162 Validation of a patient-reported outcome measure in adults with morphea

نویسندگان

چکیده

Morphea is an inflammatory skin disease resulting in sclerosis of underlying tissues which causes functional limitations and cosmetic sequalae that negatively impact quality life. Previous health-related life (HRQoL) patient reported outcome (PRO) studies have focused on children a validated measure, the Localized Scleroderma Quality Life Instrument (LoSQI), has been developed. No PRO measure exists for adults with morphea. We aimed to validate first adult morphea specific using qualitative quantitative methods. hypothesize LoSQI will support validity capturing patient-reported Qualitative measures included focus groups identify key domains affected cognitive interviews items selected LoSQI. Quantitative analysis from field testing are forthcoming. Focus revealed within content pediatric unique including worry about prognosis, family planning, effects intimate relationships. Adults emphasized stiffness limited mobility, rather than itch by patients. Feedback resulted removal not resonant adults, feeling embarrassment treatment as well minor changes instructions. conclude experience HRQoL compared accurately capture patient’s The represents morphea-specific important development improvement clinical trials improved outcomes.

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ژورنال

عنوان ژورنال: Journal of Investigative Dermatology

سال: 2022

ISSN: ['1523-1747', '0022-202X']

DOI: https://doi.org/10.1016/j.jid.2022.05.169