BIOPS
Research type
Research Study
Full title
An interventional study to evaluate impact on patient perceived well-being of an innovative model of biopsychosocial support for children and young people living with sickle cell disease.
IRAS ID
217377
Contact name
Banu Kaya
Contact email
Sponsor organisation
Barts Health NHS Trust
Duration of Study in the UK
1 years, 0 months, 0 days
Research summary
Sickle cell disease (SCD) is an inherited disorder of haemoglobin production and function. This is a chronic condition where life expectancy is reduced. Children and young people living with SCD have multiple biological, psychological and social needs.
Various self-management interventions are available but their impact is not clear.
We propose an innovative multimodal model of care that will address the biological, psychological and social needs of children and young people living with sickle cell disease. This will be a pilot study.
The intervention being investigated has three separate but related components:
Biological. A digital application (App) will be used which would allow patients to record details of pain events, medical appointments, treatment plans and treatment adherence in a diary. Usage of this data will be captured. The study participant will have the option of sending an email describing their progress. At the end of the study feedback from patients will be used to design and commission a bespoke APP for routine use.
Psychological. The model would offer two group interventions for this population. The sessions would utilise the skills of a Clinical Psychologist, Clinical Nurse Specialist, and mentor. The first group would be a two-hour session offered to seven to 13 year olds. The second will be Cognitive behavioural therapy (CBT) intervention for 14 to 17 year olds. This would include addressing self-management and stigma. There will be three sessions, eight weeks apart.
Social. A mentorship scheme would recruit suitable adults living with SCD who would be asked to come to talk to and inspire young patients, and to provide them with on-going social support for managing their condition. These mentors would be identified from the adult population accessing haematology services at the Royal London Hospital, and would be provided with formal training in mentoring skills.REC name
London - Chelsea Research Ethics Committee
REC reference
17/LO/0900
Date of REC Opinion
22 Sep 2017
REC opinion
Further Information Favourable Opinion