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The natural history and predictors of persistent problem behaviours in cystic fibrosis: a multicentre, prospective study
  1. Jane Sheehan1,2,3,
  2. John Massie2,4,5,
  3. Margaret Hay3,
  4. Adam Jaffe6,7,
  5. Judith Glazner4,
  6. David Armstrong8,
  7. Harriet Hiscock1,2,5
  1. 1Centre for Community Child Health, Royal Children's Hospital, Parkville, Australia
  2. 2Murdoch Childrens Research Institute, Parkville, Australia
  3. 3Health Psychology and Behavioural Medicine Unit, School of Psychology and Psychiatry, Monash University, Clayton, Australia
  4. 4Department of Respiratory Medicine, Royal Children's Hospital, Parkville, Australia
  5. 5Department of Paediatrics, University of Melbourne, Parkville, Australia
  6. 6Department of Respiratory Medicine, Sydney Children's Hospital, Randwick, Australia
  7. 7School of Womens' and Children's Health, University of New South Wales
  8. 8Department of Paediatrics, Monash University, Clayton, Australia
  1. Correspondence to Jane Sheehan, Centre for Community Child Health, Murdoch Childrens Research Institute, Royal Children's Hospital, 50 Flemington Road, Parkville VIC 3052, Australia; jane.sheehan{at}


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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  • Funding This research was jointly supported by the Centre for Community Child Health, Royal Children's Hospital, Parkville, Victoria, Australia and the School of Psychology and Psychiatry, Faculty of Medicine, Nursing and Health Sciences, Monash University, Clayton, Victoria, Australia.

  • Competing interests None.

  • Ethics approval Ethics approval was granted by the human research ethics committee of Royal Children's Hospital, Monash Medical Centre and Sydney Children's Hospital.

  • Provenance and peer review Not commissioned; externally peer reviewed.