Development of a Conceptual Framework for a Patient-Reported Impact of Dermatological Diseases (PRIDD) Measure: A Qualitative Concept Elicitation Study
DOI:
https://doi.org/10.2340/actadv.v102.2401Keywords:
patient-reported outcome measure, skin disease, psychological distress, qualitative research, quality of life, life change eventsAbstract
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.
Downloads
References
Ahmed A, Leon A, Butler DC, Reichenberg J. Quality-of-life effects of common dermatological diseases. Semin Cutan Med Surg 2013; 32: 101-109.
https://doi.org/10.12788/j.sder.0009
Koo J, Lebwohl A. Psycho dermatology: the mind and skin connection. Am Fam Physician 2001; 64: 1873-1878.
Pattinson RL, Trialonis-Suthakharan N, Gupta S, Henry AL, Lavallée JF, Otten M, et al. Patient-reported outcome measures in dermatology: a systematic review. Acta Derm Venereol 2021; 101: adv00559.
https://doi.org/10.2340/00015555-3884
Mokkink LB, de Vet HCW, Prinsen CAC, Patrick DL, Alonso J, Bouter LM, et al. COSMIN risk of bias checklist for systematic reviews of patient-reported outcome measures. Qual Life Res 2018; 27: 1171-1179.
https://doi.org/10.1007/s11136-017-1765-4
Apfelbacher CJ, Nelson PA. Patient-reported outcome measures and qualitative research in dermatology: the quest for authenticity. Br J Dermatol (1951) 2017; 176: 285-287.
https://doi.org/10.1111/bjd.15251
Terwee C, Prinsen C, Chiarotto A, Westerman M, Patrick D, Alonso J, et al. COSMIN methodology for evaluating the content validity of patient-reported outcome measures: a Delphi study. Qual Life Res 2018; 27: 1159-1170.
https://doi.org/10.1007/s11136-018-1829-0
Brod M, Tesler LE, Christensen TL. Qualitative research and content validity: developing best practices based on science and experience. Qual Life Res 2009; 18: 1263-1278.
https://doi.org/10.1007/s11136-009-9540-9
Mokkink LB, Prinsen CAC, Patrick DL, Alonso J, Bouter LM, de Vet HCW, et al. COSMIN Study Design checklist for patient reported outcome measurement instruments. COSMIN, The Netherlands, 2019. [Last accessed September 9, 2022] Available from https://cosmin.nl/wp-content/uploads/COSMIN-study-designing-checklist_final.pdf.
Gagnier JJ, Lai J, Mokkink LB, Terwee CB. COSMIN reporting guideline for studies on measurement properties of patient-reported outcome measures. Qual Life Res 2021; 30: 2197-2218.
https://doi.org/10.1007/s11136-021-02822-4
Terwee CB, Prinsen CAC, Chiarotto A, de Vet HCW, Bouter LM, Alonso J, et al. COSMIN methodology for assessing the content validity of PROMs - user manual (version 1.0). COSMIN, The Netherlands, 2018. [Last accessed September 9, 2022] Available from https://cosmin.nl/wp-content/uploads/COSMIN-methodology-for-content-validity-user-manual-v1.pdf.
Saumure K. Data Saturation. In: Given L, editor. The Sage encyclopedia of qualitative research methods. Thousand Oaks, CA: SAGE Publications Inc., 2008: p. 196-197.
Wilson IB, Cleary PD. Linking clinical variables with health-related quality of life: a conceptual model of patient outcomes. JAMA 1995; 273: 59-65.
https://doi.org/10.1001/jama.1995.03520250075037
Leventhal H, Nerenz DR, Steele DJ. Illness representations and coping with health threats. In: Baum A, Taylor SE, Singe JE, editors. Handbook of psychology and health (volume IV): social psychological aspects of health. London: Routledge, 1984.
