Hidradenitis suppurativa through the lens of YouTube: A cross-sectional analysis

To the Editor: Patients are increasingly using social media platforms to find and share information regarding their health.1Fox S. The life of health information, 2011. Pew Research Center.https://www.pewresearch.org/internet/2011/05/12/the-social-life-of-health-information-2011/Date: 2011Date accessed: December 19, 2019Google Scholar,2Chen Y.Y. Li C.M. Liang J.C. et al.Health obtained from internet changes in medical decision making: questionnaire development cross-sectional survey.J Med Internet Res. 2018; 20: e47Crossref PubMed Scopus (99) Google Scholar Investigating health-related uploaded by patients onto may offer unique insights into patient perspectives. YouTube, a popular video-sharing platform, has already been used study wide variety dermatologic diseases.3Guzman A.K. Wang R.H. Nazarian R.S. al.Evaluation YouTube as an educational resource for treatment options common conditions.Int J Dermatol. 2020; 59: e65-e67Crossref (8) However, our knowledge, there no studies date describing content hidradenitis suppurativa (HS)–related videos on YouTube. In this study, we analyzed 284 between January 1, 2016 November 21, 2019 relating hidradenitis, suppurativa, or acne inversa investigate attitudes toward HS. Video was manually classified user type (ie, who appeared video), predominant topics, disease experiences, treatments mentioned, satisfaction, which assessed with Fisher's exact test. Two authors independently coded videos, high interrater reliability (Cohen kappa, >0.8). majority featured (62.3%, 177/284) (Table I). There comparatively less participation care providers (21.1%, 60/284). Specifically, dermatologists were minority (7.0%, 20/284). Primary physicians, surgeons, naturopathic also featured. Videos starring attracted most views (Supplemental Fig 1; available via Mendeley at https://doi.org/10.17632/jmjzr2zhyx.1), suggesting that audiences searching HS-related preferentially viewing providers.Table IHidradenitis video characteristicsVideo featuresn (%) Patient177 (62.3) Health provider: physician36 (12.7) nonphysician19 (6.7) group/foundation5 (1.7) News company1 (0.3) Pharmaceutical company7 (2.5) Advertisement/commercial company33 (11.6) Other31 (10.9)Disease status∗Percentage out 177 total featuring patients. Flaring77 (43.5) Stable57 (32.2) Not mentioned43 (24.3)Predominant topics Education/HS awareness199 (70.1) Advertisement71 (25) Personal experience172 (60.6) Seeking community81 (28.5) Inspirational video27 (9.5)Video mentions pain Yes171 (60.2) No113 (39.8)Provider seen∗Percentage Dermatologist32 (18.1) provider18 (10.2) General surgeon13 (7.3) Plastic surgeon16 (9.0) Emergency department/inpatient hospital stay12 (6.8) Gynecologist6 (3.4) Unspecified provider41 (23.2) mentioned73 (41.2)Delay diagnosis∗Percentage Yes51 (28.8) No5 (2.8) mentioned121 (68.4)HS, Hidradenitis suppurativa.∗ Percentage Open table new tab HS, suppurativa. Predominant included education (70.1%, 199/284), personal experiences (60.6%, 172/284), seeking community (28.5%, 81/284), advertisements (25.0%, 71/284), inspirational (9.5%, 27/284). Citing lack about HS feelings isolation, referred important exchanging finding psychosocial support. Our showed delays diagnosis significant problem (28.8%, 51/177), attributed embarrassment, initial misdiagnosis nondermatologists. usually mistaken cancer, sexually transmitted diseases, poor hygiene, causing unnecessary distress. Additionally, nearly three quarters (72.5%, 124/171) stressed impact uncontrolled quality life. Therefore, greater emphasis management is needed, because formal investigating lacking.4Alikhan A. Sayed C. Alavi al.North American clinical guidelines suppurativa: publication United States Canadian Suppurativa Foundations: part I: diagnosis, evaluation, use complementary procedural management.J Am Acad 2019; 81: 76-90Abstract Full Text PDF (123) Scholar,5Horvath B. Janse I.C. Sibbald G.R. Pain suppurativa.J 2015; 73: S47-S51Abstract (44) Regarding options, alternative therapies frequently mentioned overall Table I; whereas discussing surgery garnered highest number 2; https://doi.org/10.17632/jmjzr2zhyx.1). Of 107 addressed outcomes, 30% (32/107) 70% (75/107) reported satisfaction dissatisfaction, respectively. higher nonconventional II; https://doi.org/10.17632/jmjzr2zhyx.1) compared conventional (84.2% vs 50.0%; P = .005) II).Table IIComparison versus therapiesFisher's test value .005Dissatisfied, n (%)Satisfied, (%)Nonconventional therapy∗Lifestyle modification, therapy.6 (15.8)‡Of 43 both methods omitted analysis, 64 better isolate if one method had proportion than other.32 (84.2)‡Of other.Conventional therapy†Antibiotics, steroids, biologics, phototherapy, laser, surgery, hormone therapy, spironolactone.13 (50.0)‡Of other.13 other.∗ Lifestyle therapy.† Antibiotics, spironolactone.‡ other. conclusion, valuable data source perspectives shows potential unmet needs expressed including deficiencies education, paucity support, inadequate control, dissatisfaction. fact become key make decisions, conjunction relative shortage reputable sources highlights need expand online presence improve outreach.