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. Author manuscript; available in PMC: 2026 Aug 25.
Published in final edited form as: J Am Acad Dermatol. 2025 Aug 25;93(6):1499–1508. doi: 10.1016/j.jaad.2025.08.041

Establishment of standardized definitions and a core set of outcome characteristics following hidradenitis suppurativa surgery developed by an expert Delphi consensus

Linnea L Westerkam 1, Hessel H van der Zee 2, Falk G Bechara 3, Stephanie Goldberg 4, Gregor B Jemec 5,6, Julie Caffrey 7, Abigail Chaffin 8, Ernest S Chiu 9, Lynn Damitz 10, Steven Daveluy 11, Amit Garg 12, Ralph George 13, Philippe Guillem 14,15, Iltefat H Hamzavi 16, Paul G Hazen 17, Barbara Horvath 18, John R Ingram 19, Joslyn S Kirby 20,21, Lukasz Matusiak 22, Lauren AV Orenstein 23, Dennis P Orgill 24, Venessa Pena-Robichaux 25, Maurizio Podda 26, Errol Prens 2, Barry Resnik 27, Ditte Marie Lindhardt Saunte 5,6, Drew K Saylor 28, Linnea Thorlacius 5, Bente Villumsen 29, Allard RJV Vossen 2, Christopher J Sayed 30
PMCID: PMC12575009  NIHMSID: NIHMS2107639  PMID: 40865729

Abstract

Background:

Hidradenitis suppurativa (HS) is a chronic inflammatory skin condition often requiring surgical intervention for definitive treatment. Previous studies evaluated post-surgical outcomes, but no standardization exists for collection and nomenclature for HS surgical outcomes.

Objective:

To characterize and define surgical outcome terminology.

Methods:

A modified Delphi protocol was used to reach consensus on data to collect and terms to describe outcomes following HS surgical procedures. A five-member steering committee created preliminary definitions and surveys which were distributed via Qualtrics to a group of international HS experts. A nine-point Likert scale was used and a score of at least 7 was needed for an item to reach agreement.

Results:

Twenty-five dermatologists and general and plastic surgeons participated in the Delphi study. Following two rounds of surveys and feedback, the consensus terminology to describe outcomes included surgical site and regional persistence and progression. Consensus was also reached on key features to report as part of each outcome.

Limitations:

Limitations include narrow scope and small number of participants from limited geographical areas.

Conclusion:

Surgery persistence and progression definitions were agreed upon by a group of international HS experts. This consensus is a first step towards standardizing terminology and reporting for HS surgical outcomes.

Keywords: hidradenitis suppurativa, surgery outcomes, Delphi consensus

Capsule summary:

• No consensus exists for standardizing data collection and nomenclature for hidradenitis suppurativa surgical outcomes.

• This Delphi consensus is an important step in standardizing hidradenitis suppurativa surgical outcome reporting and lays the framework for comparing outcomes in future hidradenitis suppurativa surgical studies.

Introduction

Hidradenitis suppurativa (HS) is a chronic inflammatory skin condition characterized by recurrent inflammatory nodules and abscesses with secondary scarring and tunnel formation primarily in intertriginous areas. Patients often require both medical and surgical interventions to optimize disease management.1 Medical treatment options include antibiotics, hormonal therapy, and immunomodulators.23 Surgery is needed to remove tunnels, most often via excisions or deroofing procedures. Excisional procedures remove HS lesions down to the subcutaneous fat, with some margin of surrounding normal appearing skin. Deroofing procedures use a tissue sparing technique to primarily remove the overlying HS affected tissue with wound base debridement. Deroofing wounds are typically healed via second intention whereas excisional wounds may heal by secondary intention or may be closed via primary closure, graft, or flap.46

A Delphi consensus in 2023 defined surgical procedures commonly used for HS management but did not define surgical outcomes.5 Now that HS procedures have been defined in the literature, there is an opportunity to more clearly measure outcomes based on the types of procedures performed. As a result, there is now an increasing need for well-defined surgical outcomes with standardized terminology.

