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Evaluating Patients' Unmet Needs in Hidradenitis Suppurativa
TAKE-HOME MESSAGE
- Results of this prospective, multinational survey of over 1200 hidradenitis suppurativa (HS) patients show that the mean delay from onset of symptoms to diagnosis was 10.2 years (+/− 8.9 years), and most patients (63.7%) had visited a physician five or more times before a diagnosis was made. Once diagnosed, 59.8% of patients were primarily managed by a dermatologist; however, 37% of patients rated access to their dermatologist as difficult or very difficult. Of self-reported comorbidities, anxiety (36.2%) and depression (35.8%) were most frequent, and suicidal ideation or attempt was reported by 9.1% of patients.
- The authors suggest that dermatologists have an important role in reducing diagnosis delay and in increasing accessibility for HS patients and that they should be aware of the high incidence of comorbidities in this population and be proactive in addressing the psychosocial impact of this disease.
– Margaret Hammond, MD
abstract
This abstract is available on the publisher's site.
Access this abstract now Full Text Available for ClinicalKey SubscribersBACKGROUND
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
Majority (63.7%, n=827) visited a physician ≥5 times prior to receiving formal HS diagnosis. Mean delay in diagnosis was 10.2 years (+/- 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, while 4.5% described recent pain to be 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 high frequency of comorbidities, most commonly mood disorders. Patients were dissatisfied with medical or procedural treatments in 45.9% and 34.5%, respectively.
LIMITATIONS
Data was self-reported. Patients with more severe disease may have been selected.
CONCLUSIONS
HS patients have identified several critical unmet needs that will require stakeholder collaboration to meaningfully address.
Additional Info
Evaluating Patients' Unmet Needs in Hidradenitis Suppurativa: Results From the Global VOICE Project
J Am Acad Dermatol 2019 Jul 03;[EPub Ahead of Print], A Garg, E Neuren, D Cha, JS Kirby, JR Ingram, GBE Jemec, S Esmann, L Thorlacius, B Villumsen, VD Marmol, A Nassif, M Delage, T Tzellos, D Moseng, Ø Grimstad, H Naik, R Micheletti, S Guilbault, AP Miller, I Hamzavi, H van der Zee, E Prens, N Kappe, C Ardon, B Kirby, R Hughes, C Zouboulis, G Nikolakis, FG Bechara, L Matusiak, J Szepietowski, A Glowaczewska, SD Smith, N Goldfarb, S Daveluy, C Avgoustou, E Giamarellos-Bourboulis, S Cohen, Y Soliman, EG Brant, O Akilov, C Sayed, J Tan, A Alavi, MA Lowes, JC Pascual, H Riad, S Fisher, A Cohen, SY Paek, B Resnik, Q Ju, L Wang, A StrunkFrom MEDLINE®/PubMed®, a database of the U.S. National Library of Medicine.
This article documents the unmet needs of patients with hidradenitis suppurativa (HS). This large, comprehensive, multinational study involved 27 institutions in 14 countries, which prospectively recruited HS patients to answer 50 questions assessing items such as quality of life, comorbid conditions, and treatments. Results demonstrated what a debilitating inflammatory disease this can be. Most patients visited a physician at least five times prior to receiving a diagnosis, and, on average, experienced a 10-year delay to diagnosis. Access to a dermatologist was often found to be difficult. More than 60% reported moderate or higher pain scores. Anxiety and depression were observed in over one-third of patients, and about 15% of patients filed for disability due to their HS. Patients also reported dissatisfaction with their medical or procedural treatments due to ineffectiveness, side effects, expense, and inconvenience.
As a dermatologist in an academic institution, I try to educate residents and our primary care colleagues on HS to prevent delays in diagnosis. Getting treatment for HS is important because early diagnosis and management can help prevent flare-ups, scarring, and pain. We often find that HS patients need to be seen more frequently to monitor their progress and symptoms and we encourage lifestyle changes that can help minimize flare-ups. But the struggle is real. Many HS patients suffer from impairment of body image, depression, and anxiety, and they often tend to get even more discouraged when treatment options and medications are denied by their insurance plans. The total well-being of HS patients must be addressed in their evaluation and management. This may include multidisciplinary care with surgery, pain management, and behavioral health professionals. Because there is no cure for HS, the condition will need to be managed for life. It is essential not to overlook other unmet needs in their care, as noted in this study.