The Maintenance Medicines Project
Research type
Research Study
Full title
The Maintenance Medicines Project: Parents and caregivers' experience of medication reluctance in children and young people on maintenance phase treatment for acute lymphoblastic leukaemia.
IRAS ID
355330
Contact name
Jessica Schofield
Contact email
Sponsor organisation
Alder Hey Children’s Foundation NHS Trust
Duration of Study in the UK
0 years, 9 months, 1 days
Research summary
Acute lymphoblastic leukaemia (often shortened to ALL) is a blood cancer and the most common cancer in children. Children are most commonly diagnosed between 1-4 years of age. It is treated with different phases of treatment and the last phase, called “the maintenance phase”, lasts around 2 years. During the maintenance phase, chemotherapy and other medicines are given by mouth at home by the family themselves every day. This chemotherapy is very important to stop the cancer coming back. About a third of children and young people (often shortened to CYP) can be reluctant to take this medication which can be stressful for the family.
There has been little research specifically looking at reluctance to take medicines during the maintenance phase of ALL treatment. The aim of this project is to understand how often CYP can be reluctant to take their medicines, whether anything (like particular medicines, demographic information like age, previous unpleasant experiences etc) is associated with this reluctance and what helps families overcome reluctance. We also want to understand how reluctance to take medication affects CYP, their parents or caregivers and the wider family. We hope knowing those things can make maintenance treatment better for CYP and families.
The project involves parents or caregivers of CYP with ALL completing a questionnaire. Any parents or guardians of CYP who were under 18 years of age when diagnosed with ALL and are currently on maintenance treatment (having been on it at least 4 weeks) can take part. We will run the project only at one hospital, Alder Hey Children’s Hospital, over 9 months. The questionnaire responses will be analysed to see if we can answer the questions we have about maintenance.
REC name
London - Fulham Research Ethics Committee
REC reference
25/LO/0392
Date of REC Opinion
30 Jun 2025
REC opinion
Further Information Favourable Opinion