Given that HS is chronic and often progresses to involve previously unaffected skin and body regions over time, previously treated surgical sites and body regions can become affected again in the future, even when all disease present at the time of the procedure was removed. It is also possible that not all of the affected tissue in a body region is removed at the time of a procedure due to patient preference, extensive nature of the disease preventing complete removal with a single procedure, or affected tissue that is unrecognized at the time of the procedure. Historically, the terms “recur” or “disease recurrence” have been used to describe the presence of disease at or near a surgical site directly after time of surgery or subsequently. However, this term generally does not differentiate disease present immediately following the procedure from the development of new disease activity sometime after the procedure. “Recurrence” has not been consistently defined across studies and no consensus statement exists for what this term indicates for HS.725 Due to the historical inconsistency of this term, other terms, such as “persistence” and “progression” may be better suited for a chronic inflammatory skin condition. Numerous reports evaluate surgical procedures and outcomes for patients with HS, but standardized terminology does not exist between studies; none have yet to fully characterize, define, and standardize HS surgical recurrence and outcome measures.725

Documenting the presence of disease near a prior surgical site may also be inadequate to fully characterize the outcome from a procedure, but there is not consistency on what additional features to record. For example, excision of a 100 cm2 area of draining tunnels and scars may be followed by a 2 cm2 area of disease activity years later. A dichotomous response measure based solely on the presence of limited disease activity does not fully capture the overall positive impact the procedure may have had on the patient. Thus, developing a standardized set of data to record when assessing disease activity after procedures is important in developing more comprehensive outcome measures. The goal of this project is to develop expert consensus on HS surgical outcome nomenclature and data collection to allow for uniform outcome reporting in future HS trials involving surgery. This study standardizes terminology and subsequently outlines how this terminology may be applied to data collection in future studies (Table 1). The project will help to inform the HS core outcome set being developed by the Hidradenitis Suppurativa Core Outcomes Set International Collaboration (HiSTORIC, https://www.c3outcomes.org/historic). One of the six core domains is ‘Progression of Course’, divided into ‘Time to Recurrence’ for surgical trials and ‘Flare Frequency’ for medical trials.26 However, it was difficult to define ‘Recurrence’ because the term encompasses both disease persistence and progression.

Table 1:

HS disease persistence and progression definitions and associated post-surgical features to report

