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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.
Background:
In cystic fibrosis (CF), problems with sleep, eating/mealtime behaviours, physiotherapy adherence and parental mental health issues are common, yet their natural history and the extent of service use to address them are unknown.
Objective:
Follow up the 2007 cohort to determine: (1) prevalence of child sleep, eating/mealtime behaviours, physiotherapy adherence, and externalising/internalising problem behaviours and primary caregiver mental health status after a 3-year period; (2) natural history of child behaviours; (3) potentially modifiable predictors of persistent problems; and (4) service use for behaviours.
Design:
Prospective cohort.
Setting:
Royal Children's Hospital, Monash Medical Centre and Sydney Children's Hospital (Australia) CF clinics.
Participants:
Caregivers, of children aged 3-8 years, who completed the baseline questionnaire.
Main Outcome Measures:
Child sleep, eating/mealtime behaviours, adherence with therapy and externalising and internalising behaviours.
Predictors:
parenting style (low warmth), caregiver mental health status and sleep quality at baseline.
Results:
102 of 116 (88%) families participated. The prevalence of sleep and eating/mealtime problems at follow-up was similar to baseline. The prevalence of caregiver mental health symptoms remained higher than the community data. 71 out of 102 (70%) of the children experienced at least one persistent behaviour problem. Caregiver mental health difficulties predicted persistent child moderate to severe sleep problems (adjusted OR 6.5, 95% CI 1.2 to 36.2, p=0.03) and their persistently poor adherence to the physiotherapy regimen (adjusted OR 3.5, 95% CI 1.3 to 9.2, p=0.01).
Conclusions:
Child problem behaviours are common in children with CF, persist and are often predicted by the mental health of the parent. Routine surveillance for and management of child problem behaviours are recommended.
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