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Symptom burden in multiple long-term conditions: An AI-supported, mixed-methods concept elicitation study
Sarah E Hughes1,2,3,4, Benjamin M A Hughes1,2, Shamil Haroon2
1Centre for Patient Reported Outcome Research, University of Birmingham, Birmingham, Birmingham, UK.
Objective:
To develop the conceptual framework for an MLTC-specific patient-reported outcome measure (PROM), the Symptom Burden Questionnaire™ for MLTC (SBQ™-MLTC).
Design:
Mixed-methods study: (1) symptom list generation; (2) assessment of list face validity; and (3) construction of a conceptual framework.
Setting:
Concept elicitation and conceptual framework development using existing PROMs identified through the Mapi Research Trust PROQOLID eCOA database and AI-generated symptom lists.
Participants:
Fifty-one condition-specific PROMs with evidence of patient involvement during concept elicitation were included for symptom extraction. ChatGPT-4 generated symptom lists for 24 conditions prevalent in MLTC. Seventeen healthcare practitioners reviewed symptom relevance and contributed to refinement of the conceptual framework.
Main Outcome Measures:
Identification, refinement, and organisation of relevant MLTC symptoms into body system and functional domains, and development of the SBQ™-MLTC's conceptual framework.
Results:
ePROVIDE searches in July and August 2023 identified 51 condition-specific PROMs for 24 conditions prevalent in MLTC. ChatGPT-4 was prompted to generate a list of 75 symptoms for each condition. A merged list of 2202 symptoms was iteratively reduced to 190 symptoms for healthcare practitioner review. The final conceptual framework included 151 symptoms spanning 18 body system and functional domains.
Conclusions:
This study represents the first phase in the development of an MLTC-specific PROM of symptom burden. Generative AI output triangulated with content from existing PROMs and healthcare practitioner review proved a feasible approach to concept elicitation. Planned cognitive debriefing will confirm content validity of the SBQ™-MLTC for people with lived experience. In the future, the SBQ™-MLTC could support integrated, symptom-led approaches for clinical management of MLTC.
