Abstract
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. 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. 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. 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.
Highlights
Sturge‐Weber Syndrome (SWS) is a congenital, neurocutaneous disorder classically characterized by two or three of the following: a facial port‐wine birthmark (PWB), early‐onset glaucoma, and variable degrees of brain involvement [1]
The following PWB locations were reported, and respondents selected as many locations that pertained to their birthmark: 70% eyelid, cheek, and forehead; 60% lip and nose; 40% temple; 25% chin, neck, ear and other; 22% bilateral (Fig. 1)
The results indicated that the majority of people are optimistic about lasers, with 71% believing more lasers will make their PWB less noticeable
Summary
Sturge‐Weber Syndrome (SWS) is a congenital, neurocutaneous disorder classically characterized by two or three of the following: a facial port‐wine birthmark (PWB), early‐onset glaucoma, and variable degrees of brain involvement [1]. There is a paucity of data regarding perceived beliefs and consequent behaviors of patients with SWS. An investigation of these factors is important to understand patient experiences and determine how this population can be better served. 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). 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.
Sign-in/Register to view highlights & summary Sign-in/Register to access full text options 
Free) 
Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a call
