Sarah E Hughes, Benjamin M A Hughes, Shamil Haroon, Eleanor Hathaway, Nicola Anderson, Christel McMullan, Michael Newnham, Clare Taylor, Alastair Denniston, Steven Backhouse, Andrew Filer, Karim Raza, Julia Scarisbrick, Clare Anderson, Matthew Lee, Lee Watts, Victoria Hodgetts Morton, Sarah Hillman, Faraz Mughal, Ed Day, Tariq Sami, Aliza Jesani, Thomas Jackson, Philip Collis, John Devin Peipert, Melanie Calvert
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引用次数: 0
Abstract
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.
期刊介绍：
JRSM Open is a peer reviewed online-only journal that follows the open-access publishing model. It is a companion journal to the Journal of the Royal Society of Medicine. The journal publishes research papers, research letters, clinical and methodological reviews, and case reports. Our aim is to inform practice and policy making in clinical medicine. The journal has an international and multispecialty readership that includes primary care and public health professionals.
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