Which factors determine treatment choices in patients with advanced kidney failure: Co-productive study with patients and key stakeholders
End of project summary
Main Messages
We undertook a two year mixed-methods co-productive study to learn more about the reasons why many people with advanced kidney disease continue to choose a hospital-based kidney therapy when home-based therapy offers better survival, better quality of life and delivers better public value.
The study had five strands that were all supported by patient and public involvement:
- Review of pre-dialysis patient education materials and processes.
- Analysis of clinical audit data
- Cost calculation of different dialysis options
- Qualitative interviews with patients and carers, focus group interviews with professionals
- Bringing the multiple strands together to see the big picture and develop a new more sustainable service model
We found that:
- Hospital-based dialysis has become the norm in Wales.
- Education programmes varied across Wales and there was a lack of focus on home therapies in many of the paper based information leaflets.
- There was variation in how people were introduced to and offered dialysis options
- Health care professionals do not always feel they have the tools to support people to choose home dialysis.
- Clinical nurse specialists have a key role in influencing patient decisions.
- Hospital-based dialysis was associated with higher costs.
- People with kidney disease and family members had various unmet social care needs and there were inconsistencies in why home therapies were excluded as an option for some patients.
Recommendations include service redesign and/or reconfiguration to better support patients to self-manage their treatment. We also recommended more integrated working with social care services, and more tailored education packages for all family members. Future research needs to include reviews of audit data including longitudinal monitoring of the impact of any intervention.