Round 1 score Round 2 score Provisional definition Final definition or feature
Surgical outcome term
Surgical site persistence 7.72 NA* Continued visible or palpable hidradenitis lesions (inflamed nodule, abscess, or draining/inflamed or nondraining tunnel) abutting or involving the surgical site at time of surgery or within 14 days of complete wound healing.
*This could be due to intentionally incomplete removal of disease (ie staged or partial procedures) or related to disease that was not fully removed as intended.
NA*
Regional persistence 7.88 NA* Continued visible or palpable hidradenitis lesions (inflamed nodule, abscess, or draining/inflamed or non-draining tunnel) involving the treated body region that do not directly involve the surgical site at the time of surgery.
*This may be an expected outcome when only specific lesions are targeted.
NA*
Surgical site progression 6.92 7.25 Visible or palpable hidradenitis lesions (inflamed nodule, abscess, or draining/inflamed or non-draining tunnel) abutting or involving surgical site that occurs for the first time more than 14 days after complete wound healing.
*Complete wound healing defined as whichever occurs sooner for either the patient reporting scar completely covering the wound or based on physical exam or photograph demonstrating complete healing as assessed by a clinician/investigator.
Visible or palpable hidradenitis lesions (inflamed nodule, abscess, or draining/inflamed or non-draining tunnel) abutting or involving surgical site that were not present at the time of surgery and originate more than 14 days after complete wound healing.
Regional progression 8.12 NA* Visible or palpable hidradenitis lesions (inflamed nodule, abscess, or draining/inflamed or nondraining tunnel) involving the treated body region that were not present at the time of surgery and do not involve or abut the surgical scar. NA*
Proposed features
Time elapsed since surgical intervention 8.2 NA* Time elapsed since surgical intervention NA*
Time from surgery to first report of persistence/progression 7.8 NA* Time reported in days or weeks from surgery to first report of persistence/progression (surgery performed on day 0); this may be physician-identified by examination or photograph OR patient-reported only NA*
Type of lesion present in persistence or progression 7.4 NA* Nodule, abscess, draining tunnel, non-draining tunnel (multiple options can be chosen) NA*
Intervention to address surgical site persistence or progression 7.2 NA* Multiple pick list containing 1) no intervention 2) intralesional triamcinolone 3) addition of short-term medication intervention (90 days medical management); specify medication 6) incision and drainage 7) excision 8 deroofing procedure 9) other (specify); date of intervention recorded NA*
Persistence or progression resolution 6.8 7.04 Has site of persistence or progression resolved at most recent follow-up? Y/N: If present, surface area below How has the area of persistence/progression changed since occurring? Completely resolved, partially improved, unchanged, enlarging. If completely resolved, provide an approximate date ______.
Area of progression or persistence (and at time of surgery) 6.88 1. 7.09
2. 7.04
3. 7.00
Surface area in cm2 of skin affected by progression/persistence at most recent follow-up 1. Total surface area of wound(s) at time of procedure in cm2
2. If persistent disease is known to be present immediately following a partial lesional/regional procedure, provide an estimate of total surface area in cm2
3. Total surface area of lesion(s) in cm2 that has persisted/progressed at most recent follow-up.

Abbreviation: NA, not applicable

*

Agreement reached in first round

Methods

A steering committee of HS experts made up of dermatologists and general surgeons from the United States and Europe defined terms for documenting HS persistence and progression, as well as secondary features to document, following HS surgery. The Delphi study was completed in two rounds between September 2023 and March 2024. Dermatologists, general surgeons, and plastic surgeons, identified by the steering committee, from the United States and Europe with HS surgery expertise were invited to participate in the study. Surveys were distributed via email and conducted on Qualtrics. This study was approved by the University of North Carolina Institutional Review Board; participants provided informed consent prior to survey completion and survey responses were anonymized.

The steering committee reviewed the current literature and drafted definitions for surgical site persistence, regional persistence, surgical site progression, and regional progression. A draft outline of other features to collect for these surgical outcomes was also created, which included: time since surgery, time until first report of persistence/progression and its current resolution status, lesion type, area of surgery site and area of progression/persistence, and intervention to address persistence or progression.

A modified Delphi consensus protocol was used in this study (Figure 1). A 9-point Likert scale was used to determine the level of agreement for survey items: 1–3 indicated disagree, 4–6 indicated neither agree or disagree, and 7–9 indicated agree. The a priori definition of consensus was a score of at least 7 for the item. Free-text space was provided for participants to provide additional responses. Feedback from the first round was shared with all participants who were invited to take the survey, and the steering committee updated definitions and items that did not reach agreement, based on the free text responses received, for the second round of the Delphi study. Following the second round of the survey, all items met the a priori consensus definition.

Figure 1:

Figure 1:

Modified Delphi Consensus Method Used

Results

This study was completed between September 2023 and March 2024. Twenty-five clinicians were invited to participate in the study and included 18 dermatologists, 4 plastic surgeons, and 3 general surgeons. Twenty-five participated in round 1 and 24/25 participated in round 2. The provisional definitions and subsequent iterations can be found in Table 1 and supplemental material provides photographic examples of how these definitions can be applied.

Surgical site persistence, regional persistence, and regional progression definitions reached agreement in the first round, with mean scores of 7.72, 7.88, and 8.12, respectively. Surgical site progression received an average score of 6.92 in the first round, so did not reach agreement. The definition was revised to reflect feedback received to further clarify time of onset of inflammatory lesions after a surgical intervention. The definition reached agreement after round 2 with an average score of 7.25. Location of disease activity over time using these definitions is illustrated in figure 2.

