Cultural adaptation of a digital health platform for patients with chronic kidney disease from a South Asian background

Supervisors

• Dr Matthew Graham-Brown (mgb23@le.ac.uk)
• Dr Courtney Lightfoot
• Dr Rupert Major

Project is available to UK applicants only.

Project description

Chronic kidney disease (CKD) is a major public health emergency. 7 million people in the UK have CKD, numbers are expected to increase over the next 10 years, with a major impact on the UK health economy (1). The majority of patients with CKD are looked after in primary care, with no access to specialist secondary care renal services and public awareness of CKD and its health implications are low (2,3). Patients with CKD have an increased risk of cardiovascular disease, reduced quality of life, functional impairment and high symptom burden (4). The ability to effectively self-manage aspects of health was highlighted as a key priority for patients living with chronic health conditions in the NHS Long Term Plan for (5) and this is reflected in NICE guidelines for CKD (6). We co-developed and tested ‘My Kidneys and Me’, a digital health platform that has been shown to improve ‘patient activation’ (disease-specific knowledge, skills and confidence to engage to effectively self-management), kidney-related health knowledge and health related behaviours (7,8,9). The platform needs to be revised to be more accessible for high risk groups of patients, to improve engagement. This PhD project will look specifically at the cultural adaptations that are needed to improve access and engagement with the platform for patients with CKD from a South Asian background who experience poorer CKD-related and CV outcomes and therefore have greatest need of these types of resource.

Project plan

This project will take a mixed-methods approach and the student will receive appropriate training and support from supervisors and experienced members of the Kidney lifestyle team.

Work package 1

The student will be supported to complete a scoping review to look at cultural adaptations that have been made to complex interventions for patients with kidney disease. This will not be limited to the South Asian population nor to digital interventions.

Work package 2

The student will be supported to recruit patients of a South Asian background and their family/caregivers will be recruited to the LINK-UP study (a platform qualitative study for patients with kidney disease, family/care givers of patients with kidney, clinicians or stakeholders involved in the care of patients with kidney disease – submitted for ethical approval). We have extensive experience recruiting patients with CKD of South Asian ethnicity to clinical research studies and have worked with the Centre for Ethnic Health Research to establish relevant networks and PPI activities to support recruitment. We will take an ethnographic approach to data collection, using a range of qualitative methodologies, (focus groups, one-to-one interviews and think aloud interviews) (10), with data collection and analysis undertaken aligned to an appropriate cultural adaptation framework (11). Data will be recorded, transcribed and analysed with an appropriate technique (e.g. thematic, content, narrative, framework analyses) to draw establish specific unmet needs of these patients and to identify how the current content of the platform needs to be revised for patients with CKD from a South Asian Background Work package 3: Working with the IMPACT (Innovative Management, Prevention And Care for long Term conditions) and digital health teams in the Leicester Diabetes Centre, and based on the findings in work package 2 the student will help to develop appropriate content and oversee relevant revision to the My Kidneys and Me platform. The student will then complete a feasibility evaluation in 10-20 patients from a South Asian background who will be taking part in a wider implementation trial of the My Kidneys and Me platform in primary care that is being run as part of the Kidney Lifestyle Research Program. The student will look specifically at numbers of patients who access the platform, time spent on the platform and explore which parts of the platform are used most/least. They will conduct further speaking aloud interviews with the same group of patients from work package 2 to define the extent to which the adaptations to the platform have addressed the needs of patients with CKD from a South Asian background.

References

• Kidney disease: A UK public health emergency the health economics of kidney disease to 2023 June 2023.
• Greer RC, Crews DC, Boulware LE. Challenges perceived by primary care providers to educating patients about chronic kidney disease. Journal of renal care. 2012;38(4):174-81.
• Tuot DS, Wong KK, Velasquez A, Crews DC, Zonderman AB, Evans MK, et al. CKD Awareness in the General Population: Performance of CKD-Specific Questions. Kidney Medicine. 2019;1(2):43-50.
• Kovesdy CP. Epidemiology of chronic kidney disease: an update 2022. Kidney Int Suppl (2011). 2022;12(1):7-11.
• NHS England. The NHS Long Term Plan. 2019.
• National Institute for Health and Care Excellence (NICE). Chronic kidney disease: assessment and management. 2021.
• Lightfoot CJ, Wilkinson TJ, Hadjiconstantinou M, Graham-Brown M, Barratt J, Brough C, et al. The Codevelopment of "My Kidneys and Me": A Digital Self-management Program for People With Chronic Kidney Disease. Journal of medical Internet research. 2022;24(11):e39657.
• Lightfoot CJ, Wilkinson TJ, Vadaszy N, Graham-Brown MPM, Davies MJ, Yates T, et al. Improving self-management behaviour through a digital lifestyle intervention: An internal pilot study. Journal of renal care. 2024.
• Courtney J Lightfoot, Thomas J Wilkinson, Gurneet Sohansoha, Clare L Gillies, Noemi Vadaszy, Ella Ford, Melanie J Davies, Thomas Yates, Alice C Smith, Matthew PM Graham-Brown5, on behalf of SMILE-K collaborators. Effect of a novel digital health education intervention - My Kidneys and Me - on patient activation and self-management in patients with chronic kidney disease: a multicentre parallel-group randomised control trial. Under review Digital Medicine July 2024
• Hamilton AB, Finley EP. Qualitative methods in implementation research: An introduction. Psychiatry Res. 2019 Oct;280:112516. doi: 10.1016/j.psychres.2019.112516. Epub 2019 Aug 10. PMID: 31437661; PMCID: PMC7023962.
• Day S, Laver K, Jeon YH, Radford K, Low LF. Frameworks for cultural adaptation of psychosocial interventions: A systematic review with narrative synthesis. Dementia (London). 2023 Nov;22(8):1921-1949. doi: 10.1177/14713012231192360. Epub 2023 Jul 28. PMID: 37515347; PMCID: PMC10644683.