Feasibility and Acceptability of Patient-Reported Outcomes Collection in Routine Pediatric Atopic Dermatitis Care.

Feasibility and Acceptability of Patient-Reported Outcomes Collection in Routine Pediatric Atopic Dermatitis Care - PMC Skip to main content An official website of the United States government Here's how you know Here's how you know Search Log in Primary site navigation Search Log in Search PMC Full-Text Archive Search in PMC Journal List User Guide As a library, NLM provides access to scientific literature. Inclusion in an NLM database does not imply endorsement of, or agreement with, the contents by NLM or the National Institutes of Health. Learn more: PMC Disclaimer | PMC Copyright Notice Pediatr Dermatol . Author manuscript; available in PMC: 2026 May 31. Published in final edited form as: Pediatr Dermatol. 2025 May 31;42(6):1176–1178. doi: 10.1111/pde.15972 Feasibility and Acceptability of Patient-Reported Outcomes Collection in Routine Pediatric Atopic Dermatitis Care Hannah R Chang 1, 2, * , Hsing-Jou Su 2, * , Karin Kartawira 2 , Anna Grossberg 2 , Joy Wan 2 Author information Article notes Copyright and License information 1 University of Texas Southwestern Medical School, University of Texas Southwestern Medical Center, Dallas, Texas, USA 2 Department of Dermatology, Johns Hopkins University School of Medicine, Baltimore, Maryland, USA * Contributed equally as co-first authors # Author Contributions: Ms. Chang and Dr. Su contributed equally and are co-first authors. Dr. Wan and Ms. Chang had full access to all of the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis. Dr. Wan conceived and designed the study. Ms. Chang, Dr. Su, and Ms. Kartawira performed data collection. Ms. Chang and Dr. Wan performed data analysis and interpretation. All authors contributed to the drafting and revision of the manuscript. ✉ Corresponding Author: Joy Wan, MD, MSCE, 200 N. Wolfe St., Suite 2107, Baltimore, MD 21287, jwan7@jhmi.edu Issue date 2025 Nov-Dec. PMC Copyright notice PMCID: PMC12353442  NIHMSID: NIHMS2080196  PMID: 40448472 The publisher's version of this article is available at Pediatr Dermatol Abstract Atopic dermatitis (AD) is a common and chronic skin disease that adversely impacts physical, mental, and social health. Because patients’ experience of AD may not correlate with traditional clinician-reported assessments of disease burden, patient-reported outcomes (PROs) are important for understanding the full experience of AD in children and their caregivers. In this pilot study involving 153 children with AD, we found that collecting PROs during routine pediatric AD care is both feasible and acceptable. These findings support future efforts to implement PROs in clinical practice to promote patient-centered care and facilitate shared decision-making. Keywords: atopic dermatitis, eczema, patient-reported outcomes, pediatric dermatology Introduction Atopic dermatitis (AD) is a chronic skin disease that significantly impairs physical, mental, and social health. 1 – 3 As patient-reported disease burden and clinician-assessed measures may not correlate, patient-reported outcomes (PROs)–direct reports by patients about their health without interpretation by anyone else–can provide insight into the full experience of AD in children and caregivers. 4 Despite the availability of many patient-reported outcome measures (PROMs), their use in routine pediatric AD care remains limited. 5 Barriers may include feasibility in busy clinical settings, instrument selection, and burden on patients. Thus, we investigated the feasibility and acceptability of collecting PROMs during routine pediatric AD care and identified patient preferences for future implementation. Methods In this cross-sectional study conducted in an academic pediatric dermatology clinic at Johns Hopkins between June 2023 and May 2024, we recruited children aged 1–17 years old seen for AD. Participants or caregivers provided informed consent and completed Patient-Reported Outcomes Measurement Information System (PROMIS) 6 questionnaires for itch, sleep, anxiety, depression, pain, cognitive function, and global health, along with the Patient-Oriented Eczema Measure (POEM) for AD severity. Caregivers completed questionnaires for children ≤7 years old, while children aged ≥8 years self-reported. Brief surveys assessed participants’ acceptance of PROs in clinical care ( Supplement 1 ). Data were collected using REDCap. Questionnaires were administered via electronic tablets, with an option for remote completion for patients with email or MyChart access. This study was approved by the Johns Hopkins Institutional Review Board. Results Among 166 invited participants, 153 children (median age 4.8 years [range 1–17]) participated, yielding a 92.2% response rate. Most questionnaires (137 [89.5%]) were completed by caregivers ( Table 1 ). The median POEM score was 11 (IQR 5–17.5), indicating moderate AD severity. Caregiver-reported PROMIS ratings for itch, sleep health, sleep disturbance, sleep-related impairment, and global health and self-reported PROMIS rating for itch were significantly worse than population means (data not shown). Table 1. Characteristics of study participants. Characteristic, n (%) N = 153 Relationship of survey respondent to study participant Mother 107 (69.9) Father 26 (17.0) Self (child) 16 (10.5) Grandparent 3 (2.0) Legal guardian 1 (0.7) Sex Male 77 (50.3) Female 76 (49.7) Age, years Median (IQR) 4.8 (2.5–8.8) Min, Max 1, 17 Race Black/African American 73 (47.7) White 47 (30.7) Multi-racial 18 (11.8) Asian 13 (8.5) American Indian/Alaskan Native 1 (0.7) Native Hawaiian/Pacific Islander 1 (0.7) Ethnicity Non-Hispanic 139 (90.9) Hispanic 14 (9.2) POEM Score, median (IQR) 11 (5–17.5) Open in a new tab Abbreviations: IQR, interquartile range; POEM, Patient Oriented Eczema Measure Despite the high response rate overall, only 16.7% (6/36) of those emailed or sent MyChart messages completed surveys at home ( Table 2 ). Most patients (147/153 [96.1%]) completed surveys in clinic. The median patient-estimated completion time was 8 minutes (IQR 5–10), with an actual completion time of 11 minutes (IQR 8–17). Patients perceived the survey as low effort (2 [IQR 1–3] on scale of 1 [no effort] to 5 [huge effort]). Preferences for completing future PROMs were equally divided between in-clinic (49.0%) and at-home (48.3%), with only 2.7% preferring not to complete them. Most participants found the process acceptable (80.0%) and appealing (64.2%), as indicated by selecting “Agree” or “Completely Agree” on a 5-point Likert scale (Completely disagree, Disagree, Neither Agree nor Disagree, Agree, Completely Agree) in response to the statements, “The process of completing patient-reported symptom surveys as part of my child’s/my eczema care is acceptable [or appealing] to me.” Appeal was associated with greater caregiver-reported sleep-related impairment (Mann-Whitney p=0.01) and differences in importance of PROs for peer relationships (Fisher’s exact p=0.02) and life satisfaction (p=0.02) but not with AD severity. Caregivers most commonly ranked itch, general health, life satisfaction, pain, and sleep as the 5 most important PROs, while children most commonly ranked physical activity, general health, life satisfaction, sleep, and cognitive function (data not shown). Table 2. Patient-reported outcomes (PROs) completion characteristics, acceptability and appeal, and patient/caregiver preferences for future PROs evaluations. Characteristic N = 153 PROs completion method, n (%) In clinic, during visit 147 (96.1) At home, prior to visit 6 (3.9) PROs completion time in minutes, median (IQR) Patient-reported estimated completion time 8 (5–10) Actual completion time 11 (8–17) Perceived effort of PROs completion [1=no effort at all, 5=huge effort], median (IQR) 2 (1–3) Acceptability of PROs: “The process of completing patient-reported symptom surveys as part of my child’s/my eczema care is acceptable to me.”, n (%) Completely disagree 1 (0.7) Disagree 1 (0.7) Neither agree nor disagree 27 (18.6) Agree 67 (46.2) Completely agree 49 (33.8) Appeal of PROs: “The process of completing patient-reported symptom surveys as part of my child's/my eczema care is appealing to me.”, n (%) Completely disagree 1 (0.7) Disagree 7 (4.8) Neither agree nor disagree 44 (30.3) Agree 53 (36.6) Completely agree 40 (27.6) Preference for future PROs completion, n (%) In clinic, during visit 71 (49.0) At home, prior to visit 70 (48.3) Never 4 (2.7) Open in a new tab Abbreviations: IQR, interquartile range; PROs, patient-reported outcomes Discussion Our study demonstrates that collecting PROs in pediatric AD care was feasible and acceptable to most patients in an academic setting. The high response rate, 11-minute median completion time, and low effort perception suggest the burden may be manageable. PROs can aid in shared decision-making and may lead to better long-term AD control and treatment satisfaction. 