Lasers, Birthmarks, and Sturge‐Weber Syndrome: A Pilot Survey

Abstract

Background and Objectives There is limited or no data on the experience of patients with Sturge‐Weber Syndrome (SWS) and/or their parents who seek out laser treatments for their port‐wine birthmark (PWB). Our study aimed to develop a survey to understand patient perspectives on laser therapy and subsequent behaviors while focusing on three elements of the health belief model: perceived susceptibility, perceived benefits, and perceived barriers. Study Design/Materials and Methods A 31 item survey was developed and sent to 650 members of the Sturge‐Weber Foundation. The survey included questions regarding four domains: demographics, disease severity, laser experience, and perceptions and behaviors. Logistic regression models and bivariate analyses were conducted to analyze the results. Results Among the 123 respondents, earlier initiation of laser treatments was associated with greater birthmark satisfaction. Overall satisfaction increased up to 20 treatments and then leveled off. Color satisfaction increased up to 100 laser treatments; however, the flatness of the PWB was not associated with the number of laser treatments. The perceived benefits of lasers were not associated with the number of lifetime treatments or with spending. However, the perceived susceptibility was associated with greater spending on travel and medical expenses. Conclusion The results of our survey provide insight into SWS patient experiences, beliefs, and behaviors regarding laser therapy. Further exploration of these variables may allow for the improvement of the care experience. Lasers Surg. Med. © 2020 Wiley Periodicals LLC

Sturge–Weber syndrome: Updates in pathogenesis, diagnosis, and treatment

“…Pulsed-dye laser is the current standard of care for most young patients, and this technology continues to evolve. [110][111][112] Standard treatment for glaucoma in SWS eye involvement involves eye drops that decrease eye pressure; 33,65,113 if this cannot counteract the increased pressure, surgical procedures such as a trabeculotomy or goniotomy may relieve pressure. 16 Eye pressure must be monitored closely, especially when the facial capillary malformation involves the eyelids.…”

“…Most patients treated early show substantial improvement, and later hypertrophy of underlying soft tissue or bone is less likely when the birthmark is treated. Pulsed‐dye laser is the current standard of care for most young patients, and this technology continues to evolve 110–112 …”