Decision making about Living Kidney Donation - DEAL KD study

• Research type

  Research Study

• Full title

  Facilitators and barriers to living kidney donation within BAME communities: establishing the need for a decision support intervention.

• IRAS ID

  281979

• Contact name

  Sunil Kumar Daga

• Contact email

  sunildaga@nhs.net

• Sponsor organisation

  Leeds Teaching Hospitals Trust

• Duration of Study in the UK

  2 years, 0 months, 0 days

• Research summary

  Living Donor Kidney Transplantation (LDKT) is the best treatment for people with advanced kidney disease (AKD). LDKT means people can plan their operation often without the need for dialysis, there are better clinical outcomes and longer life expectancy compared to deceased donation. People with AKD who have had a LDKT report a better quality of life and feel healthier than people on dialysis. Despite these benefits, it is the least common treatment choice. Only 30-35% of all kidney transplantation is from a living (rather than deceased) donor and this reduces to 7% in the Black, Asian and Minority Ethnic (BAME) communities.

  There are several reasons that explain why people may be more likely to have a LDKT, including where they live, income, gender and ethnicity. People with EKD often find it difficult to start conversations with others about becoming a donor. This may be due to a lack of knowledge about the risks and benefits of living donation, risk perception, feelings of guilt, and/or mistrust of the healthcare system. People from ethnic minorities are particularly inclined to ‘watch and wait’ for a donor rather than actively engage in conversations and they also need clarification about religious stances on donation.

  Providing good quality patient information can encourage LDKT. Our research will explore people’s experiences around decision making and communication about living kidney donation to inform the development of a patient decision aid to improve living kidney donation rates with a particular focus on BAME communities. This will be carried out by:
  1. Asking people with kidney disease about their experiences of choosing LKD
  2. Asking and observing how staff talk to people about living kidney donation to identify the difficulties in talking to family and friends about living donation
  3. Develop a decision aid to help people talk to their family and friends about living donation

• REC name

  North West - Preston Research Ethics Committee

• REC reference

  21/NW/0095

• Date of REC Opinion

  4 Jun 2021

• REC opinion

  Further Information Favourable Opinion