Self-management-competency as a new target in Hidradenitis suppurativa care

Abstract

Background: Hidradenitis suppurativa affects approximately 1% of the population.

Objective: Highlighting the relevance of self-management-competency as a new therapeutic target.

Method: 258 patients from the ‘Epidemiology and Care in Acne inversa (EpiCAi)’ project were included in the study. Disease burden was measured by patient-rated questionnaires in terms of disease activity, pain, quality of life, depression and insomnia and correlated with the domains of the health education impact questionnaire (heiQ) measuring self-management-competency.

Results: 66 male (25.6%) and 192 female (74.4%) patients, with a mean age of 40.3 ± 10.24 years were included. Mean scores of pain on the numeric rating scale (NRS), Dermatology Life Quality Index (DLQI) and Hospital Anxiety and Depression Scale (HADS) were 5.11 ± 2.68, 11.35 ± 7.79 and 13.71 ± 7.57, respectively. The Insomnia severity index (ISI) showed a mean of 9.58 ± 5.76. The HADS has the highest increased total risk across all heiQ domains. With respect to the heiQ domains, the highest exposure can be attributed to improving constructive attitudes and approaches as well as decreasing emotional distress.

Conclusion: There is a clear association of self-management-competency with overall disease burden, which underlines the need for psychoeducational support. This study provides ideas to develop new possible strategies of care.

Keywords:

• Hidradenitis suppurativa
• psychoeducation
• quality of life
• care
• self-management

Authors’ contributions

C.M., M.S. drafted the manuscript and designed the figures with K.H. K.H. performed the analysis. PS and SG were involved in planning and supervised the work. All coauthors participated in the study, helped interpreting the results and worked on the manuscript. All authors discussed the results, commented and agreed on the final version of the manuscript.

Ethics statement

The research complied with the guidelines for human studies and was conducted according to the ethical principles of the Declaration of Helsinki and in line with the principles of Good Clinical Practice (ICH-GCP) and was registered at the German Clinical Trials Registry (DRKS00025315) before recruitment of the first patient. The study protocol was approved by the independent ethics committees and informed consent was obtained from each patient before any study specific procedures.

