Families of adults with idiopathic hypersomnia and narcolepsy: psychosocial impact and contribution to symptom management

Study Objectives: This study examined the impact of central disorders of hypersomnolence (CDH) on family members of adult patients, the ways family members assist with managing CDH, and family members' utilization and satisfaction with information and support. Methods: Participants were adults (n =100) with an adult family member diagnosed with idiopathic hypersomnia or narcolepsy. They completed a survey which included the Family Reported Outcome Measure, checklists, satisfaction ratings, and open-response questions. Results: The Family Reported Outcome Measure sample mean (14.2, standard deviation = 6.8) corresponded to a moderate effect on quality of life. Compared to parents, partners reported a higher impact on the personal and social life domain (P = .04, d = .44). The most frequently endorsed sources of support were family (60.0%) and friends (50.0%), whereas information was most commonly obtained from hypersomnia organizations (69.0%) and medical professionals (61.0%). Only 8.0% of participants were satisfied with support, and 9.0% were satisfied with information. Participants endorsed assisting with managing CDH, such as picking up prescriptions (61.0%), attending medical visits (50.0%), reminding to take medication (48.0%), and coordinating medical care (39.0%). Qualitative data indicated that relationships underwent a transformation from conflict and confusion (prediagnosis) to clarity (postdiagnosis), followed by adjusting expectations. Caregiving strain, effects on shared activities, and negative psychosocial impacts on family also emerged as themes. Conclusions: Family members play an important role in supporting adults with CDH in many ways, including tasks related to managing CDH. Family members experience many psychosocial impacts from CDH, and data from this study indicate unmet needs for support.