Treatment burden in multiple long-term conditions: a mixed-methods study protocol

Background Treatment burden represents the work patients undertake because of their healthcare, and the impact of that effort on the patient. Most research has focused on older adults (65+) with multiple long-term conditions (MLTC-M) but there are more younger adults (18-65) living with MLTC-M and they may experience treatment burden differently. Understanding experiences of treatment burden, and identifying those most at risk of high treatment burden, are important for designing primary care services to meet their needs.

Aim To understand the treatment burden associated with MLTC-M, for people aged 18–65 years, and how primary care services affect this burden.

Design & setting Mixed-methods study in 20–33 primary care practices in two UK regions.

Method i. In-depth qualitative interviews with adults living with MLTC-M (approximately 40 participants) to understand their experiences of treatment burden and the impact of primary care; with a think-aloud aspect to explore face validity of a novel short treatment burden questionnaire for routine clinical use (STBQ) in the initial 15 interviews. ii. Cross-sectional patient survey (approximately 1,000 participants) with linked routine medical record data to examine the factors associated with treatment burden for people living with MLTC-M, and to test the validity of STBQ.

Conclusion This study will generate in-depth understanding of the treatment burden experienced by people aged 18–65 years living with MLTC-M, and how primary care services affect this burden. This will inform further development and testing of interventions to reduce treatment burden, and potentially influence MLTC-M trajectories and improve health outcomes.