HRQL and Health Behaviours in Paediatric SCD Populations (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
157322
Contact name
Christina Constantinou
Contact email
Research summary
Sickle Cell Disease (SCD) is a common genetically inherited blood disorder. Children with 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, environmental factors like school and spiritual beliefs. Physical symptoms and psychological and social factors may be managed, to a certain degree by engaging in daily health behaviours including a high protein diet and hydration and made worse by engaging in risky behaviours such as smoking and drinking alcohol. These behaviours have rarely been studied in paediatric SCD populations. Better understanding HRQL as well as identifying poor behaviours could help children with SCD and their parents improve their everyday lives through simple changes, for example drinking more water and taking part in less strenuous activities. The aims are to explore the HRQL and health behaviours of children with SCD aged 5-18 and also to explore the risky behaviours of older children with SCD aged 13-18 years. Comparisons will be made with healthy siblings. There is a potential eligible SCD population at the Evelina London Children’s Hospital of over 500 patients aged 5-18 years. Children with SCD and healthy siblings aged 5-12 years will be asked to take part in two drawing tasks (to facilitate the interview process) and an audio taped semi-structured interview which will last approximately 45 minutes. Children with SCD and healthy siblings aged 13-18 years will be asked to take part in a digitally recorded focus groups with up to four other children of the same age and sex which will last approximately one hour. These will mainly be conducted in a private waiting room at Evelina London Children’s Hospital and the semi-structured interviews may also take part in the homes of participants.
REC name
London - Hampstead Research Ethics Committee
REC reference
14/LO/1548
Date of REC Opinion
16 Sep 2014
REC opinion
Favourable Opinion