constraints on resources)
3. Gaining knowledge of options (peer influence, timing of information)
4. Weighing alternatives (maintaining lifestyle, family influences, maintaining the status quo).
The researchers conclude from these findings that “the requirements of many patients and their carers are not being met. They note that “the problematic timing of information about treatment options and synchronous creation of vascular access may predetermine the use of haemodialysis and limit choice of other treatments, including palliative care. Patients have a strong preference for the status quo and are reluctant to change treatments, which may help explain why patients often continue with their initial therapy.”