Mundt Jennifer M, Franklin Rachel-Clair, Horsnell Matthew, Garza Victoria
Department of Neurology, Northwestern University Feinberg School of Medicine, Chicago, Illinois.
Center for Circadian and Sleep Medicine, Northwestern University Feinberg School of Medicine, Chicago, Illinois.
J Clin Sleep Med. 2025 Apr 1;21(4):683-694. doi: 10.5664/jcsm.11526.
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.
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.
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 ( = .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.
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.
Mundt JM, Franklin R-C, Horsnell M, Garza V. Families of adults with idiopathic hypersomnia and narcolepsy: psychosocial impact and contribution to symptom management. . 2025;21(4):683-694.
本研究探讨了中枢性过度嗜睡障碍（CDH）对成年患者家庭成员的影响、家庭成员协助管理CDH的方式以及家庭成员对信息和支持的利用情况与满意度。
参与者为成年患者（n = 100），其成年家庭成员被诊断患有特发性嗜睡症或发作性睡病。他们完成了一项调查，其中包括家庭报告结局量表、清单、满意度评分和开放式问题。
家庭报告结局量表样本均值（14.2，标准差 = 6.8）对应于对生活质量的中度影响。与父母相比，伴侣报告对个人和社会生活领域的影响更大（P = 0.04，d = 0.44）。最常被认可的支持来源是家人（60.0%）和朋友（50.0%），而信息最常来自嗜睡症组织（69.0%）和医疗专业人员（61.0%）。只有8.0%的参与者对支持感到满意，9.0%的参与者对信息感到满意。参与者认可协助管理CDH，例如取药（61.0%）、陪同就诊（50.0%）、提醒服药（48.0%）和协调医疗护理（39.0%）。定性数据表明，人际关系经历了从冲突和困惑（诊断前）到清晰（诊断后）的转变，随后是调整期望。照顾负担、对共同活动的影响以及对家庭的负面心理社会影响也成为主题。
家庭成员在许多方面对患有CDH的成年人提供支持方面发挥着重要作用，包括与管理CDH相关的任务。家庭成员因CDH经历了许多心理社会影响，本研究数据表明存在未满足的支持需求。
Mundt JM, Franklin R-C, Horsnell M, Garza V. 特发性嗜睡症和发作性睡病成年患者的家庭：心理社会影响及对症状管理的贡献。. 2025;21(4):683 - 694。
