Patient-Reported Outcome Measures in Dermatology: A Systematic Review

Overview

Journal Acta Derm Venereol

Specialty Dermatology

Date 2021 Jul 15

PMID 34263330

Citations 13

Authors

Rachael L Pattinson

Nirohshah Trialonis-Suthakharan

Sunnia Gupta

Alasdair L Henry

Jacqueline F Lavallee

Marina Otten

Timothy Pickles

Nick Courtier

Jennifer Austin

Christine Janus

Matthias Augustin

Chris Bundy

Affiliations

Soon will be listed here.

Abstract

By relying on data from existing patient-reported outcome measures of quality of life, the true impact of skin conditions on patients' lives may be underestimated. This study systematically reviewed all dermatology-specific (used across skin conditions) patient-reported outcome measures and makes evidence-based recommendations for their use. The study protocol is registered on PROSPERO (CRD42018108829). PubMed, PsycInfo and CINAHL were searched from inception to 25 June 2018. The Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN) criteria were used to assess the measurement properties and methodological quality of studies. A total of 12,925 abstracts were identified. Zero patient-reported outcome measures were assigned to category A (ready for use without further validation), 31 to category B (recommended for use, but only with further validation) and 5 to category C (not recommended for use). There is no gold-standard dermatology-specific patient-reported outcome measure that can be recommended or used without caution. A new measure that can comprehensively capture the impact of dermatological conditions on the patient's life is needed.

Citing Articles

TELEPROM Psoriasis: Enhancing patient-centered care and health-related quality of life (HRQoL) in moderate-to-severe plaque psoriasis.

Mercadal-Orfila G, Lopez Sanchez P, Pou Alonso A, Ibarra-Barrueta O, Monte-Boquet E, Borras Blasco J Front Med (Lausanne). 2024; 11:1465725.

PMID: 39720651 PMC: 11667264. DOI: 10.3389/fmed.2024.1465725.

A Systematic Review of 207 Studies Describing Validation Aspects of the Dermatology Life Quality Index.

Vyas J, Johns J, Ali F, Ingram J, Salek S, Finlay A Acta Derm Venereol. 2024; 104:adv41120.

PMID: 39508500 PMC: 11559262. DOI: 10.2340/actadv.v104.41120.

Ghezzi G, Costanzo A, Borroni R J Clin Med. 2024; 13(16).

PMID: 39200764 PMC: 11354811. DOI: 10.3390/jcm13164623.

Demonstrating the benefit of a cellulitis-specific patient reported outcome measure (CELLUPROM) as part of the National Cellulitis Improvement Programme in Wales.

Gabe-Walters M, Thomas M, Jenkins L J Patient Rep Outcomes. 2024; 8(1):69.

PMID: 38985230 PMC: 11236826. DOI: 10.1186/s41687-024-00754-4.

Piontek K, Baalmann A, Feissel A, Apfelbacher C Dermatologie (Heidelb). 2024; 75(5):392-399.

PMID: 38532023 DOI: 10.1007/s00105-024-05327-6.

References

Ferraz L, Almeida F, Vasconcellos M, Faccina A, Ciconelli R, Ferraz M . The impact of lupus erythematosus cutaneous on the Quality of life: the Brazilian-Portuguese version of DLQI. Qual Life Res. 2006; 15(3):565-70. DOI: 10.1007/s11136-005-2638-9. View

Bhatti Z, Salek M, Finlay A . Major life changing decisions and cumulative life course impairment. J Eur Acad Dermatol Venereol. 2010; 25(2):245-6. DOI: 10.1111/j.1468-3083.2010.03930.x. View

Terwee C, Bot S, de Boer M, van der Windt D, Knol D, Dekker J . Quality criteria were proposed for measurement properties of health status questionnaires. J Clin Epidemiol. 2006; 60(1):34-42. DOI: 10.1016/j.jclinepi.2006.03.012. View

Shikiar R, Harding G, Leahy M, Lennox R . Minimal important difference (MID) of the Dermatology Life Quality Index (DLQI): results from patients with chronic idiopathic urticaria. Health Qual Life Outcomes. 2005; 3:36. PMC: 1180464. DOI: 10.1186/1477-7525-3-36. View

de Korte J, Mombers F, Sprangers M, Bos J . The suitability of quality-of-life questionnaires for psoriasis research: a systematic literature review. Arch Dermatol. 2002; 138(9):1221-7; discussion 1227. DOI: 10.1001/archderm.138.9.1221. View

