Abstract
Introduction
The Hurley staging system is a grading system utilized to measure hidradenitis suppurativa (HS) severity. Teaching patients to grade the severity of HS may aid in the accuracy of self-reporting for research and clinical purposes. Thus, this study aimed to determine the utility of a Hurley stage learning module (HSLM) for participants to grade images of HS.
Methods
An anonymous survey was distributed online between October 2021 and January 2022. Participants completed a 5-min HSLM and a 9-item Hurley staging quiz with varying Fitzpatrick skin tones and HS severity. Comparative statistics were completed using t tests. p value of <0.05 was considered significant.
Results
Majority of participants were female (95.2%, 263/276) and white (81.5%, 225/276). In terms of the percentage of quiz questions correct: 77.9% of respondents graded the Hurley stage 1 images correctly, 79.3% for Hurley stage 2, and 100% for Hurley stage 3. There was a significant difference in confidence of rating Hurley stage for any image (3.66 ± 1.18 vs. 4.39 ± 0.83; p < 0.0001) and own Hurley stage (3.90 ± 1.19 vs. 4.54 ± 0.81; p < 0.0001) pre- and post-HSLM.
Conclusion
An HSLM provides high level of accuracy and increased participant confidence to grade their own disease and images of HS. An HSLM is an effective, cost-efficient, and valuable tool to facilitate clinical and survey research by allowing patients to report disease severity with increased confidence.
Keywords: Hidradenitis suppurativa, Hurley stage, Patient education
Introduction
Hidradenitis suppurativa (HS) is a chronic inflammatory condition presenting with recurrent painful abscesses, nodules, and progression to scars and tunnels [1]. The Hurley staging system is a widely used grading system utilized by both researchers and physicians to objectively measure a patient’s HS severity based on the extent of involvement of abscesses, sinus tracts, and scarring [2]. Although Hurley stages are not commonly used by patients, teaching patients to grade how advanced their HS condition is may aid in the accuracy of self-reporting for research and clinical purposes. In this study, we aimed to determine the utility of a Hurley stage learning module (HSLM) for participants to confidently assess their own HS severity.
Methods
An anonymous electronic Redcap survey was distributed with permission through online social media HS support groups between October 2021 and January 2022 to recruit participants. Participants completed an approximately 5-min HSLM with written descriptions and images depicting the clinical findings of HS of each distinct Hurley stage including the presence or absence of nodules, abscesses, scarring, and sinus tracts. The images used in the HSLM included all three Hurley stages, 2 anatomical locations (inframammary and axillary), and varied skin tones (light, medium, and dark). Participants were subsequently asked to grade the Hurley stages of images in a 9-item quiz (correct answers for Hurley stages were determined by two board-certified dermatologists who are HS specialists, V.Y.S. and J.L.H.). Of note, the images used in the post-HSLM quiz were different than in the HSLM and varied in skin tone and HS severity (from Hurley 1 to Hurley 3). The HSLM was developed by HS experts (V.Y.S. and J.L.H.) and patient advocate leaders (B.B. and D.F.); the images chosen were representative of various anatomical locations and included a spectrum of skin pigmentation. Genital lesion photos were avoided due to social media deployment. Comparative statistics were completed using t tests with a p value of <0.05 considered significant to determine differences based on sex, age, disease duration, and primary HS provider.
Results
There were a total of 276 participants who completed both the HSLM and the post-module quiz. Most participants were female (95.2%, 263/276) and white (81.5%, 225/276) with a dermatologist as their primary provider for their HS (77.7%, 143/184). In terms of the percentage of quiz questions correct: 77.9% of respondents graded the Hurley stage 1 correctly, 79.3% for Hurley stage 2, and 100% for Hurley stage 3. Of Hurley stage 1 and 2 images, the average correct response rate was 86% for light and medium skin tones, and 67% for dark skin tones.
Before the HSLM, 9.7% (27/276) of respondents reported they had Hurley stage 1, 48% (133/276) reported Hurley stage 2, 39% (108/276) reported Hurley stage 3, and 2.9% (8/276) reported that they did not know. After the HSLM 11% (30/276) of respondents reported they had Hurley stage 1, 56% (155/276) reported Hurley stage 2, 33% (91/276) reported Hurley stage 3, and 0% (0/276) reported that they did not know (shown in Fig. 1).
Fig. 1.
Pre- and post-Hurley stage learning module assessment results.
There was a significant difference in respondent’s confidence on a 5-point Likert scale of rating Hurley stage for any image (3.66 ± 1.18 vs. 4.39 ± 0.83; p < 0.0001) and own Hurley stage (3.90 ± 1.19 vs. 4.54 ± 0.81; p < 0.0001) pre- and post-HSLM (Fig. 1). After the HSLM, participants demonstrating confidence in identifying their own Hurley stage improved from 75% (N = 208) to 95% (N = 261). Participants confidence in rating Hurley stage for any image improved from 65% (N = 182) to 92% (N = 254). Female participants demonstrated a significantly higher rate of confidence in their own Hurley stage compared to men (p = 0.003). Participants younger than 40 years old were found to have significantly higher confidence in rating their own images after the HSLM compared to participants older than 40 (p = 0.047). There were no significant differences in participants’ confidence in rating their own Hurley stage or that of images based on main HS provider (including dermatologists or primary care providers), age, or disease duration.
