Actigraphic and patient and family reported sleep outcomes in children and youth with cystic fibrosis: A systematic review

Background Sleep concerns are commonly reported by children and youth with cystic fibrosis (CF). Understanding normative sleep in the home environment and as reported from the perspective of patients and parents is a first step in responding to an important clinical concern and developing a sleep intervention strategy. This systematic review aimed to describe actigraphic and self/parent reported measures of sleep quantity; quality; and determine factors associated with poor sleep quantity and/or quality in children and youth (0-25yrs.) with CF. Methods Five online databases; Medline, Embase, CINAHL, PsycInfo, and CENTRAL were searched for relevant articles from inception-February 2020. Studies reporting primary data, using either qualitative/quantitative methods or both were eligible for inclusion. Eligible full text articles were independently screened by two reviewers. Data from included studies were independently extracted and synthesized by one reviewer and accuracy verified independently by a second reviewer. Results This review found 31 articles that met inclusion criteria. Analysis found evidence demonstrating that actigraphic SE was lower, actigraphic nighttime awakenings were greater, and self/parent-reported measures of sleep quality were poorer in children and youth with CF. Study findings related to actigraphic TST, WASO, and self/parent-reported sleep duration were mixed. Thirteen factors demonstrated an association with poor quality sleep. Conclusions In children and youth with CF, evidence exists of objectively measured sleep disturbance and poor self/parent reported sleep quality. Further longitudinal and comparative research studies are warranted to better understand sleep disturbance in this population. Clinically, sleep assessment should be an integral part of routine CF care.