Factors affecting pathways to care for children and adolescents with complex vascular malformations: parental perspectives

Abstract

Background Complex vascular malformations (VMs) are rare disorders that can cause pain, coagulopathy, disfigurement, asymmetric growth, and disability. Patients with complex VMs experience misdiagnosis, delayed diagnosis, delayed or inappropriate treatments, and worsened health. Given the potential consequences of delaying expert care, we must identify the factors that impede or facilitate this access to care. Results We performed semi-structured interviews with 24 parents (21 mothers; 3 fathers; median age = 42.5 years) of children with complex VMs and overgrowth disorders living in the US, recruited through two patient advocacy groups – CLOVES Syndrome Community, and Klippel-Trenaunay Support Group. We performed thematic analysis to assess parental perspectives on barriers and facilitators to accessing expert care. We identified 11 factors, representing 6 overarching themes, affecting families’ ability to access and maintain effective care for their child: individual characteristics (clinician behaviors and characteristics, parent behaviors and characteristics), health care system (availability of specialist multidisciplinary teams, care coordination and logistics, insurance and financial issues, treatments and services), clinical characteristics (accuracy and timing of diagnosis, features of clinical presentation), social support networks, scientific progress, and luck and privilege. Additionally, access to information about VMs and VM care was a crosscutting theme affecting each of these factors. These factors influenced both the initial access to care and the ongoing maintenance of care for children with VMs. Conclusion Parents of children with VMs report multiple factors that facilitate or impede their ability to provide their child with optimal care. These factors represent possible targets for future interventions to improve care delivery for families affected by VMs.

Communication with parents and young adult patients affected by complex vascular malformations

“…However, many participants highlighted the absence of these characteristics in clinicians. Given the rarity of these disorders, many families struggle to find knowledgeable and committed clinicians 11 . When engaging with clinicians unfamiliar with vascular anomalies, families can feel dismissed and unsupported.…”

“…However, many families struggle to obtain high‐quality information, and many clinicians lacked detailed knowledge about VMs. Advocacy groups and social media filled this void by providing information from the perspectives of other affected families 11 . To support information exchange in this population, families and clinicians need easily accessible information about VMs and associated syndromes, with information provided at lay and professional levels of detail.…”

“…First, targeted therapies for VMs have only been available for the last decade, and the US Food and Drug Administration approved the first targeted inhibitor for VMs in 2022 8 . As a result, families struggle to find knowledgeable clinicians and learn about these advances 11 . Instead, many families are told, “There's nothing we can do for you.” Conversely, hope has become standard language in oncology 34,36–41 .…”

“…Parents of children with VMs rely on the support of specialists to make complex decisions 6 . However, parents of children with VMs face multiple barriers to accessing and maintaining expert care 11 . In fact, many families communicate with clinicians who lack the knowledge needed to provide accurate information or facilitate decision‐making 11 …”

“…6 However, parents of children with VMs face multiple barriers to accessing and maintaining expert care. 11 In fact, many families communicate with clinicians who lack the knowledge needed to provide accurate information or facilitate decision-making. 11 In other serious childhood illnesses, communication and care are interrelated.…”