Gale NK, Heath G, Cameron E, Rashid S, Redwood S. Using the framework method for the analysis of qualitative data in multi-disciplinary health research. BMC Med Res Methodol 2013; 13: 117.
https://doi.org/10.1186/1471-2288-13-117
Kimball AB, Gieler U, Linder D, Sampogna F, Warren RB, Augustin M. Psoriasis: is the impairment to a patient's life cumulative? J Eur Acad Dermatol Venereol 2010; 24: 989-1004.
https://doi.org/10.1111/j.1468-3083.2010.03705.x
Bhatti ZU, Salek MS, Finlay AY. Major life changing decisions and cumulative life course impairment. J Eur Acad Dermatol Venereol 2011; 25: 245.
https://doi.org/10.1111/j.1468-3083.2010.03930.x
de Vet HCW, Terwee CB, Mokkink LB, Knol DL. Measurement in medicine: a practical guide. Cambridge: Cambridge University Press, 2011.
https://doi.org/10.1017/CBO9780511996214
World Health Organization (WHO). Constitution of the World Health Organization. Geneva: WHO, 1948.
World Health Organization (WHO). People-centred health care: a policy framework. Geneva: WHO, 2007.
Jensen MP, Turner JA, Romano JM. Changes in beliefs, catastrophizing, and coping are associated with improvement in multidisciplinary pain treatment. J Consult Clin Psychol 2001; 69: 655.
https://doi.org/10.1037/0022-006X.69.4.655
Fortune DG, Richards HL, Griffiths CE, Main CJ. Psychological stress, distress and disability in patients with psoriasis: consensus and variation in the contribution of illness perceptions, coping and alexithymia. Br J Clin Psychol 2002; 41: 157-174.
https://doi.org/10.1348/014466502163949
Fortune DG, Richards HL, Main CJ, Griffiths CEM. What patients with psoriasis believe about their condition. J AM Acad Dermatol 1998; 39: 196-201.
https://doi.org/10.1016/S0190-9622(98)70074-X
Fortune DG, Richards HL, Main CJ, Griffiths CEM. Pathological worrying, illness perceptions and disease severity in patients with psoriasis. Br J Clin Psychol 2000; 5: 71-82.
https://doi.org/10.1348/135910700168775
Thorneloe RJ, Griffiths CEM, Emsley R, Ashcroft DM, Cordingley L, Barker J, et al. Intentional and unintentional medication non-adherence in psoriasis: the role of patients' medication beliefs and habit strength. J Invest Dermatol 2018; 138: 785-794.
https://doi.org/10.1016/j.jid.2017.11.015
Gallagher KM, Updegraff JA. Health message framing effects on attitudes, intentions, and behavior: a meta-analytic review. Ann Behav Med 2012; 43: 101-116.
https://doi.org/10.1007/s12160-011-9308-7
Chisholm A, Pearce CJ, Chinoy H, Warren RB, Bundy C. Distress, misperceptions, poor coping and suicidal ideation in psoriatic arthritis: a qualitative study. Rheumatology 2016; 55: 1047-1052.
https://doi.org/10.1093/rheumatology/kew009
Hewitt RM, Pattinson R, Cordingley L, Griffiths CEM, Kleyn E, McAteer H, et al. Implementation of the PsoWell™ model for the management of people with complex psoriasis. Acta Derm Venereol 2021; 101: adv00445.
https://doi.org/10.2340/00015555-3802
Chisholm A, Nelson PA, Pearce CJ, Littlewood AJ, Kane K, Henry AL, et al. Motivational interviewing-based training enhances clinicians' skills and knowledge in psoriasis: findings from the Pso Well® study. Br J Dermatol 2017; 176: 677-686.
https://doi.org/10.1111/bjd.14837
Guyatt GH, Kirshner B, Jaeschke R. Measuring health status: what are the necessary measurement properties? J Clin Epidemiol 1992; 45: 1341-1345.
Additional Files
Published
How to Cite
License
Copyright (c) 2022 Rachael Pattinson, Rachael M. Hewitt, Nirohshah Trialonis-Suthakharan, Evangelos Chachos, Nick Courtier, Jennifer Austin, Christine Janus, Matthias Augustin, Chris Bundy
This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.
All digitalized ActaDV contents is available freely online. The Society for Publication of Acta Dermato-Venereologica owns the copyright for all material published until volume 88 (2008) and as from volume 89 (2009) the journal has been published fully Open Access, meaning the authors retain copyright to their work.
Unless otherwise specified, all Open Access articles are published under CC-BY-NC licences, allowing third parties to copy and redistribute the material in any medium or format and to remix, transform, and build upon the material for non-commercial purposes, provided proper attribution to the original work.
