Identifying Unmet Care and Communication Needs of Families Affected by Complex Lymphatic Anomalies
Awardee: Bryan Sisk
Institution: Washington University School of Medicine
Grant Amount: $53,460
Funding Period: February 1, 2022 - January 31, 2023
Summary:
Complex lymphatic anomalies (CLAs) are a group of rare disorders associated with abnormal lymphatic development that arise in infants and children. These disorders can be disfiguring, painful, and even life-threatening. In our clinical experiences, families affected by CLAs have described multiple barriers to care and communication, such as difficulty accessing care from CLA experts, persistent uncertainty about the diagnosis and long-term consequences, insufficient information to guide decisions, and the necessity of persistent parental advocacy to ensure the child receives adequate medical care. However, no researchers have explored or categorized the needs or barriers experienced by these families. Without this critical information, we cannot provide guidance to clinicians, patients, parents, or advocacy groups on how to best support these families to overcome care and communication challenges. Furthermore, this foundational knowledge is necessary to support the development of interventions and systemic changes to improve care for these families. In this study, we will characterize the care and communication needs of families affected by CLAs and identify resources and coping strategies from the perspectives of parents using qualitative semi-structured interviews (Aim 1). We will also assess the psychosocial wellbeing of parents and the quality of communication using survey methodology (Aim 2). To disseminate findings and seek feedback from the CLA community (Aim 3), we will host separate interactive webinars with the Lymphangiomatosis and Gorham’s Disease Alliance (LGDA) and the Chan-Zuckerberg Institute (CZI) Lymphatic Researchers Network. These findings will be essential to improve care and ensure that scientific discoveries translate to actual clinical benefits for families affected by CLAs.