Person-centred outcomes for integrated care: An AI-supported, multi-method study to develop a novel outcome measure for multiple long-term conditions

Background: The rising prevalence of multiple long-term conditions (MLTC), defined as the co-existence of two or more chronic health conditions within a person, is placing increasing strain on health and care systems as they strive to meet the complex needs of this diverse patient group. People living with multiple long-term conditions often experience a substantial symptom burden from overlapping conditions and complex treatment regimens, which can impact quality of life more than the underlying diagnoses.

Patient-reported outcome measures (PROMs), validated questionnaires assessing how a person feels and functions, have the potential to support person-centred care through holistic assessment of symptom burden.

 

Approach: This study aimed to develop a conceptual framework for a novel PROM assessing symptom burden in multiple long-term conditions. A multi-phase, multi-method concept elicitation study was undertaken that included a rapid review of existing PROMs developed for 24 single conditions prevalent in patients with multiple long-term conditions and the use of generative AI to produce symptom lists for each condition.

 

Through iterative reduction, harmonisation, and refinement, a consolidated symptom list was developed and evaluated for relevance and comprehensiveness by an expert panel comprising 17 clinicians representing a range of specialities. The finalised list guided the construction of the conceptual framework.

 

Results: Existing PROMs were identified from a clinical outcome assessment (COA) database and systematically reviewed to identify symptoms relevant to multiple long-term conditions. These were extracted and merged with AI-generated symptom lists. Consensus-based refinement produced a harmonised list of symptoms, which was further appraised by clinical experts. The resulting conceptual framework organises 151 symptoms across multiple body systems and includes a cross-cutting domain measuring the impact of symptoms on daily life.

Implications: This framework provides a foundation for comprehensive measurement of symptom burden and represents the initial step in the development of a holistic, transdiagnostic PROM for multiple long-term conditions where none currently exist. Such cross-cutting measures, as a common metric, could support person-centred, integrated care by reducing siloed, condition-specific approaches to the management of multiple long-term conditions, facilitating communication between patients and practitioners and across services. The next phase of development will involve constructing the PROM's items and response scales, followed by cognitive interviews with patients to evaluate content relevance and comprehensiveness of the new questionnaire.