Abstract
This qualitative study examines patient-reported outcome measures used in the treatment of patients with acne.
Acne is a common skin condition associated with considerable physical and psychological morbidities, including permanent scarring, social isolation, and depression.1 Patient-reported outcome measures (PROMs) represent a valuable tool to capture the lived experience of persons with acne.2 To inform selection of PROMs used among patients with acne, the objectives of this study were to identify and describe the content captured by existing PROMs.
Methods
In this qualitative study, commonly used PROMs capturing health-related quality of life among patients with acne were identified through previous systematic reviews.3,4 For each PROM, the content of each item and the phrasing (positive [eg, “I like the way my skin looks”], negative [eg, “I don’t like the way my skin looks”], and neutral) were evaluated. Each item was assigned 3 levels of coding (domain, subdomain, and health concepts).5 The coding was informed by the Patient-Reported Outcomes Measurement Information System. Coding was performed by 3 researchers (J.Y., H.A.H., J.S.B.) with iterative development of the codebook, which was repeated until all concepts were comprehensively described with intercoder consensus. Data collection and analysis were performed December 22, 2021, to March 6, 2022, using Microsoft Excel.
Results
Eight acne-specific, 2 dermatology-specific, and 1 generic PROM, including 213 items, were evaluated. Most items had negative phrasing (negative, 172 [80.8%]; neutral, 29 [13.6%]; positive, 12 [5.6%]), with 5 (2.3%) PROMs containing exclusively negative phrasing (Acne Quality of Life Index [Acne-QOLI], Acne Quality of Life [AQOL], Acne Impact on Adult Daily Life [AI-ADL], Cardiff Acne Disability Index, and Skindex-16).
Each item had a mean of 2.47 (median, 2) health concepts, with 70 unique health concepts across PROMs. These health concepts were organized into 19 subdomains with 5 overarching domains (physical well-being, psychological well-being, social well-being, treatment, and vitality) (Table). The most frequently captured domains were psychological well-being (128 [60.1%]), social well-being (46 [21.6%]), and physical well-being (33 [15.5%]). Treatment (5 [2.3%]) and vitality (1 [0.5%]) were infrequently captured; only the EuroQol 5 dimension included vitality.
Table. Domains, Subdomains, and Health Concepts of PROMs for Patients With Acnea.
| Domain | No. of items and subdomains | Health concepts |
|---|---|---|
| Physical well-being (n = 33 items) | 30; Symptom | Bumps, scabs, scars, open comedones, closed comedones, oily, redness, color, itch, sore, pain, sting, discomfort, feel, puffy, swollen, blood, severity, persistence, self-care, daily activities |
| 3; Functioning | ||
| Psychological well-being (n = 128 items) | 95; Body image | Self-confidence, self-consciousness, frustration, embarrassment, satisfaction, concern, worry, bother, feel, like, avoid, photo, appearance, perception, stare at mirror, people staring, dislike, unhappy, cover-up, put down, concentrate |
| 21; Distress | ||
| 5; Depression | ||
| 4; Anxiety | ||
| 2; Skin care | ||
| 1; Anxiety or depression | ||
| Social well-being (n = 46 items) | 15; Social relationship | Social interactions, romantic interactions, friends, family, relatives, influence, clothes, leisure activities, sport, work, school, partner, rejection, affection, outcast, loneliness, sexual difficulties, afraid, bad comments, difficulties, public |
| 11; Social isolation | ||
| 9; Functioning | ||
| 5; Romantic relationship | ||
| 2; Sexual dysfunction | ||
| 2; Romantic or social relationship | ||
| 1; Social media | ||
| 1; Body image | ||
| Treatment (n = 5 items) | 3; Skin care | Adverse effects, improvement, annoyance, time, worry, problem |
| 2; Expectation | ||
| Vitality (n = 1 item) | 1; Overall health | Health |
Abbreviation: PROMs, patient-reported outcome measure.
The PROMs included in the study are the Acne-Q, Acne-Specific Quality of Life Questionnaire, Acne Quality of Life Index, Acne Impact on Adult Daily Life, Acne Quality of Life, Acne Symptom and Impact Scale, Cardiff Acne Disability Index, CompAQ, Dermatology Life Quality Index, EuroQol 5 dimension, and Skindex-16.
Differences were observed in the relative domains included in each PROM, with the Acne-Specific Quality of Life Questionnaire, CompAQ, and Dermatology Life Quality Index most comprehensively covering the identified domains (Figure). Some PROMs, such as the Acne-Q (87.7% [64 of 73 items]), Acne-QOLI (85.7% [18 of 21 items]), and AI-ADL (78.6% [11 of 14 items]), had a relative emphasis on psychological well-being, whereas the AQOL (91.7% [11 of 12 items]) had a relative emphasis on social well-being.
Figure. Content Analysis of Individual PROM Questionnaires for Patients With Acne.
Abbreviations: AcneQoL, Acne-Specific Quality of Life Questionnaire; Acne-QOLI, Acne Quality of Life Index; AI-ADL, Acne Impact on Adult Daily Life; AQOL, Acne Quality of Life; ASIS, Acne Symptom and Impact Scale; CADI, Cardiff Acne Disability Index; CompAQ; DLQI, Dermatology Life Quality Index; EQ-5D, EuroQol 5 dimension; PROM, patient-reported outcome measures.
Discussion
This qualitative study characterizes the content included in PROMs for patients with acne. Although many common themes were identified, notable differences existed between PROMs, which may alter PROM selection depending on clinical context. For instance, if the focus is on psychological well-being, the Acne-Q, Acne-QOLI, and AI-ADL may be most applicable, whereas if the focus is on social well-being, the AQOL may be most applicable. The Acne-Specific Quality of Life Questionnaire, CompAQ, and Dermatology Life Quality Index encompassed the broadest set of domains, which may be valuable in a general clinical setting.
Notably, these PROMs predominantly include negative phrasing. Although negative phrasing may help identify patient difficulties and concerns, it may adversely affect patients’ understanding of acne and themselves.6 Phrasing needs to be carefully considered during PROM development and selection. The qualitative design of this study has limitations, including challenges with classifying items covering multiple health concepts, which was mitigated through review of each item by multiple reviewers and iterative codebook development.
Patient-reported outcome measures provide valuable information to understand the lived experience of persons with acne, which can be used to measure what matters most to patients in clinical trials and to individualize treatment in clinical practice. This content analysis provides a framework to guide clinicians and researchers in selecting the PROM that is most relevant to their specific needs. Further studies need to investigate how phrasing and heterogeneity of PROM domains may impact the usefulness of PROMs for patients with acne.
References
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