Discussion
Our results highlight that a short HSLM provides a high level of accuracy and increased participant confidence to assign a Hurley stage to their HS. After the HSLM learning module, 92% of participants agreed that they could confidently self-grade their Hurley stage. Hurley Stage 3 images demonstrated the highest accuracy of participant answers (100%). The trend Hurley stage 1 and 2 images with darker skin tones having a lower average correct response suggests that skin of color HS images may be harder for patients to grade. This finding is potentially due to the skin tone of the quiz participant, as the majority of participants in this study identified as white. This highlights the need to further assess HSLMs in more diverse participant groups and potentially focus training on mild/moderate Hurley stages in richly pigmented skin tones.
Previous studies have shown that patient self-reporting without an HSLM may not accurately reflect objective clinical findings, but rather the patient’s subjective experiences [3]. Our study shows that the utilization of an HSLM may improve the accuracy of patient self-reporting Hurley stage. The anonymous nature of the survey limited this study as it did not allow for verification of a patient’s own Hurley staging by a physician. Further limitations of the study include the intrinsic selection bias of surveys targeting participants that are more likely to have access to disease education; in this case, participants are actively engaged in HS-related social media content, as well as the inability to stratify results to patient education level or race. Future directions include validating respondent-reported Hurley stages with physician assessment after completion of HSLM. HSLMs may have utility in many settings including training patients to accurately assess Hurley stage for the purpose of clinical trial pre-assessment and anonymous survey-based studies.
Acknowledgments
We would like to thank the members of HS support groups for their participation and distribution of the anonymous Hurley Stage Learning Module survey, including HS Connect, Hope for HS, and Hidradenitis Suppurativa Warriors.
Statement of Ethics
This study was exempted by the University of Arkansas for Medical Sciences Institutional Review Board review, IRB: 273421. Written informed consent to participate was not directly obtained but inferred by completion of the questionnaire.
Conflict of Interest Statement
Dr. Shi is on the board of directors for the Hidradenitis Suppurativa Foundation; is a stock shareholder of Learn Health; and has served as an advisory board member, investigator, speaker, and/or received research funding from Sanofi Genzyme, Regeneron, AbbVie, Eli Lilly, Novartis, SUN Pharma, LEO Pharma, Pfizer, Incyte, Boehringer Ingelheim, Aristea Therapeutics, Menlo Therapeutics, Dermira, Burt’s Bees, Galderma, Kiniksa, UCB, Target-PharmaSolutions, Altus Lab/cQuell, MYOR, Polyfins Technology, GpSkin, Skin Actives Scientific, and the National Eczema Association. Dr. Hsiao is on the board of directors for the Hidradenitis Suppurativa Foundation and has served as a consultant for AbbVie, Aclaris, Boehringer Ingelheim, Incyte, Novartis, UCB; as a speaker for AbbVie; as an investigator for Amgen, Boehringer Ingelheim, and Incyte. Authors Fixsen and Brooks are cofounders of HSConnect, a non-profit organization which has received funding from Novartis, UCB, Inctye, Sanofi, and Acelyrin. De, Dagenet, Shih, Park, and Tran have no disclosures.
Funding Sources
This study was not supported by any sponsor or funder.
Author Contributions
All authors 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. Study concept and design: Shi, Hsiao, and Tran. Acquisition of data: De, Shih, Brooks, and Fixsen. Analysis and interpretation of data: Shih, De, Dagenet, and Park. Drafting of the manuscript: De, Dagenet, Shih, and Park. Critical revision of the manuscript for important intellectual content: Shi, Hsiao, Tran, Brooks, and Fixsen. Statistical analysis: Shih, De, and Dagenet. Administrative, technical, and material support: Shi, Hsiao, Brooks, and Fixsen. Study supervision: Shi, Hsiao, and Tran.
Funding Statement
This study was not supported by any sponsor or funder.
Data Availability Statement
The data that support the findings of this study are not publicly available due to reasons of sensitivity but are available from the corresponding author V.Y.S. upon reasonable request.
References
- 1. Alikhan A, Lynch PJ, Eisen DB. Hidradenitis suppurativa: a comprehensive review. J Am Acad Dermatol. 2009;60(4):539–63; quiz 562-3. [DOI] [PubMed] [Google Scholar]
- 2. Hurley HJ. Axillary hyperhidrosis, apocrine bromhidrosis, hidradenitis suppurativa and familial benign pemphigus. In: Surgical approach. Marcel Dekker Inc; 1996; p. 623–45. [Google Scholar]
- 3. Krajewski PK, Marrón SE, Tomas Aragones L, Gilaberte-Calzada Y, Szepietowski JC. Self-reported hidradenitis suppurativa severity: is it useful for clinical practice? Dermatol Ther. 2022;12(4):899–909. [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.
Data Availability Statement
The data that support the findings of this study are not publicly available due to reasons of sensitivity but are available from the corresponding author V.Y.S. upon reasonable request.