Cystic Fibrosis in Children
Conditions
Brief summary
This study will investigate if parental physical activity levels, assessed by providing a physical activity questionnaire to parents of children aged 6-16 with Cystic Fibrosis (CF), is associated with their child with CF's physical activity levels. Children's activity levels will be taken from electronic records where a questionnaire is routinely given at annual reviews to analyse this. Parental activity levels will also be compared against adherence to nebulisers as a proxy for adherence to treatment, this data is again in the electronic records of patients and is collected at annual reviews.
Interventions
No intervention will be provided, this is an observational study
Sponsors
Study design
Eligibility
Inclusion criteria
1. Parents of Children aged 5-16 years. 2. Under the care of Cambridge University Hospitals CF team 3. Confirmed Cystic Fibrosis diagnosis 4. Uses an ineb as main nebulizer delivery device. 5. Parental/guardian permission (informed consent) and if appropriate, child assent.
Exclusion criteria
1. Parents of CYP diagnosed with a CF screen positive inconclusive diagnosis (SPID). 2. If not yet doing lung function. 3. If has any other self-identified physical disability which may limit physical activity.
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| GPAQ | Reviews the past 7 days activities. | Activity questionnaire for parents |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| CPAQ | Reviews the past 7 days activities. | Physical activity Questionnaire for children aged 5-11 (From medical notes) |
| YPAQ | Reviews the past 7 days activities. | Physical activity Questionnaire for children aged 12 and over (From medical notes) |
| Ineb adherence | 1 year | Adherence to recommended number of nebulised treatment from the i-adhere software downloaded from the ineb device. |
| Lung function | Best score in the last 1 year. | FEV1 (z-score and %), FVC (z-score and %), FEF2575 (z-score and %) (From medical notes) |