Disclosure statement

Caroline Mann: Grants or contracts from any entity: Novartis; Allmirall | Consulting fees: Almirall-Hermal, Payment or honoraria for lectures, presentations, speakers bureaus, manuscript writing or educational events: PER, UNEV, AbbVie, Pfizer, Novartis, L’Oreal | Support for attending meetings and/or travel: AbbVie, Pfizer, Lilly, Almirall, L’Oreal, Takeda, Novartis– funding of travel, congress, and hotel fees. Petra Staubach: Grants or contracts from any entity: Novartis; Allmirall | Consulting fees: AbbVie, Allergika, Almirall-Hermal, Amgen, Beiersdorf, Biocryst, BMS, Boehringer-Ingelheim, Celgene, CSL-Behring, Eli-Lilly, Falk, Galderma, Hexal, Janssen, Klinge, Klosterfrau, LEO-Pharma, LETI-Pharma, L’Oreal, Novartis, Octapharma, Pfizer, Pflüger, Pharming, Regeneron, Shire, Takeda, Sanofi-Genzyme, UCB Pharma | Leadership or fiduciary role in other board, society, committee or advocacy group, paid or unpaid unrelated to current work presented here: Society of dermopharmazie. Georgios Nikolakis: Consulting fees - Dessau Medical Center received a consulting fee from Mölnlycke Health Care GmbH, for which I served as a consulting physician |Payment or honoraria for lectures, presentations, speakers bureaus, manuscript writing or educational events: Speaker for the EADV HS Course 28–30.11.2022, Porto, Portugal | Support for attending meetings and/or travel: Elli Lilly Scholarship for attending EADV 2021 | Participation in a data protection monitoring board or advisory board - Dessau Medical Center received a consulting fee from Mölnlycke Health Care GmbH, for which I served as a consulting physician. Joanna Wegner: Payment or honoraria for lectures, presentations, speakers bureaus, manuscript writing or educational events: AbbVie, Janssen, Novartis - Honoraria for lectures | Support for attending meetings and/or travel: Lilly, Pfizer - Assumption of travel-. congress- and hotel fees. Esther Stebut: Consulting fees: Janssen, Novartis | Payment or honoraria for lectures, presentations, speakers bureaus, manuscript writing or educational events: Janssen, Novartis, Infectopharm, Leo | Leadership or fiduciary role in other board, society, committee or advocacy group, paid or unpaid: Deutsche Dermatologische Gesellschaft, Deutsche Forschungsgemeinschaft, Mediziner Fakultätentag). Jacek C Szepietowski: Advisory Board/Consultant for AbbVie, Leo Pharma, Novartis, Pfizer, Sanofi-Genzyme, Trevi, UCB and Vifor; Speaker for AbbVie, Almirall, Janssen-Cilag, Eli-Lilly, Leo Pharma, Novartis, Pfizer, Sanofi-Genzyme; Investigator for for AbbVie, Almirall, Amgen, AnaptysBio, BMS, Boehringer Ingelheim, Celtrion, Galderma, Galapagos, Helm AG, Kliniksa, Incyte, InfraRX, Janssen-Cilag, Leo Pharma, Medimmune, Menlo Therapeutics, Merck, Novartis, Pfizer, Regeneron, UCB, Teva, Trevi. Lukasz Matusiak: Advisory Board/Consultant for AbbVie, Novartis; Speaker for AbbVie, Aristo, Leo Pharma, Medac; Investigator for for AbbVie, Almirall, Amgen, AnaptysBio, BMS, Boehringer Ingelheim, Celtrion, Galderma, Galapagos, Helm AG, Kliniksa, Incyte, InfraRX, Janssen-Cilag, Leo Pharma, Medimmune, Menlo Therapeutics, Merck, Novartis, Pfizer, Regeneron, UCB, Teva, Trevi. Uwe Kirschner: Grants or contracts from any entity: UCB Pharma Congress fees; Payment or honoraria for lectures, presentations, speakers bureaus, manuscript writing or educational events: Novartis | Support for attending meetings and/or travel: UCB Pharma; Novartis; Participation on a data protection monitoring board or advisory board: Novartis. Katharina Hennig: Patents planned, issued or pending: DE102015000150B4 | Stocks or stock options LENICURA GmbH – CEO and stockholder of the company. Stephan Grabbe: Grants or contracts from any entity: Novartis, Pierre Fabre | Consulting fees: AbbVie, BMS, MSD, Genzyme, Klinge Pharma, Sun Pharma, Kyowa-Kirin, Novartis, Pierre Fabre | Participation on a Data Safety Monitoring Board or Advisory Board: Alcedis | Leadership or fiduciary role in other board, society, committee or advocacy group, paid or unpaid unrelated to current work presented here: DeCOG, German dermatological cooperative oncology group - unrelated to current work presented here. Maurizio Podda: Maurizio Podda: Consulting fees: AbbVie, CSL, Galderma, Novartis, Janssen Cilag, UCB | Payment or honoraria for lectures, presentations, speakers bureaus, manuscript writing or educational events: AbbVie, Beiersdorf, BMS, Eli Lilly, Galderma, Janssen Cilag, Leo Pharma, L’Oreal, Novartis, MSD, UCB | Support for attending meetings and/or travel: AbbVie, Beiersdorf, BMS, Eli Lilly, Galderma, Janssen-Cilag, Leo Pharma, L’Oreal, Novartis, MSD, UCB | Participation on a Data Safety Monitoring Board or Advisory Board: AbbVie, Boehringer Ingelheim, CSL, Galderma, Janssen-Cilag, MoonLake, Novartis, L’Oreal, UCB | Leadership or fiduciary role in other board, society, committee or advocacy group, paid or unpaid: HiSNet Rhein Main e.V., President. Dr. Simone Garcovich: nothing to declare. Michael Schultheis: Grants or contracts from any entity: LENICURA GmbH - auditor activity on the implementation of the contract ‘AOK-Priomed Acne inversa’ | Participation on a Data Safety Monitoring Board or Advisory Board: Novartis| Payment or honoraria for lectures, presentations, speakers bureaus, manuscript writing or educational events: AbbVie - honoraria for lectures | Support for attending meetings and/or travel: AbbVie, Pfizer – funding of travel, congress, and hotel fees.

Data availability statement

All data is available from the authors upon reasonable request.

Additional information

Funding

The LENICURA software provided the digital questionnaires free of charge.