Amit Garg1, Erica Neuren2, Denny Cha2, Joslyn S Kirby3, John R Ingram4, Gregor B E Jemec5, Solveig Esmann5, Linnea Thorlacius5, Bente Villumsen6, Véronique Del Marmol7, Aude Nassif8, Maia Delage8, Thrasyvoulos Tzellos9, Dagfinn Moseng9, Øystein Grimstad9, Haley Naik10, Robert Micheletti11, Sandra Guilbault12, Angie Parks Miller13, Iltefat Hamzavi14, Hessel van der Zee15, Errol Prens15, Naomi Kappe15, Christine Ardon15, Brian Kirby16, Rosalind Hughes16, Christos C Zouboulis17, Georgios Nikolakis17, Falk G Bechara18, Lukasz Matusiak19, Jacek Szepietowski19, Amelia Glowaczewska19, Saxon D Smith20, Noah Goldfarb21, Steven Daveluy22, Christina Avgoustou23, Evangelos Giamarellos-Bourboulis23, Steven Cohen24, Yssra Soliman24, Elena Gonzalez Brant25, Oleg Akilov25, Christopher Sayed26, Jerry Tan27, Afsaneh Alavi28, Michelle A Lowes29, José Carlos Pascual30, Hassan Riad31, Shani Fisher32, Arnon Cohen33, So Yeon Paek34, Barry Resnik35, Qiang Ju36, Lanqi Wang36, Andrew Strunk2. 1. Department of Dermatology, Donald and Barbara Zucker School of Medicine at Hofstra/Northwell, New Hyde Park, New York. Electronic address: amgarg@northwell.edu. 2. Department of Dermatology, Donald and Barbara Zucker School of Medicine at Hofstra/Northwell, New Hyde Park, New York. 3. Department of Dermatology, Penn State Milton S. Hershey Medical Center, Hershey, Pennsylvania. 4. Institute of Infection and Immunity, University Hospital of Wales, Heath Park, Cardiff, United Kingdom. 5. Department of Dermatology, Zealand University Hospital, Roskilde, Denmark. 6. Danish HS Patients' Association, Copenhagen, Denmark. 7. Department of Dermatology, Erasme Hospital, Université Libre de Bruxelles, Brussels, Belgium. 8. Department of Dermatology, Institut Pasteur, Centre Medical, Paris, France. 9. Department of Dermatology, Faculty of Health Sciences, University Hospital of North Norway, Institute of Clinical Medicine, Arctic University, Tromsø, Norway. 10. Department of Dermatology, University of California, San Francisco, California. 11. Department of Dermatology, Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania. 12. Hope For HS, Detroit, Michigan. 13. Hope For HS, Detroit, Michigan; Department of Dermatology, Henry Ford Hospital, Detroit, Michigan. 14. Department of Dermatology, Henry Ford Hospital, Detroit, Michigan. 15. Department of Dermatology, Erasmus University Medical Center, Rotterdam, Netherlands. 16. Department of Dermatology, St. Vincent's University Hospital, Dublin, Ireland. 17. Departments of Dermatology, Venereology, Allergology, and Immunology, Dessau Medical Centre, Brandenburg Medical School Theodor Fontane, Dessau, Germany. 18. Department of Dermatology, Venereology and Allergology, St. Josef Hospital, Ruhr-University, Bochum, Germany. 19. Department of Dermatology, Venereology and Allergology, Wrocław Medical University, Wrocław, Poland. 20. Department of Dermatology, Northern Clinical School, Sydney Medical School, The University of Sydney, Sydney, New South Wales, Australia. 21. Department of Dermatology, University of Minnesota, Minneapolis, Minnesota. 22. Department of Dermatology, Wayne State University School of Medicine, Detroit, Michigan. 23. 4th Department of Internal Medicine, National and Kapodistrian University of Athens Medical School, Athens, Greece. 24. Division of Dermatology, Albert Einstein College of Medicine, Bronx, New York. 25. Department of Dermatology, University of Pittsburgh, Pittsburgh, Pennsylvania. 26. Department of Dermatology, University of North Carolina School of Medicine, Chapel Hill, North Carolina. 27. Department of Medicine, Western University, Windsor Campus, Windsor, Ontario, Canada. 28. Division of Dermatology, Women College Hospital, University of Toronto, Toronto, Ontario, Canada. 