(282) Caregivers of Infants with CF and CRMS with Prior History of Depression or Anxiety Report Difficulties Related to Sleepiness

Background: Parents of infants with CF have the challenge of a significant treatment burden in addition to the inherent sleep disruption during infancy [1]. Caregivers of children with CF are at an increased risk of developing depression and anxiety [2]. Little work has been done to describe the sleep challenges faced by families caring for infants with CF.

Methods: Parents of infants with CF or CF transmembrane regulator-related metabolic syndrome (CRMS) aged one to twelve months were enrolled in a single-center prospective observational study. Caregivers completed a demographic survey, including questions about diagnosed psychiatric disorders and perceived quality of sleep before the birth of their child. Sleepiness and its impact on daily activities were identified by the Functional Outcomes of Sleep Questionnaire (FOSQ), which analyzes participants’ ability to engage in five domains: productivity, leisure activities, social life, vigilance, and intimacy [3]. The scoring scale ranges from 1 (extreme difficulty in performing activity due to tiredness) to 4 (no difficulty).

Results: A total of 48 caregivers were enrolled with the FOSQ survey completed at baseline. Infants were less than 12 months of age at enrollment, with most (83%) under 5 months of age. A prior diagnosis of depression or anxiety was reported in 23% and 31% of caregivers, respectively. Ten individuals (21%) reported comorbid depression and anxiety. Before the birth of their child, 83% of caregivers rated their sleep as “slept well every night” or “slept well most nights.” Within this group, only 72% of caregivers with depression and 68% with anxiety endorsed good sleep. Following the birth of their child, a significant percentage of caregivers with a history of depression and/or anxiety (CwDA) reported difficulty in performing activities due to sleepiness, with a higher percentage reporting difficulty compared to caregivers that did not report depression or anxiety (Table 1).

Conclusions: Parents of infants with CF and CRMS face many new stressors and childcare challenges, which can be compounded by a comorbid diagnosis of anxiety or depression. A majority of CwDA in our population report difficulty concentrating, remembering things, and completing tasks due to feeling sleepy or tired. CF care teams should be cognizant of the functional impact of sleep deprivation on caregivers. We hope to further the preliminary results of the study with data on long-term medical outcomes for patients with CF and its relationship to caregiver sleepiness during the child’s infancy.

Acknowledgements:

References: 1. Meltzer LJ, Mindell JA. Impact of a child's chronic illness on maternal sleep and daytime functioning. Arch Intern Med. 2006;166(16):1749-55. doi: 10.1001/archinte.166.16.1749.
2. Quittner AL, Goldbeck L, Abbott J, et al. Prevalence of depression and anxiety in patients with cystic fibrosis and parent caregivers: results of The International Depression Epidemiological Study across nine countries. Thorax. 2014;69:1090-1097.
3. Chasens ER, Ratcliffe SJ, Weaver TE. Development of the FOSQ-10: a short version of the Functional Outcomes of Sleep Questionnaire. Sleep. 2009;32(7):915-9. doi: 10.1093/sleep/32.7.915.