CompletedInterventional

A study to evaluate how a new support program improves well-being in children and young people with sickle cell disease

Sickle cell disease is an inherited blood condition that can cause pain, tiredness, and frequent hospital visits. These challenges can take a toll on a young person's emotional well-being. This study at the Royal London Hospital explores whether a new support programme can help children and young people aged 7 to 17 feel more confident and supported. The programme combines practical technology with emotional and social support. Young participants receive a handheld device with a special health app. They also attend hospital sessions led by specialist nurses and psychologists. Crucially, they are paired with adult mentors who also live with sickle cell disease and can share real-life advice. Adults with sickle cell disease can also join the study as mentors after receiving coaching training. The goal is to see if learning from peers and healthcare professionals together improves daily quality of life.

At a glance

Status

Completed

Sponsor

Barts Health NHS Trust

Enrolment target

Start

26 Nov 2018

Estimated completion

26 Nov 2018

Sickle cell disease

What is this study about?

Sickle cell disease affects red blood cells, which can become stiff and block blood flow. This leads to sudden pain episodes, fatigue, and other health problems. For children and teenagers, living with a long-term condition can also affect school life, friendships, and mental health. While medical treatments are essential, young people often need extra emotional and social support to help them cope with daily challenges.

This study evaluates a whole-person support programme designed specifically for young people with sickle cell disease. Instead of focusing only on medical care, the programme brings together education, psychology, digital technology, and peer mentoring. The aim is to give young people the tools and confidence they need to understand their condition and look after their own well-being.

A key part of the programme is the connection between younger patients and adult mentors who also have sickle cell disease. Talking to someone who has faced the same struggles can reduce feelings of isolation. Alongside these mentoring chats, participants work with a specialist nurse and psychologist to learn helpful coping techniques.

Researchers hope this study will show whether combining peer support with professional guidance makes a real difference to young people's quality of life. If successful, similar support programmes could be introduced across the NHS to help more families living with sickle cell disease.

Key takeaways

Tests a combined support programme using a mobile app, healthcare advice, and peer mentoring.
Open to children and teenagers aged 7 to 17 with sickle cell disease.
Adults with sickle cell disease aged 18 and over can take part as trained mentors.
Involves five visits to the Royal London Hospital with no new medicines involved.
Designed to improve emotional well-being, confidence, and daily coping skills.

Who may be eligible?

This study has roles for two groups of participants: young people receiving support (mentees) and adults providing support (mentors). To join as a mentee, a young person must be between 7 and 17 years old and have a confirmed diagnosis of sickle cell disease. Both the young person and their parent or guardian must agree to take part.

To join as an adult mentor, participants must be aged 18 or older and also have a diagnosis of sickle cell disease. Mentors must be willing to undergo coaching training and pass a standard background check (a Disclosure and Barring Service, or DBS check) because they will be working with children.

People cannot take part if they have had a severe, sudden illness within the past month or if they are currently pregnant. The study is also not suitable for individuals with severe learning or cognitive difficulties that would make participating in the sessions too challenging.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

You (or your child) have a confirmed diagnosis of sickle cell disease.
The young person taking part is aged between 7 and 17 years old.
Adults wishing to mentor are aged 18 or older and happy to complete a DBS background check.
You have not had a severe, sudden illness in the last month.
The participant is not currently pregnant.
You can travel to the Royal London Hospital for five scheduled visits.

Answer every question to see your result.

What does participation involve?

Taking part in the study involves attending the Royal London Hospital for five visits. At the first visit, participants meet the study team and fill out some simple questionnaires about their daily life and feelings. Young people are given a handheld device with a pre-loaded health app to take home, along with instructions on how to use it.

During the visits, young participants take part in friendly education and psychology sessions run by a specialist nurse and a psychologist. They also spend time talking with adult mentors who share their personal experiences of living with sickle cell disease. Adult mentors receive training beforehand to help them support the young people effectively. At the end of the programme, participants fill out follow-up questionnaires to see whether the support helped improve their well-being. No new medications or medical procedures are involved.

Potential risks and benefits

Participants may benefit from learning practical coping skills, discovering new ways to manage their health, and talking with others who truly understand life with sickle cell disease. However, taking part requires committing time to five hospital visits, which may interrupt school, work, or family routines. Talking about health worries or difficult experiences can also bring up sad or uncomfortable feelings, though trained psychologists and nurses are always present to help. Joining the study is entirely voluntary, and participants can leave at any time without it affecting their normal NHS care.

Locations (1)

Some site locations are approximate. We're improving this — please verify with the trial team before travelling.

Barts Health NHS Trust
Unverified
London, England

Common questions

Does this trial test any new drugs or medical treatments?

No. The study does not test any medicines. It focuses entirely on emotional support, education, an app, and peer mentoring.

Where does the study take place?

All five study sessions take place at the Royal London Hospital in London.

Do parents need to give permission for their child to join?

Yes. Parents or guardians must give their formal consent, and the young person must also agree that they want to take part.

What is a DBS check for adult mentors?

A DBS check is a standard UK criminal record check used to make sure adults are safe to work and volunteer with children.

Can I leave the study if it takes up too much time?

Yes. You can stop taking part at any point. Your decision will not change the standard of healthcare you or your child receive.

How to find out more

Banu Kaya

banukaya@nhs.net +44 203 246 0352 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.