Leeds Paediatric Cystic Fibrosis Unit: Annual Psychosocial Review
Research type
Research Database
IRAS ID
207498
Contact name
Alistair JA Duff
Contact email
Research summary
Leeds Paediatric Cystic Fibrosis Unit: Annual Psychosocial Review
REC name
Yorkshire & The Humber - Bradford Leeds Research Ethics Committee
REC reference
17/YH/0001
Date of REC Opinion
27 Jan 2017
REC opinion
Favourable Opinion
Data collection arrangements
Data to be stored includes: demographic data (age, BMI, FEV1%); results of questionnaires screening for symptoms of depression and anxiety, in addition to data from questionnaires assessing social functioning, health outcomes, medication adherence, and individual strengths and difficulties; parent-obtained school attendance data.
We intend to take the census annually for 5 academic years, commencing in 16/17. We propose to administer the measures between March and June each year, to avoid potential summer and winter peaks and troughs in patients' health. Data will be collected via six well-validated questionnaires completed by all parents and children over 12 years of age. Parent questionnaires will be a combination of proxy measures (talking about their child) and measures concerning their own psychosocial wellbeing. Parents will also be asked to provide their child's school attendance data.
Research programme
Young people with Cystic Fibrosis (CF) and their parents may be at increased risk for depression and anxiety, and elevated symptom scores have been associated with negative health outcomes such as compromised adherence, reduced quality of life, and increased healthcare use. Children with chronic illness have been found to demonstrate a higher rate of emotional and behavioural problems and have greater odds of low school attainment. In collecting various psychosocial data from our cohort over a five year period it is hoped that this would permit the identification of any children or families in need of psychological input, and highlight to the CF team any who may be particularly struggling. Analysing this data would permit the identification of potential relationships between psychosocial factors that may indicate a higher risk of distress or disruption, although it is acknowledged that the data will be collected from a single centre and therefore generalisations to the wider CF community may be limited.
Research database title
Leeds Paediatric Cystic Fibrosis Unit: Annual Psychosocial Review
Establishment organisation
Leeds Teaching Hospitals NHS Trust
Establishment organisation address
Leeds General Infirmary
Great George Street
Leeds, West Yorkshire
LS1 3EX