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
Summary of Research
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.Summary of Results
Building on previous research and interventions, the program aimed to provide holistic care through the fostering of a more integrated package of care that addressed the psychological, educational and social needs of children and young people living with sickle cell disease (SCD). Key objectives included strengthening partnerships across health, psychological services, and community sectors, promoting self-management, and improving the overall experience of care for patients.13 children and young people with SCD were recruited to the programme as mentees (age range 7-14, 7 male, 6 female). All except one had homozygous SCD. 4 adult patients were recruited as mentors (mean age 36 years). All but 1 had homozygous SCD.
The mentees were given handheld devices to access a bespoke APP and study visits enabled a team consisting of a specialist nurse, psychologist and 4 adult mentors to support the mentees with education, psychological support and peer mentoring.
All participants attended visit 1. Only 2 mentees were able to attend all 3 subsequent visits. Attendance at visits 2, 3, and 4 were as follows: V2 - 8 mentees, V3 - 5 mentees, V 4 – 2 mentees. Only 1 mentor was able to join for at least 3 of the 4 visits.
Those mentees who chose to use the APP were found it helped improve treatment adherence and improve access to health professionals to communicate their concerns.
The package of intervention had some impact on perceived childhood bio-psycho-social well-being: this was most evident with improvement in knowledge base, however there was no statistically significant difference to determine the true impact of the short duration of intervention.
Limitations:
The project was constrained by a significant period of interruption during the Covid pandemic March 2020 – Sept 2021. This led to a high drop out rate amongst trial participants and led to challenges scheduling visits which required group participation. The short intervention duration and follow up period likely limited full benefit of the intervention.Summary:
This project introduced a comprehensive care model to address the clinical, psychological, and social needs of children and young people living with sickle cell disease. This innovative model aimed to empower patients and their families, improve health outcomes, and offered a sustainable approach to managing SCD. The program's integration of technology, psychology, nursing and social support was well received and in the longer term could provide a promising step forward in chronic disease care.However, the significant interruption and challenges with participant retention rates impacted the final data analysis and interpretation of results. Further research into multi-modal approaches to health and social care are needed for patients living with SCD.
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