Figure 2: Surgical persistence/progression.

Figure 2:

*Complete wound healing defined as lack of inflammation or obvious lesions (nodules, abscesses, and draining or non-draining tunnels) for at least two weeks following apparent wound healing; new activity would represent de novo lesions

The following proposed features to report alongside persistence or progression were agreed upon following the round 1 survey: time elapsed since surgical intervention (8.2), time from surgery to first report of persistence/progression (7.8), type of lesions present in persistence/progression (7.4), and intervention to address persistence or progression (7.2). The following items did not reach consensus: persistence/progressions site resolution at follow up (6.8) and area of progression/persistence (and at time of surgery) (6.88). The site resolution item was revised to account for varying degrees of improvement or worsening. Area of progression/persistence was split into three separate items for further classification: 1) area of the lesion(s) at time of procedure, 2) area of known persistent disease at time of procedure, and 3) area of persistent/progressed lesion. These remaining items met consensus in the second round. Figure 3 shows a sample template for a case report.

Figure 3:

Figure 3:

Sample template for case report

Discussion

Through two rounds of a modified Delphi process, expert consensus defined HS surgical outcomes including disease persistence and progression, as well as key secondary features. This standardized terminology paired with the recently standardized definitions for surgical procedures will allow for uniform data collection prior to and following surgical procedures. The use of this standardized data will allow surgical outcomes to be compared between different approaches, helping the community of HS surgical providers identify and refine optimal approaches. Examples applying these definitions of persistence and progression are provided in supplemental material.

A few areas of important debate occurred during the Delphi process. First, the time point at which to differentiate persistence versus progression was set at 14 days following complete wound healing. The time to complete wound healing can be difficult to pinpoint precisely, but it was felt that this can be relatively well estimated by providers evaluating wounds in person or by photographs. Alternatively, patients can also provide estimates based on when wound exudate and the need for bandaging ceases in most cases. Lack of inflammation or obvious lesions (nodules, abscesses, and draining or non-draining tunnels) for at least two weeks following apparent wound healing would suggest that affected skin was completely removed by the procedures and new activity would represent de novo lesions. Given some uncertainty around the exact timing of complete healing it was felt that a minimum of a two-week window was needed to ensure stable wound closure and describing disease activity as “persistent” beyond this time may inappropriately suggest that the affected tissue at time of surgery was not fully removed as intended.

A second area of discussion centered on recording surface area of involvement since this can be difficult to accurately measure and delineate. While this can present challenges, it was felt to be critical to assessing the extent to which a procedure reduces the burden of disease. Regularly shaped wounds can be estimated with a simple length and width measurement. Irregularly shaped wounds can be divided into sections with the sum of the sections added, and multiple separate areas can similarly be added together for a total surface area affected. Software tools that can analyze images of HS skin and assess area of involvement may aid in this process; similar tools exist for measuring chronic wounds but have not been validated in HS.25

An additional consideration in recording surface area was to include the area of affected tissue prior to the procedure, how much affected area was known to be persistent if, intentionally, not all affected skin in the region was cleared, and how much affected skin was present at most recent follow-up. This allows for clearer understanding of how much improvement can be attributed to the procedure.

The presence of persistence and progression of the surgical site and region are not mutually exclusive. It is possible that following a complete lesional excision, that both persistent disease that was not treated at the time of the procedure may remain and de novo disease might later develop at the edge of the surgical site more than two weeks after healing. In such an instance, both regional persistence and surgical site progression would be documented.

Limitations to this study include the narrow focus of the Delphi consensus, limited applicability across conditions, and small number of participants (5 steering committee members and 25 survey participants). Most participants were from the United States or Europe, with minimal participation of clinicians from other geographical regions.

