Dorset Treatment Burden Follow-up Survey and measurement tools (v1)
Research type
Research Study
Full title
Change in treatment burden among people with multimorbidity – a follow up survey and development of efficient measurement tools for primary care
IRAS ID
292906
Contact name
Alison Knight
Contact email
Sponsor organisation
University of Southampton
Duration of Study in the UK
1 years, 2 months, 28 days
Research summary
Research Summary
The UK population is ageing as people live longer, and more people are living with long-term health problems. Having several health problems at once means managing their differing demands, such as attending many appointments with different doctors and health professionals, taking several medications and making lifestyle changes. The workload and impact of doing these things has been called ‘treatment burden’. Some people may feel ‘overburdened’ by everything they have to do to look after their health, and this may lead to them not doing certain things that are, in theory, meant to help, such as attending appointments.
We have conducted a large survey in Dorset in which over 800 people with three or more long-term health problems completed a questionnaire that included a way of measuring treatment burden using ten questions. About one in five people reported ‘high’ treatment burden. However, using a questionnaire like this to measure treatment burden in most NHS settings is probably not practical. To try and make this simpler in the future, we included a single question asking people to score the overall effort of looking after their health. We also started to explore whether we could assess treatment burden just using NHS databases. Of course, this survey was just a ‘snapshot’ at one point in time. It is likely that treatment burden changes over time for several reasons, but we don’t fully understand how and why it might change.In this research we want to do two things:
1. To explore the factors that are associated with change in treatment burden over time by conducting a follow up survey with the people who completed our previous survey. This will include refining our single treatment burden question and seeing how it performs in the follow up survey.
2. To collect information from the GP computer systems about the people in our previous survey who agreed to this, in order to compare certain aspects of this information with their survey-measured, self-reported treatment burden. We hope to use this to develop a way whereby GPs could identify potentially overburdened people without having to ask patients to complete questionnaires.We anticipate three main benefits of this research:
Firstly, understanding what contributes most to treatment burden and its change over time might lead us to identify those most at risk of change and re-organise certain aspects of healthcare to make it easier for patients, and to develop better ways of supporting them.
Secondly, developing a way that GPs can check which of their patients might be at risk of being over-burdened just by running some checks on their database could lead to proactively trying to address treatment burden through things like carefully reviewing medication.
Thirdly, if our single question proves good enough once we have improved it, it would be a very quick way of checking whether people are feeling overburdened when they are seen in GP and hospital clinics.Summary of Results
Among over 800 people aged 55 or older, living with multiple long-term conditions across Dorset, high treatment burden was common in our first survey (about a fifth of all survey respondents). Making lifestyle changes and arranging appointments were particular sources of difficulty. Having limited health literacy and experiencing financial difficulty were strongly associated with greater treatment burden. Having more conditions and more prescribed regular medications were also associated. A single-item treatment burden measure was only moderately good at discriminating between high and non-high burden.
In this study among 300 of these people who responded to a follow up survey after an average of two and a half years, about a third experienced an increase in treatment burden. This was linked to having more than five long-term conditions and living more than ten minutes from the GP, particularly for people with limited health literacy. A slightly revised single-item measure still only performed moderately, so it needs more development before being used in general practice.
Using data from participants’ GP records also only performed moderately at reflecting high treatment burden, so further development is needed to use routine health records to identify those at risk of high treatment burden.
REC name
East Midlands - Leicester South Research Ethics Committee
REC reference
21/EM/0021
Date of REC Opinion
27 Jan 2021
REC opinion
Further Information Favourable Opinion