Assessing the impact of COVID-19 on individuals and families affected by vascular anomalies: The VBF COVID-19 survey

The Vascular Birthmarks Foundation (VBF) was established to network patients into treatment and to close the gap between patient and physician knowledge regarding vascular birthmarks, anomalies, and related syndromes (VBARS), which represent a spectrum of disorders from a simple “birthmark” to life threatening hemorrhagic tumors.¹ As the COVID-19 virus began to spread across the globe in early 2020, families affected by a VBARS informed VBF that their appointments for laser treatments, minor surgeries, and drug therapy were being cancelled or delayed. Institutions issued strict policies to discontinue these appointments until further notice, as they considered them nonessential. The VBF COVID-19 Impact Survey was created to measure and quantify the medical and psychosocial effects of the pandemic on adults and children (under age 18) affected by one of the nine primary VBARS types listed on the VBF website. This study took inspiration from the health consequences caused by the hurricane Katrina.²

The VBF COVID-19 Impact Survey was a novel, mixed methods self-reporting instrument created using SurveyMonkey. The survey was available to both adults with a VBARS and caregivers of minors with a VBARS. Caregivers answered questions according to the experiences of their child. There were 705 completed responses (66% caregivers, 34% adults). Most adults had simple Port Wine Stain Birthmarks (56%) followed by Port Wine Stain Birthmarks with Sturge-Weber Syndrome (21%). Nearly half of children (47%) had Hemangiomas followed by Port Wine Stain Birthmarks (29%).

Fifty-six (23%) adults with a VBARS and 251 (54%) of caregivers of children with a VBARS sought care during the COVID-19 pandemic. Sixty-one percent of adults and 67% of caregivers said they experienced skipped, delayed, or cancelled medical care for their or their child's VBARS due to the pandemic. Children who experienced disrupted care were significantly more likely to have a Port Wine Stain or a Port Wine Stain/Sturge-Weber Syndrome combination and less likely to have a Hemangioma (p < 0.05). Children between 0 and 1 years old were significantly less likely to experience disrupted care (p < 0.05), whereas children between 2 and 5 years old were significantly more likely (p < 0.05). Forty-seven percent of adults and 32% of caregivers who experienced skipped, delayed, or cancelled medical care reported that their or their child's VBARS got worse as a result. The most common reported VBARS medical exacerbations were inflammation, pain, and recurrence of Port Wine Stain. Children who did not experience disrupted medical care were significantly more likely to have experienced no medical exacerbations (p < 0.05). Sixty-eight percent of adults and 70% of caregivers experiencing disrupted care were contacted in a timely manner by healthcare providers about rescheduling care. Delay of treatment, cancelled or missed appointments, and limited medical professional and treatment availability were the most common barriers to care (Figure 1 ). Interestingly, 52% of children received telemedicine care, while only 25% of adults did. Children who experienced disrupted care were significantly less likely to have received telemedicine (p < 0.05). Despite experiencing a comparative lack of telemedicine, 52% of adults seeking care had resumed in-person appointments for their VBARS since the pandemic began. Out of these adults, 48% reported that the pandemic had a negative impact on the experience of in-person appointments. Fifty-eight percent of caregivers seeking care had resumed in-person appointments for their child, and 45% reported a negative impact on them.

Figure 1.

Combined data for reported access to care barriers during the pandemic for adults and children.

For adults and children without a mental health diagnosis, 25% and 10% respectively said the pandemic made their mental health, specifically regarding their VBARS, worse. Adults who reported worse mental health were significantly more likely to report having an adverse effect on their VBARS from wearing a mask (p < 0.05). Children with no change in their mental health were significantly less likely to experience any of the access to care barriers in Figure 1 (p < 0.05). Both adults and children who reported that the pandemic had no difference on their mental health were significantly less likely to report medical exacerbations to their VBARS (p < 0.05). Sixty-three percent of adults and 50% of children with a pre-pandemic mental health diagnosis reported that the pandemic made their condition worse.

When asked qualitatively what the most profound effect of the pandemic was on their/their child's VBARS experience, adults and caregivers differed greatly (Figure 2 ). Thirty-five percent of adults identified their facial appearance as the most profound, especially being able to cover their VBARS with a mask. Seventy-three percent of caregivers identified lack of access to care as the most profound, primarily the inability to get treatments for their children.

Figure 2.

Table of selected quotes from adults and caregivers in response to the question, “Has the COVID-19 pandemic had a profound effect on your/your child's VBARS experience? If yes, please explain.” Four main themes emerged: Facial Appearance, Access to Care, Medical Exacerbations, and Psychosocial Effects. Responses were a mixture of positive and negative, but predominantly negative.

The VBF will continue advocating for health care providers and insurance companies to amend their policies so that all VBARS diagnostic and treatment codes are classified as a medical necessity. Treatment experts should also be informed, through this study, of the negative impact from the lack of access to treatment as well as the psychosocial effects of living with a VBARS.

Online resources

www.birthmark.org “Types of Birthmarks” retrieved August 11, 2020. https://birthmark.org/types-of-birthmarks/.

Declaration of Competing Interest

None.