Kidney Inequalities: Needs, Data, Experiences, Response (KINDER)
Research type
Research Study
Full title
Understanding and reducing inequalities in kidney health care and outcomes in Scotland
IRAS ID
336432
Contact name
Simon Sawhney
Contact email
Sponsor organisation
University of Aberdeen and NHS Grampian
Duration of Study in the UK
1 years, 6 months, 1 days
Research summary
SUMMARY OF RESEARCH
This study will provide a clearer understanding of the sources of inequities in kidney health care in Scotland, and suggest actions that could make kidney care fairer for all. People with kidney disease from deprived (under-served) areas of Scotland are more likely to miss opportunities to receive healthcare, get worse quicker, and die younger. We do not yet know how best to address this. We propose a novel study following 140,000 people with newly diagnosed kidney disease in Scotland. By linking health data from people in the study to the Scottish Censuses of 2011 and 2022, and by following them over time, we will be able to study the relationship between socioeconomic circumstances and kidney health in greater detail than has previously been possible. We will learn how deprivation influences the diagnosis, care, and health outcomes of people from different backgrounds. We will also use this study to evaluate the reverse relationship of how poor kidney health affects their subsequent life circumstances including their ability to work, living with a disability, and mental health. We will talk to people of working age in Scotland who have kidney disease to hear about what it is like for them to live with it and access care. We will also have group discussions with primary care staff to learn about how they diagnose the disease, help patients get the care they need, and any changes they have had to make in their approach. Then, in workshops with patients and professional experts, we will agree on priority strategies and actions that address the problems that we identify.
SUMMARY OF RESULTS
The study examined why people living in deprived communities may experience delays in the diagnosis and early treatment of kidney disease, and what could be done to improve care.
We interviewed 38 people living with chronic kidney disease and 23 healthcare professionals working in general practice in some of the most deprived communities in Scotland. We found that kidney disease was often identified late, when people were already dealing with other health, financial and social pressures.
Many patients said that their diagnosis had been explained only briefly, or not at all. This left them uncertain about what kidney disease meant, what they should do next and when they should expect follow-up care. People described large differences in the information and support they received. Some had healthcare professionals who helped them navigate services, while others felt they had to keep asking for help themselves. One participant said: "They are nae worrying about it... so what's the point in asking?"
The findings showed that financial difficulties, limited time, caring responsibilities, poor health, transport problems and fragmented services could make it harder for people to access timely and consistent kidney care. Care sometimes depended on individual healthcare professionals going beyond their usual role to bridge gaps between services.
We then brought together patients, healthcare professionals and representatives from community organisations to identify practical ways to improve early kidney care. The workshops used findings from the interviews and from the analysis of routinely collected health information.
Participants agreed on three main priorities:
1. Provide kidney health information that is clear, consistent, trustworthy and easy to use.
2. Reduce practical barriers that make it difficult for people to access early care.
3. Provide whole-person support, including mental health support, social prescribing and support from people with lived experience.Social prescribing means helping people access non-medical support in their local community, such as welfare advice, social groups, physical activity or practical support.
Participants suggested that more support could be provided in places that people already use, including community hubs, pharmacies, drop-in clinics and routine health checks. They also recommended more flexible appointments, better coordination between services, clearer responsibility for follow-up, and training and practical tools for primary care staff.
The workshops identified 18 practical activities that could be introduced in a targeted or proportionate way, with greater support provided to people and communities experiencing greater disadvantage.
Overall, the study showed that improving early kidney care requires more than identifying kidney disease. People also need clear information, reliable follow-up, practical help to access services and support that takes account of their wider health and social circumstances.
REC name
HSC REC A
REC reference
24/NI/0037
Date of REC Opinion
20 Mar 2024
REC opinion
Further Information Favourable Opinion