Future steps include assessing the implementation and reliability of the definitions and features reached in this consensus process in future studies. Standardizing surgical outcome nomenclature and data collection across HS studies lays a foundation on which more specific outcome measures can be developed for the HiSTORIC ‘Progression of Course’ outcome domain, for use in surgical HS trials. For example, surgical site persistence in the case of planned complete lesional excision would suggest the disease was inadvertently treated incompletely at the time of surgery, whereas surgical site persistence following a partial regional removal would be expected. Secondary features will also be important for assessing improvement following procedures. Whereas “recurrence” alone could be inferred to indicate treatment failure, recording a substantial reduction in affected surface area of disease following procedures would still indicate an overall improvement, especially if the persistence/progressive lesion resolves without further procedural intervention. Previously reported physician reported outcome measures such as the modified HS-LASI, HASI, and IHS4 assessments may be useful in assessing improvement following procedures but incorporating features of persistent and progressive disease will provide a more comprehensive evaluation of surgical outcomes.2730

This Delphi consensus exercise represents an important step in standardizing HS surgical outcomes reporting. By using these definitions and features of persistence and progression, future studies reporting different surgical techniques will be more easily compared, and systematic reviews and meta-analyses should encounter less heterogeneity in surgical outcomes. Ultimately, this framework is intended to encourage more research on HS surgery, leading to improved surgical care and access for people living with HS.

Supplementary Material

Supplemental Material: https://data.mendeley.com/datasets/3p8k8y8zd2/1

Funding source:

National Institute of Arthritis, Musculoskeletal, and Skin diseases grant 1R21AR075996

Footnotes

Conflicts of interest:

LLW, ESC, LD, RG, DPO, DKS report no conflicts of interest.

FGB received honoraria for participation in advisory boards, in clinical trials, and/or as a speaker from AbbVie, Acelyrin, Boehringer Ingelheim, Celltrion, Dr. Wolff, Incyte Corporation, Janssen Cilag, Merck, Mölnlycke, MoonLake, Novartis, Sanofi, Sitala, and UCB.

SG reports advisory work with UCB and Novartis.

GBJ reports speaking engagements with Novartis, speaking engagements with and funding from UCB, advisory work and stipend as Editor-in-chief of Dermatology. He is advisor and/or investigator for Abbvie, Boehringer Ingelheim, ChemoCentryx CSL Behring, Henlez, InflaRx, Incyte, Novartis, UCB Pharma, UNION Therapeutics and serves/has served on advisory boards for Kymera Therapeutics, MC2, and Viela Bio. He is co-copyright holder of HiSQOL, Investigator Global Assessment and Patient Global Assessment instruments for HS. He is a founding member of the EHSF, GHiSA, HISTORIC, and the CHORD-COUSIN Collaboration (C3).

HHVDZ reports speaking engagements with Novartis, UCB, and Abbvie.

JC reports advisory work as an appointed member of the Maryland Board of Physicians.

AC reports speaking engagements and advisory work with Urgo Medical North America and Aroa Biosurgery.

SD reports speaking engagements with Abbvie, UCB, and Novartis, advisory work with Abbvie, UCB, and Novartis, and receives funding from Pfizer, Abbvie, UCB, and Novartis.

AG reports advisory work with AbbVie, Boehringer Ingelheim, Incyte, Insmed, Novartis, Pfizer, Sonoma Biotherapeutics, UCB, and Union Therapeutics, and receives honoraria.

PG received honoraria from AbbVie, Novartis, and UCB Pharma as a consultant, financial help from AbbVie, Novartis, UCB Pharma, and Inresa for attending medical and scientific meetings, and provided lectures for AbbVie, Brothier, Cicaplus, Coloplast, Inresa, and Novartis.

PGH reports speaking engagements with Abbvie.

IHH is a consultant and investigator for Abbvie, Pfizer, Incyte, UCB, Boerhinger Ingelheim, Sonoma, Union Therapeutics, Novartis, Jansen, Avita, Galderma, Vimela, and Almirall.