7 , 8 While 80% of participants found PROs collection acceptable, appeal was lower. Although completion method, time, and perceived effort were not associated with appeal, our utilization of eight PROMs may have contributed to lower appeal. As both caregivers and children identified general health, life satisfaction, and sleep as top priorities, more focused collection of PROMs may improve feasibility and appeal. Our study’s limitations include variable timing of survey administration, which could have been before or after the provider encounter to minimize workflow disruption. PROs reported by caregiver proxies may also differ from child-report. PRO collection required a research assistant and tablets, highlighting implementation costs that may not be feasible in some settings. The study was conducted in a subspecialty setting, required informed consent, and excluded non-English speakers, limiting generalizability and suggesting the need for additional resources for broader adoption. Provider perspectives and preferences for PROMs were not evaluated and deserve further study. Nevertheless, our present findings help to inform future efforts to optimize PRO evaluations to promote patient-centered AD care. Supplementary Material Supinfo Supplement 1. Patient-Reported Outcomes Preference Survey NIHMS2080196-supplement-Supinfo.pdf (116.1KB, pdf) Funding: This work was supported by the American Skin Association (J.W.), National Institutes of Health K23AR077629 (J.W.), Pediatric Dermatology Research Alliance Emerging Investigator Research Grant (H.R.C.), and Pediatric Dermatology Research Alliance Research Fellowship (H.J.S). The sponsors of this work played no role in the design of the study, the collection, analysis and interpretation of data, and the writing of the manuscript. Footnotes Declaration of Interests: J.W. has received research and fellowship funding from Pfizer (paid to Johns Hopkins University) and has served as a consultant for Sun Pharmaceuticals (DMSB), Astria Therapeutics, Janssen, and Guidepoint, receiving honoraria. H.R.C., H.J.S., K.K., and A.G. have no conflicts to disclose. IRB status: Approved (IRB00386642) Patient Consent: Informed consent was obtained. Reprint requests: Joy Wan References 1. Shaw TE, Currie GP, Koudelka CW, Simpson EL. Eczema prevalence in the United States: data from the 2003 National Survey of Children’s Health. J Invest Dermatol. 2011;131(1):67–73. doi: 10.1038/jid.2010.251 [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 2. Laughter MR, Maymone MBC, Mashayekhi S, et al. 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The Patient-Reported Outcomes Measurement Information System (PROMIS): progress of an NIH Roadmap cooperative group during its first two years. Med Care. 2007;45(5 Suppl 1):S3–s11. doi: 10.1097/01.mlr.0000258615.42478.55 [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 7. Capozza K, Funk M, Hering M, et al. Patients’ and Caregivers’ Experiences With Atopic Dermatitis-Related Burden, Medical Care, and Treatments in 8 Countries. J Allergy Clin Immunol Pract. 2023;11(1):264–273.e1. doi: 10.1016/j.jaip.2022.10.032 [ DOI ] [ PubMed ] [ Google Scholar ] 8. Snyder AM, Chen SC, Chren MM, et al. Patient-Reported Outcome Measures and Their Clinical Applications in Dermatology. Am J Clin Dermatol. 2023;24(4):499–511. doi: 10.1007/s40257-023-00758-8 [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] Associated Data This section collects any data citations, data availability statements, or supplementary materials included in this article. Supplementary Materials Supinfo Supplement 1. Patient-Reported Outcomes Preference Survey NIHMS2080196-supplement-Supinfo.pdf (116.1KB, pdf) ACTIONS View on publisher site PDF (54.7 KB) Cite Collections Permalink RESOURCES Similar articles Cited by other articles Links to NCBI Databases Follow NCBI NCBI on X (formerly known as Twitter) NCBI on Facebook NCBI on LinkedIn NCBI on GitHub NCBI RSS feed Connect with NLM NLM on X (formerly known as Twitter) NLM on Facebook NLM on YouTube National Library of Medicine 8600 Rockville Pike Bethesda, MD 20894 Web Policies FOIA HHS Vulnerability Disclosure Help Accessibility Careers NLM NIH HHS USA.gov Back to Top

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