The natural history and predictors of persistent problem behaviours in cystic fibrosis: a multicentre, prospective

Jane Sheehan1, John Massie, Margaret Hay

  • 1Centre for Community Child Health, Murdoch Childrens Research Institute, Royal Children's Hospital, 50 Flemington Road, Parkville VIC 3052, Australia. jane.sheehan@mcri.edu.au

Insights

Child behavior problems are common in cystic fibrosis (CF) and often persist. Parental mental health significantly predicts persistent sleep issues and poor physiotherapy adherence in children with CF.

Area of Science:

  • Pediatric Psychology
  • Chronic Illness Management
  • Behavioral Health

Background:

  • Behavioral and mental health issues are prevalent in children with cystic fibrosis (CF).
  • The natural history and service utilization for these issues in CF are not well understood.
  • Common concerns include sleep disturbances, eating behaviors, physiotherapy adherence, and parental mental health.

Purpose of the Study:

  • To determine the 3-year prevalence and natural history of behavioral problems in children with CF.
  • To identify predictors of persistent behavioral issues and assess service use.
  • To examine child sleep, eating behaviors, physiotherapy adherence, and externalizing/internalizing behaviors.

Main Methods:

  • A prospective cohort study followed 102 families of children with CF (aged 3-8 years) over three years.
  • Data collected included child behaviors, parental mental health, parenting style, and sleep quality.
  • Statistical analysis identified predictors of persistent problems.

Main Results:

  • 70% of children experienced persistent behavioral problems.
  • Parental mental health issues predicted persistent moderate-to-severe sleep problems (OR 6.5) and poor physiotherapy adherence (OR 3.5).
  • Prevalence of child sleep and eating problems remained similar to baseline, while caregiver mental health symptoms stayed elevated.

Conclusions:

  • Behavioral problems are common and persistent in children with CF.
  • Parental mental health is a significant predictor of persistent child behavioral issues and treatment adherence.
  • Routine surveillance and management of behavioral problems in pediatric CF populations are recommended.
Abstract

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