BH reports fees from Janssen-Cilag (Advisory Boards, Educational grants, Consultations, Investigator Initiative Studies), AbbVie (Advisory Boards, Educational grants, Consultations, Investigator Initiative Studies), Novartis Pharma (Advisory Boards, Consultations, Investigator Initiative Studies), UCB Pharma (Advisory Boards, Consultations), Leo Pharma (Consultations), Solenne B.V. (Investigator Initiative Studies), Celgene (Consultations, Investigator Initiative Studies), Akari therapeutics (Consultations, Investigator Initiative Studies), Philips (Consultation), Roche (Consultation), Regeneron (Consultation) and Sanofi (Consultation), all contracts are reviewed and signed by the Board of Directors and all fees were paid to the institution.

JRI reports speaking engagements with Novartis, speaking engagements with and funding from UCB, advisory work and stipend as Editor-in-Chief of the British Journal of Dermatology and an authorship honorarium from UpToDate. He is a consultant for Abbvie, Boehringer Ingelheim, ChemoCentryx, Citryll, Novartis, UCB Pharma, and UNION Therapeutics and has served on advisory boards for Insmed, Kymera Therapeutics, and Viela Bio. He is co-copyright holder of HiSQOL, Investigator Global Assessment and Patient Global Assessment instruments for HS. His department receives income from copyright of the Dermatology Life Quality Instrument (DLQI) and related instruments. He is Chief Investigator of H-STRONG, the UK-Irish Hidradenitis Suppurativa Treatment Register and Treasurer of the CHORD-COUSIN Collaboration (C3) dermatology outcomes consortium.

JSK: Employee of Incyte Corporation; Advisory Board: AbbVie, Incyte, Novartis, UCB; Consultant: AbbVie, Alumis, DermTech, Guidepoint, Incyte, Insmed, Janssen, Moonlake, Novartis, UCB.

LM reports speaking engagements with Novartis, UCB, and Abbvie and advisory work with Novartis. He receives funding from Novartis, UCB, INCYTE, Infla-Rx, and Acelyrin.

LAVO reports advisory work with UCB and Novartis and receives funding from Pfizer. She is a member of the Hidradenitis Suppurativa Foundation board and Associate Editor for the journal Dermatology.

VPR reports advisory work with Osquo.

MP received honoraria from AbbVie, Beiersdorf, Bristol Myers Squibb, CSL Behring, Galderma, Janssen-Cilag, Leo Pharma, L’Oreal, Novartis, MSD, and UCB for advisory board and speaker services and his department received grants from AbbVie, Boehringer Ingelheim, Eli Lilly, Galderma, Incyte, Janssen-Cilag, InflarRX, Leo Pharma, Novartis, MSD, UCB, Regeneron, Sun Pharma and the Federal Joint Committee (G-BA) for investigator services.

EP reports advisory work with UCB and Novartis and receives funding from MSD.

BR reports speaking engagements with Abbvie and Novartis.

DMLS reports speaking engagements with Novartis, UCB, Abbvie, Leo Pharma, and Jamjoom Pharma, advisory work with Janssen, UCB, Novartis, Sanofi, Abbvie, and receives funding from Leo Pharma and Moberg.

LT reports speaking engagements with UCB.

BV reports speaking engagements with Novartis and advisory work with Boehringer Ingelheim, Novartis, and UCB.

ARJVV reports speaking engagements with Novarits.

CJS reports personal fees for speaking for Abbvie and Novartis and consulting for Abbvie, Novartis, UCB, Sanofi, Sonoma Biotherapeutics, Astrazeneca, Incyte, and Alumis. Fees have been paid to his institution for work as an investigator for Abbvie, Novartis, UCB, Incyte, InflaRx, and Chemocentryx, and for work as a consultant for UCB, InflaRx. He a directing member of the Hidradenitis Suppurativa Foundation and a member of the European HS Foundation.

IRB approval status: Approved by the UNC IRB (#23–1914)

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