Problems with sleep, eating, and adherence to therapy are common among children with cystic fibrosis

Ward C, Massie J, Glazner J, Sheehan J, Canterford L, Armstrong D, et al. Problem behaviors and parenting in preschool children with cystic fibrosis. Arch Dis Child 2009;94:341-7.

Question 

Among children with cystic fibrosis (CF), how common are problems with sleep, eating, and adherence to therapy, or behavioral problems? Is there an association with different parenting styles (harsh, inconsistent, overprotective)?

Design 

Cross-sectional survey.

Setting 

CF outpatient clinics at Royal Children's Hospital (Melbourne), Monash Medical Centre (Melbourne) and Sydney Children's Hospital, Australia.

Participants 

A total of 117 (of 139 eligible) caregivers of children aged 6 months to 5 years.

Intervention 

Surveys of behavior, sleep, eating, and adherence to therapy.

Outcomes 

Child externalizing and internalizing behaviors, sleep, eating, and adherence with therapy.

Main Results 

Problems were common with child sleep (small problem: 31.6%; moderate/large problem: 21.9%), eating (32.4%), and adherence with physiotherapy (50.4%). Compared with normative data, sleep and mealtime problems were more prevalent. Caregivers reported high rates of symptoms indicating depression (33.3%), anxiety (16.4%), and stress (34.2%). Harsh parenting was associated with internalizing behaviors (adjusted OR 3.9, 95% CI 1.16 to 13.17, P = .03).

Conclusions 

Problems with sleeping, eating and physiotherapy adherence were common in preschool children with CF. Caregivers reported high rates of symptoms indicative of mental health problems. Harsh parenting was associated with internalizing problems. An intervention targeting child problem behaviors and parental mental health would be appropriate for CF families.

Commentary 

This study examined comorbid problems for 117 children aged 6 months to 6 years with CF attending 3 major Australian hospitals. Findings confirm prior reports of elevated concerns about mealtime behaviors (40%), adherence to physiotherapy (50%), and caregiver depression (33%). Additional new findings include elevated problems with children's sleep (45% to 61%) and otherwise normative rates of internalizing (emotional) and externalizing (behavioral) problems. Clinically, these findings indicate the common problems comorbid to CF and the need for clinicians to inquire about potential difficulties with children's sleep, eating, and physiotherapy adherence. The study also highlights the importance of inquiring whether caregivers are receiving adequate support for the stress and grief associated with chronic child illness. One interesting finding not discussed by the authors is that even though caregivers reported higher mealtime behaviors they regarded as problematic, the frequency of such behaviors was only marginally elevated compared with the community sample. The eating behaviors of children with CF may be similar to the general population but may elicit more concern in those who care for them. Although case-control studies remain the optimal design for examining the effects of diseases, this study illustrates how a variety of comparative data can be informatively used in the absence of such methodology. Predictions regarding parenting practices and child externalizing and internalizing problems require attention in future case-control and longitudinal studies, given questions raised about statistical power, and some discrepancies with normative findings in the field (eg, harsh discipline is usually found to predict externalizing problems, but no such association was reported here).