Examining HRQL and Health Behaviours in Paediatric SCD (Version 1)
Research type
Research Study
Full title
An Examination of Health-Related Quality of Life (HRQL) and Health Behaviours in Children and Adolescents with Sickle Cell Disease (SCD)
IRAS ID
211257
Contact name
Christina Constantinou
Contact email
Sponsor organisation
Middlesex University
Duration of Study in the UK
1 years, 2 months, 27 days
Research summary
Children with Sickle Cell Disease (SCD) suffer from physical symptoms such as severe pain and may also experience an impaired Health-Related Quality of Life (HRQL). HRQL takes into account a person’s physical health, psychological state, social factors and environmental factors like school. To some degree SCD may be helped by engaging in health behaviours, including hydration and regular but not strenuous physical activities, and made worse by engaging in risky behaviours such as drinking alcohol. These behaviours, and possible predictors of the behaviours, such as health beliefs, coping and disease severity, have rarely been studied in children with SCD and have not been examined in relation to HRQL. Better understanding of HRQL and health behaviours could help children with SCD and their parents improve their everyday lives through simple changes. The current study aims to examine: 1. if there is a relationship between the HRQL of children with SCD measured by child/adolescent self-report and parent proxy report; 2. the relationship between health behaviours and HRQL in children aged 5 to 18 years using self- and parental reports, 3. the relationship between risky behaviours and HRQL in adolescents aged 13 to 18 years, 4. the relationship between children’s/adolescents’ self-reported health beliefs and behaviours and parental health beliefs and reports of children’s/adolescents’ health behaviours 5. the predictors of health behaviours in children with SCD using self- and parental reports and 6. the predictors of alcohol use in adolescents with SCD. A population of over 750 children across participating National Health Service Trust hospitals in London will be contacted to achieve a sample size of at least 202. During the children’s outpatient clinical appointment the child and parent will complete questionnaires including the Pediatric Quality of Life Inventory and a health behaviour measure and children will also complete the Kids Coping Scale.
REC name
London - City & East Research Ethics Committee
REC reference
17/LO/0322
Date of REC Opinion
16 Mar 2017
REC opinion
Favourable Opinion