Patients, Providers Agree on Outcome Measures for Inflammatory Skin Disorders

filling out medical forms
filling out medical forms
Patients and providers agreed that Skindex instruments are important complements to patient global assessments for determining disease burden and severity in clinical practice.

A consensus-building study indicates that patient-reported outcome measures alone fail to capture the full spectrum of patient experience with inflammatory skin disorders. Study results were published in the Journal of the American Academy of Dermatology. Investigators endorsed a combination of patient global assessments (PtGAs) with Skindex instruments or other patient-reported outcome measures (PROMs) of health-related quality of life.

Investigators conducted a series of consensus meetings at the 2018 International Dermatology Outcome Measures annual conference. A modified Delphi process was used to capture consensus on various PtGAs, Skindex instruments, and PROMs for inflammatory skin disorders. Consensus was defined as ≥70% of agreement within the group. Participants included patients with psoriasis, atopic dermatitis, and acne; patient caregivers; dermatologists; non-dermatologist practitioners; patient association representatives; and dermatology association representatives.

A total of 53 stakeholders participated in the consensus meetings, including 24 patients and caregivers. The most-endorsed PtGA (84.6% agreement) was a 5-item PtGA which included an optional checkbox describing current skin disease experience as “worst ever.” Participants agreed that assessing adequacy of treatment response (92%), identifying patient goals (71%), and assessing treatment harm (71%) were the “minimal set” of assessments for clinical practice. In additional, 84% agreed or strongly agreed with a proposed “trajectory measure” that assessed whether skin disease remained the same, improved, or worsened since treatment initiation. A total of 75% of respondents voted that patients should ideally complete the Skindex-16 at their first visit, while the Skindex mini could be used at follow-up visits. The majority of physicians (92%) voted that the feasibility of a PROM was more important than its comprehensiveness, while only 55% of patients valued feasibility over comprehensiveness. In the total group, 72% voted that PROMs were an important means of “[starting] conversations about…disease [impact] between patients and physicians.” When surveyed on combinations of instruments, consensus was not reached on a specific pair. However, 74% and 86% of participants voted that using a Skindex instrument is more important than using a “trajectory measure” or a 5-point PtGA, respectively.

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These data suggest that PtGAs as standalone measures were inadequate in capturing the patient experience with inflammatory skin disorders. The logistics of the implementation of various PROMs in clinical care requires further study. As a noted limitation, PROMs “may be influenced by factors outside of the control of providers and…[subject to] recruitment and response bias.” As such, the standardization of PROMs is necessary prior to their widespread use in clinical practice.

Disclosure: Several study authors declared affiliations with the pharmaceutical industry. Please see the original reference for a full list of authors’ disclosures


Perez-Chada L, Taliercio VL, Gottlieb A, et al. Achieving consensus on patient-reported outcome measures in clinical practice for inflammatory skin disorders [published online September 13, 2019]. J Am Acad Dermatol. doi:10.1016/j.jaad.2019.09.008