Development of a Conceptual Framework for a Patient-Reported Impact of Dermatological Diseases (PRIDD) Measure: A Qualitative Concept Elicitation Study
Keywords:patient-reported outcome measure, skin disease, psychological distress, qualitative research, quality of life, life change events
Existing patient-reported outcome measures cannot comprehensively capture the full impact of living with a dermatological condition. The aim of this study was to develop a conceptual framework on which to build a new Patient-Reported Impact of Dermatological Diseases (PRIDD) measure. Adults (≥ 18 years of age) living with a dermatological condition, worldwide and/or representatives from a patient organization recruited via a global patient organization network, were invited to an individual or group interview. Data were analyzed thematically. Sixty-five people from 29 countries, representing 29 dermatological conditions, participated. Key themes were: (i) impacts at the individual, organizational and societal levels; (ii) impacts were point-in-time and cumulative; and (iii) impact is a multifaceted construct, with two subthemes (iiia) common impacts and (iiib) psychological and social impacts are most significant. The conceptual framework shows that impact is a multifaceted concept presenting across physical, psychological, social, financial, daily functioning and healthcare, and provides the basis for co-constructing the PRIDD with patients.
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Copyright (c) 2022 Rachael Pattinson, Rachael M. Hewitt, Nirohshah Trialonis-Suthakharan, Evangelos Chachos, Nick Courtier, Jennifer Austin, Christine Janus, Matthias Augustin, Chris Bundy
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