Pattinson, Rachael ORCID: https://orcid.org/0000-0002-3145-3710
2021.
The Patient-Reported Impact of
Dermatological Diseases (PRIDD)
measure: a mixed methods
measurement development and
validation study.
PhD Thesis,
Cardiff University.
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Abstract
Background Dermatological conditions are associated with pain, disfigurement, disability, and stigma, causing a physical, psychological and social burden. Current dermatology-specific (used across dermatological conditions) patient-reported outcome measures (PROMs) do not comprehensively capture the wider impact of the condition on the patient’s life. This thesis aims to complete the content validity phase of the development of PRIDD (Patient-Reported Impact of Dermatological Diseases), a new PROM designed to comprehensively measure the impact of living with a dermatological condition. Methods A mixed methods study, consisting of four sequential phases. 1) A COSMIN (consensus-based standards for the selection of health measurement instruments) systematic review evaluated the quality and suitability of existing dermatology-specific PROMs to comprehensively measure impact. 2) The qualitative interview study formed the basis of a conceptual framework of impact, which guided measure item generation. 3) A Delphi study elicited consensus on which items to prioritise for inclusion in PRIDD. 4) A cognitive interview study evaluated the content validity, acceptability and feasibility of PRIDD. Adults (≥18-years) worldwide either living with a dermatological condition or representing a dermatology patient organisation were recruited. The study was theoretically informed by measurement theory, the conceptual model of health-related quality of life, and the Common-Sense Self- Regulatory Model. Results 1235 people across 62 countries and 96 dermatological conditions participated. None of the 36 PROMs evaluated in the systematic review was recommended for use as the ‘gold ii standard’, primarily due to insufficient patient input. The conceptual framework depicted impact as a multifaceted construct involving physical, psychological, social, financial and daily functioning. Item generation, reduction and refinement produced a pilot-tested version of PRIDD consisting of 26 items. Conclusions This series of studies represents best practice in measurement development. PRIDD’s development was patient-centred and met the gold-standard COSMIN criteria, providing strong evidence of content validity. The final phase, psychometric testing, is on-going.
Item Type: | Thesis (PhD) |
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Date Type: | Completion |
Status: | Unpublished |
Schools: | Healthcare Sciences |
Date of First Compliant Deposit: | 27 January 2022 |
Last Modified: | 10 Nov 2022 10:29 |
URI: | https://orca.cardiff.ac.uk/id/eprint/146997 |
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