Development of a Conceptual Framework for a Patient-Reported Impact of Dermatological Diseases (PRIDD) Measure: A Qualitative Concept Elicitation Study

Authors

  • Rachael Pattinson School of Healthcare Sciences, Cardiff University, Room 12.14, Eastgate House, 35–43 Newport Road, Cardiff, CF24 0AB, UK https://orcid.org/0000-0002-3145-3710
  • Rachael M. Hewitt School of Healthcare Sciences, Cardiff University, Room 12.14, Eastgate House, 35–43 Newport Road, Cardiff, CF24 0AB, UK https://orcid.org/0000-0002-3829-5604
  • Nirohshah Trialonis-Suthakharan Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE), Hamburg, Germany https://orcid.org/0000-0002-6826-6951
  • Evangelos Chachos Turner Institute for Brain and Mental Health, Monash University, Melbourne, Australia https://orcid.org/0000-0002-1352-4108
  • Nick Courtier School of Healthcare Sciences, Cardiff University, Room 12.14, Eastgate House, 35–43 Newport Road, Cardiff, CF24 0AB, UK https://orcid.org/0000-0001-6098-5882
  • Jennifer Austin International Alliance of Dermatology Patient Organizations, Ottawa, Canada
  • Christine Janus International Alliance of Dermatology Patient Organizations, Ottawa, Canada
  • Matthias Augustin Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE) https://orcid.org/0000-0002-4026-8728
  • Chris Bundy School of Healthcare Sciences, Cardiff University, Room 12.14, Eastgate House, 35–43 Newport Road, Cardiff, CF24 0AB, UK https://orcid.org/0000-0002-5981-3984

DOI:

https://doi.org/10.2340/actadv.v102.2401

Keywords:

patient-reported outcome measure, skin disease, psychological distress, qualitative research, quality of life, life change events

Abstract

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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Additional Files

Published

2022-11-28

How to Cite

Pattinson, R., Hewitt, R. M. ., Trialonis-Suthakharan, N. ., Chachos, E. ., Courtier, N., Austin, J. ., … Bundy, C. . (2022). Development of a Conceptual Framework for a Patient-Reported Impact of Dermatological Diseases (PRIDD) Measure: A Qualitative Concept Elicitation Study. Acta Dermato-Venereologica, 102, adv00823. https://doi.org/10.2340/actadv.v102.2401