Patient-Reported Outcome Measures in Dermatology: A Systematic Review

Abstract

This is the first study to systematically evaluate all published dermatology-specific (for use across skin conditions), patient-reported outcome measures against the goldstandard Consensus-based Standards for the selection of health Measurement Instruments (COSMIN) criteria and make evidence-based recommendations for their use. The study found that no dermatology-specific patient-reported outcome measure can be unequivocally recommended for use. These results question the validity of the data collected using these patient-reported outcome measures, which has implications for clinical decision-making and research. 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 dermatologyspecific (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 (COS-MIN) criteria were used to assess the measurement properties and methodological quality of studies. A total of 12,925 abstracts were identified. Zero patientreported 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.

Can patient-reported outcome measures be used to predict consultation needs in patients with psoriasis?: A survey study

“…However, the increase in number of patients with a green/yellow outcome who still feels it is necessary to see a doctor indicates that we, with the PSO PROM are not able to measure the patient’s individual needs in regard to consultations. It is difficult to comprehensively assess the impact of living with a skin condition and Pattinson [ 16 ] describes that no single set of PROMs fully captured the patient experience.…”

Evaluation of Skindex-16 construct validity in routinely collected psoriasis data: a retrospective analysis of the relationship between overall physician global assessment scores and Skindex-16 and measure discordance

“…(9) To be useful, PROMs must be well-validated, have favorable measurement properties across a broad spectrum of patients and disease severities, and offer interpretable and actionable data. (9)(10)(11)(12) Construct validity, or the evaluation of how well designed a measure is to evaluate its target area, HRQL, is vital to this goal. While the Dermatology Life Quality Index (DLQI) and the adapted DLQI-Relevant (DLQI-R) instruments have been evaluated in psoriasis, (13)(14)(15)(16)) construct validity testing for Skindex-16 remains sparse in psoriasis.…”

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

“…Theoretical model of the impact of dermatological conditions. et al "Development of a conceptual framework for the Patient-Reported Impact of Dermatological Diseases measure" Acta Derm Venereol 2022Implications for Patient-Reported Impact of Dermatological Diseases (PRIDD)Multiple aspects of impact have not previously been captured using a single measurement instrument, and previous measures have focused on point-in-time impacts(3). This study supports the concepts of Cumulative Life Course Impairment(15) and the Major Life-Changing Decision Profile(16) in dermatology by unifying distinct point-in-time and cumulative impacts to attain a comprehensive understanding of the overall impact of living with a dermatological condition.…”

“…Our earlier systematic review ( 3 ) of dermatologyspecific PROMs (which are used across dermatological conditions) revealed that the existing measures, including the widely-used Dermatology Life Quality Index (DLQI) and Skindex, could not be recommended for use according to the gold-standard consensus-based standards for the selection of health measurement instruments (COSMIN) criteria ( 4 ), primarily due to insufficient patient input during development. Thus existing PROMs may not fully capture aspects of impact that are important to patients.…”