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Research project: Understanding treatment burden and enhancing capacity for older people with chronic kidney disease

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This study is exploring people’s experience of managing chronic kidney disease (CKD) - a common long-term condition affecting about a third of older people in the UK.

Duration: Start date   1st November 2018  End date 31st Oct 2020

Contact: s.fraser@soton.ac.uk

Background

Chronic kidney disease (CKD) is a common long-term condition affecting about a third of older people in the UK. Mild or moderate CKD can progress to severe CKD and, in some cases, requires renal replacement therapy (dialysis or kidney transplantation). Among older people, CKD usually occurs alongside other long-term health problems. Long-term conditions bring demands such as the need for appointments, tests, medications, travel, disease-monitoring, lifestyle changes and hospital admissions. These have been described as the ‘treatment burden’ and people’s ability to manage them as ‘capacity’. There may be a ‘capacity gap’ i.e. when there is a mismatch between the burden and people’s ability to manage it. Moderate CKD may not incur much treatment burden but, if it gets more severe, this may change. People with CKD may be asked to follow specific diets, attend more appointments or take new medications. The overall treatment burden may be considerable, particularly alongside other conditions (each bringing their own burden), but relatively little is known about this, or what capacity entails for older people who have CKD. It is also unclear how an individual’s capacity is influenced by the increasing burden associated with more advanced CKD.

Aims

This research aims to understand the nature and perception of treatment burden and capacity for older people with CKD who do not currently need renal replacement therapy (i.e. those not on dialysis or with a kidney transplant). It also aims to explore the understanding of their health care professionals about treatment burden and capacity.

Methods

We will carry out qualitative interviews with about 25-30 people with differing severities of CKD to explore their experiences and views on what aspects of managing the condition are burdensome, and insights they have about what helps. We will also use focus group discussions with healthcare teams who look after older people with CKD to explore their views on treatment burden and strengthening their capacity.

Potential impact

This improved understanding would allow multi-professional healthcare teams to appreciate (and possibly lessen) the challenges of managing CKD alongside other conditions. It may influence the NHS to organise care for older people with CKD in more joined-up ways that consider treatment burden. It would help people with CKD identify and describe what they face and how they cope with it.

 

Funder: Kidney Care UK and British Renal Society

Related research groups

Primary Care & Population Sciences
Population Health Sciences Research group
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