The ASK study: Improving AccesS to living-donor Kidney transplantation
Research type
Research Study
Full title
The development of a complex intervention to improve AccesS to living-donor Kidney transplantation: the ASK trial
IRAS ID
269321
Contact name
Pippa Bailey
Contact email
Sponsor organisation
The University of Bristol
Duration of Study in the UK
0 years, 9 months, 5 days
Research summary
Summary of Research
A living-donor kidney transplant (LDKT) is the best treatment in terms of life-expectancy for most people with kidney failure. The UK’s LDKT activity falls behind many other countries. Certain individuals with kidney disease in the UK are disadvantaged in accessing a LDKT: the most socioeconomically deprived people with kidney disease are 60% less likely to receive a LDKT than the least deprived.
In this research study the research team will work with people with kidney disease, their family members, and healthcare professionals to develop an intervention that increases the proportion of eligible kidney patients that receive a LDKT. The intervention will support individuals, particularly those currently disadvantaged, to overcome barriers to transplantation that were identified in previous research.
The research team intend to combine three approaches used in Norway, the Netherlands, and the USA, and adapt them for use in the UK. The approaches used outside the UK comprise: nephrologist donor recruitment, home visits to family members, and the use of patient advocates.Phase 1A:
The research will start with interviews with three groups of people:
i) people with kidney disease
ii) the family and friends of people with kidney disease, including people who have donated their kidneys, and
iii) healthcare professionals who work in renal medicine and transplantation.The research team will investigate the views of the participants on the proposed interventions, and explore how the interventions might need to be adapted for use in the UK and tailored for specific groups.
Phase 1B:
The research team will then work with small groups of key stakeholders (people with kidney disease, their donors, family and friends, researchers, practitioners and commissioners) to produce together the intervention resources and materials. The drafted intervention resources will undergo final review by an advisory committee before being tested for impact in a subsequent clinical trial (to be subject of a future application).Summary of Results
A living-donor kidney transplant (LDKT) is one of the best treatments for kidney failure. The UK’s LDKT activity falls behind that of many other countries. There is evidence that some people in the UK are disadvantaged and less likely to have a LDKT compared to other people. We aimed to develop an intervention (package of care) to support eligible individuals to access a LDKT. The intervention was designed to support those who are socioeconomically-deprived and currently disadvantaged. We identified three existing interventions that target barriers that affect socioeconomically disadvantaged individuals: a) the Norway model (healthcare practitioners contact patients’ family with information about kidney donation), b) a home education model, and c) a transplant candidate advocate model. We undertook intervention development using a technique called the Person-Based Approach (PBA). We performed in-depth interviews with people with advanced kidney disease (n = 13), their family members (n = 4), and renal and transplant healthcare practitioners (n = 15), analysed using thematic analysis. We investigated participant views on each proposed intervention component. We drafted intervention resources and revised these in light of comments from qualitative ‘think-aloud’ interviews. Four general themes were identified: i) Perceived cultural and societal norms; ii) Influence of family on decision-making; iii) Resource limitation, and iv) Evidence of effectiveness. For each intervention discussed, we identified three themes: for the Norway model: i) Overcoming communication barriers and assumptions; ii) Request from an official third party, and iii) Risk of coercion; for the home education model: i) Intragroup dynamics; ii) Avoidance of hospital, and iii) Burdens on participants; and for the transplant candidate advocates model: i) Vested interest of advocates; ii) Time commitment, and iii) Risk of misinformation. We used these results to develop a multicomponent intervention which comprises components from existing interventions that have been adapted to increase acceptability and engagement in a UK population. This is currently being evaluated in a feasibility randomised controlled trial.REC name
West Midlands - South Birmingham Research Ethics Committee
REC reference
19/WM/0320
Date of REC Opinion
25 Oct 2019
REC opinion
Favourable Opinion