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

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 [AQ2] via a global patient organization network, were invited to an individual or group interview. Data were analysed 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 2 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.

A mixed methods systematic review of digital interventions to support the psychological health and well-being of people living with dermatological conditions

“…We have shown that existing research largely focuses on specific dermatological conditions, mainly psoriasis followed by eczema. Researchers should aim to develop digital interventions targeting other dermatological conditions, such as hidradenitis suppurativa and acne, which carry a substantial psychological burden ( 8 ), as well as digital interventions that tackle psychological impacts that are common across dermatological conditions. The TIDieR checklist and guide ( 32 ) is likely to be a useful tool for intervention developers to consider when planning, developing, and particularly when reporting, complex digital interventions.…”

“…Dermatological conditions can impact all aspects of life with people commonly reporting psychological, social, financial, occupational, and educational consequences, plus challenges to daily activities, in addition to their physical manifestations (1)(2)(3)(4)(5)(6)(7)8). Many individuals living with dermatological conditions consider the psychological impact to be most profound (2).…”

“…Many people with dermatological conditions report not being able to access psychological services ( 4 ), or being dismissed ( 2 ) by medical professionals who fail to understand ( 4 ), or even acknowledge ( 6 ) the severity of the psychological impact of dermatological conditions. Individuals report dissatisfaction with the quality of care leaving them feeling unsupported and with no choice but to cope with their condition alone ( 10 , 8 ). Clearly, additional forms of support are needed to help people to live well with dermatological conditions ( 16 ).…”

Patient prioritisation of impact items to develop the patient‐reported impact of dermatological diseases (PRIDD) measure: European Delphi data

“…1 This high prevalence carries significant impact on quality of life: There is robust and growing literature on the substantial physical, psychological and social burden for patients and their families. [2][3][4][5][6][7][8][9] Despite this, dermatological diseases are often treated superficially, referred to as 'just a rash', and consequently are overlooked in the global health debate. Open Access funding enabled and organized by Projekt DEAL.…”

“…As the first step in new measure development, we collected data via a global qualitative interview study to develop a conceptual framework of impact. 2 We identified 263 areas of impact that cut across diseases and global regions. This work formed, to our knowledge, the basis for the first conceptual framework of the impact of dermatological diseases on patients' lives.…”