Patient-Reported Experiences With Median Arcuate Ligament Syndrome: Resilience and Resources Required

Area of Science:

• Vascular Surgery
• Pediatric Gastroenterology
• Patient Experience Research

Background:

• Median arcuate ligament syndrome (MALS) is a rare vascular condition requiring surgical intervention.
• Diagnosis is challenging, often involving extensive testing and potential misdiagnosis for pediatric patients.
• The patient and parent experience of MALS diagnosis, treatment, and recovery is not well-documented.

Purpose of the Study:

• To assess pediatric patients' and parents' experiences coping with MALS symptoms.
• To evaluate the diagnostic and treatment process for pediatric MALS.
• To understand the recovery journey for pediatric MALS patients.

Main Methods:

• Mixed-methods study involving semistructured focus groups and self-report questionnaires.
• Participants included nine postsurgical pediatric patients and six parents.
• Data collection focused on patient/parent experiences and current functioning.

Main Results:

• Four major themes emerged: impact of MALS (physical/psychosocial), diagnostic uncertainties, extensive medical testing, and mental health effects.
• Patients and parents reported consistent experiences, aligning with quantitative data.
• Specific themes included appreciation for care, recommendations, and the interdisciplinary treatment team.

Conclusions:

• Pediatric MALS diagnosis and intervention require significant resilience and resources.
• Increased knowledge about MALS is needed.
• An interdisciplinary treatment team and long-term follow-up are essential for pediatric MALS patients.