29. Laboratory for Investigative Dermatology, The Rockefeller University, New York, New York. 30. Department of Dermatology, Alicante University General Hospital, Alicante Institute for Health and Biomedical Research (ISABIAL-FISABIO Foundation), Alicante, Spain. 31. Dermatology Department, Al Wakra Hospital, Hamad Medical Corporation, Doha, Qatar. 32. Dermatology Department, Emek Medical Center, Afula, Israel. 33. Department of Quality Measures and Research Chief Physician Office, General Management Clalit Health Services, Tel Aviv, Israel. 34. Department of Dermatology, Baylor Scott & White Health, Dallas, Texas. 35. Department of Dermatology and Cutaneous Surgery, Miller School of Medicine, Miami, Florida. 36. Department of Dermatology, Renji Hospital School of Medicine, Shanghai Jiaotong University, Shanghai, China.
Abstract
BACKGROUND: A needs assessment for patients with hidradenitis suppurativa (HS) will support advancements in multidisciplinary care, treatment, research, advocacy, and philanthropy. OBJECTIVE: To evaluate unmet needs from the perspective of HS patients. METHODS: Prospective multinational survey of patients between October 2017 and July 2018. RESULTS: Before receiving a formal HS diagnosis, 63.7% (n = 827) of patients visited a physician ≥5 times. Mean delay in diagnosis was 10.2 ± 8.9 years. Patients experienced flare daily, weekly, or monthly in 23.0%, 29.8%, and 31.1%, respectively. Most (61.4% [n = 798]) rated recent HS-related pain as moderate or higher, and 4.5% described recent pain to be the worst possible. Access to dermatology was rated as difficult by 37.0% (n = 481). Patients reported visiting the emergency department and hospital ≥5 times for symptoms in 18.3% and 12.5%, respectively. An extreme impact on life was reported by 43.3% (n = 563), and 14.5% were disabled due to disease. Patients reported a high frequency of comorbidities, most commonly mood disorders. Patients were dissatisfied with medical or procedural treatments in 45.9% and 34.6%, respectively. LIMITATIONS: Data were self-reported. Patients with more severe disease may have been selected. CONCLUSION: HS patients have identified several critical unmet needs that will require stakeholder collaboration to meaningfully address.
BACKGROUND: A needs assessment for patients with hidradenitis suppurativa (HS) will support advancements in multidisciplinary care, treatment, research, advocacy, and philanthropy. OBJECTIVE: To evaluate unmet needs from the perspective of HS patients. METHODS: Prospective multinational survey of patients between October 2017 and July 2018. RESULTS: Before receiving a formal HS diagnosis, 63.7% (n = 827) of patients visited a physician ≥5 times. Mean delay in diagnosis was 10.2 ± 8.9 years. Patients experienced flare daily, weekly, or monthly in 23.0%, 29.8%, and 31.1%, respectively. Most (61.4% [n = 798]) rated recent HS-related pain as moderate or higher, and 4.5% described recent pain to be the worst possible. Access to dermatology was rated as difficult by 37.0% (n = 481). Patients reported visiting the emergency department and hospital ≥5 times for symptoms in 18.3% and 12.5%, respectively. An extreme impact on life was reported by 43.3% (n = 563), and 14.5% were disabled due to disease. Patients reported a high frequency of comorbidities, most commonly mood disorders. Patients were dissatisfied with medical or procedural treatments in 45.9% and 34.6%, respectively. LIMITATIONS: Data were self-reported. Patients with more severe disease may have been selected. CONCLUSION: HS patients have identified several critical unmet needs that will require stakeholder collaboration to meaningfully address.
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