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Research project: Measuring treatment workload, burden and capacity to self-manage heart failure

Currently Active: 
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To understand a person's ability to self-manage and foresee episodes when a person's capacity might be exceeded and a more supportive model of care more appropriate, we need to establish the most appropriate methods to measure treatment workload/the work of self-management over time.

The proportion of people with heart failure (HF) is rising, especially among the older population. Patients with this illness have functional limitations, deteriorate steadily and often have a ‘sudden' or unexpected death. HF patients have a large number of symptoms which can be very burdensome, can limit participation in daily activities and reduce quality of life. The burden of symptoms is even greater in those with other co-morbid health conditions. The burden of treatment arising from medications, lifestyle change requirements, multiple appointments, and tests is also a problem yet unlike symptom burden, has received little attention. The fact that patients also have to negotiate care across several different services and care sectors, particularly when they have multiple chronic conditions can be an additional problem.

A high treatment workload and burden can be challenging for self-management. This is because when the work of treatment exceeds a person's capacity, they may not be able to carry out all treatment tasks required to manage their condition. This can lead to worsening of symptoms, reduced use of services, and a reduced ability to self-manage their illness(es). To better understand the self-management support needs of patients who have HF, we need to better understand the relationship between treatment workload and capacity to self-manage, as well as be able to measure these concepts. This would allow us to foresee periods when a more supportive model of care might be more appropriate. 

This exploratory study therefore seeks to explore the work that patients with HF do, and the support they get, to manage their condition as well as determine whether this can be measured over time. To do so, over a 3 month period older patients with HF will take part in two qualitative interviews; map out all the individuals involved in their care; and complete treatment logbooks. Determining both the feasibility of these methods in measuring treatment workload, as well as how participants tolerate data collection is central to the study.

Project team

Dr Katherine Hunt
Liz James
Dr Isabel Anton-Solanas
Prof Alison Richardson
Prof Carl May

Project funder

Annual Adventures in Research - University of Southampton

 

Associated research themes

End of life care
Need assessment
Treatment burden

Related research groups

Complex Healthcare Processes
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