Liu J, Yao M, Si A, Xiong L, Zhou H . Life quality of Chinese patients with chronic urticaria as assessed by the dermatology life quality index. J Eur Acad Dermatol Venereol. 2011; 26(10):1252-7. DOI: 10.1111/j.1468-3083.2011.04277.x. View

Twiss J, Meads D, Preston E, Crawford S, McKenna S . Can we rely on the Dermatology Life Quality Index as a measure of the impact of psoriasis or atopic dermatitis?. J Invest Dermatol. 2011; 132(1):76-84. DOI: 10.1038/jid.2011.238. View

Chernyshov P . Health-related quality of life in adult atopic dermatitis and psoriatic patients matched by disease severity. G Ital Dermatol Venereol. 2014; 151(1):37-43. View

Mork C, Wahl A, Moum T . The Norwegian version of the dermatology life quality index: a study of validity and reliability in psoriatics. Acta Derm Venereol. 2002; 82(5):347-51. DOI: 10.1080/000155502320624078. View

10.

Cowdell F, Ersser S, Gradwell C, Thomas P . The Person-Centered Dermatology Self-Care Index: a tool to measure education and support needs of patients with long-term skin conditions. Arch Dermatol. 2012; 148(11):1251-5. DOI: 10.1001/archdermatol.2012.1892. View

11.

Malakouti M, Brown G, Leon A, Wang E, Naegeli A, Edson-Heredia E . The dermatologic intimacy scale: quantitatively measuring the impact of skin disease on intimacy. J Dermatolog Treat. 2016; 28(4):347-352. DOI: 10.1080/09546634.2016.1252032. View

12.

He Z, Lu C, Basra M, Ou A, Yan Y, Li L . Psychometric properties of the Chinese version of Dermatology Life Quality Index (DLQI) in 851 Chinese patients with psoriasis. J Eur Acad Dermatol Venereol. 2011; 27(1):109-15. DOI: 10.1111/j.1468-3083.2011.04371.x. View

13.

Hahn H, Melfi C, Chuang T, Lewis C, GONIN R, Hanna M . Use of the Dermatology Life Quality Index (DLQI) in a midwestern US urban clinic. J Am Acad Dermatol. 2001; 45(1):44-8. DOI: 10.1067/mjd.2001.110880. View

14.

He Z, Lu C, Chren M, Zhang Z, Li Y, Ni X . Development and psychometric validation of the Chinese version of Skindex-29 and Skindex-16. Health Qual Life Outcomes. 2014; 12:190. PMC: 4305222. DOI: 10.1186/s12955-014-0190-4. View

15.

Anderson R, Rajagopalan R . Development and validation of a quality of life instrument for cutaneous diseases. J Am Acad Dermatol. 1997; 37(1):41-50. DOI: 10.1016/s0190-9622(97)70210-x. View

16.

Reilly M, Lavin P, Kahler K, Pariser D . Validation of the Dermatology Life Quality Index and the Work Productivity and Activity Impairment-Chronic Hand Dermatitis questionnaire in chronic hand dermatitis. J Am Acad Dermatol. 2003; 48(1):128-30. DOI: 10.1067/mjd.2003.128. View

17.

Mokkink L, Terwee C, Patrick D, Alonso J, Stratford P, Knol D . The COSMIN checklist for assessing the methodological quality of studies on measurement properties of health status measurement instruments: an international Delphi study. Qual Life Res. 2010; 19(4):539-49. PMC: 2852520. DOI: 10.1007/s11136-010-9606-8. View

18.

Alghamdi K, Alshammari S . Arabic version of Skindex-16: translation and cultural adaptation, with assessment of reliability and validity. Int J Dermatol. 2007; 46(3):247-52. DOI: 10.1111/j.1365-4632.2007.03013.x. View

19.

Apfelbacher C, Heinl D, Prinsen C, Deckert S, Chalmers J, Ofenloch R . Measurement properties of adult quality-of-life measurement instruments for eczema: protocol for a systematic review. Syst Rev. 2015; 4:48. PMC: 4403900. DOI: 10.1186/s13643-015-0041-3. View

20.

Mokkink L, Terwee C, Patrick D, Alonso J, Stratford P, Knol D . The COSMIN study reached international consensus on taxonomy, terminology, and definitions of measurement properties for health-related patient-reported outcomes. J Clin Epidemiol. 2010; 63(7):737-45. DOI: 10.1016/j.jclinepi.2010.02.006. View