Recipient organisationNIHR University College London Hospitals Biomedical Research Centre
NIHR supportRecorded as supported by this research centre
PeriodFeb 2025 — Jan 2026
In plain English
AI plain-English summary
Children prescribed a new weekly growth hormone injection are missing up to half their doses, and a new study will track exactly why. This matters because growth hormone deficiency (GHD) in children, if undertreated, can permanently stunt growth and delay development. Daily injections are often skipped due to pain, forgetfulness, or needle anxiety, and the switch to a weekly formulation may not automatically solve these problems. The study will follow 70 children aged 3–16 years and their caregivers for six months, using surveys at two, 12, and 24 weeks, plus in-depth interviews with 25 patient-caregiver pairs. It will measure actual adherence rates and identify specific barriers—whether practical (forgetting, injection technique) or psychological (fear, dislike of the device). If successful, the findings could directly change clinical practice: doctors would know which children are likely to struggle with weekly injections and could offer tailored support—such as reminder apps, injection training, or alternative delivery methods—before growth is compromised. This is applied health services research with a clear, near-term impact on treatment guidelines and patient quality of life.
View original technical description
We know that many children prescribed daily injectable growth hormone treatment for growth hormone deficiency do not take all the doses they are prescribed, meaning that they don’t get the full potential benefit of treatment. The reasons behind this nonadherence are complex and include them not being able to take it (e.g. because the child or caregivers forget to administer the injections), or because they choose not to (e.g. because of injection pain). The aim of this project is to evaluate if patients take a new weekly injectable growth hormone deficiency (GHD) treatment as their doctor recommends and factors that influence how they use the treatment.We will gather information about the experiences of 70 children (aged 3-16 years) with GHD prescribed a new weekly medication and/or their caregivers using both surveys and interviews to evaluate rates of medication taking, and barriers and facilitators to medication taking. Potential participants will be asked if they are interested in taking part after they have been prescribed a new growth hormone treatment by a clinician involved in their routine care. Participants who have expressed interest in the study will then be contacted by a researcher with more information about the study and to obtain informed consent (and assent for child participants). Consenting participants will be sent a link to an online survey two weeks, 12 weeks and 24 weeks after the new prescription of weekly growth hormone treatment. If they would prefer to complete via telephone, a time will be arranged with the researcher to complete the survey over the phone. In the survey we will collect information about treatment experiences and behaviours using standardised scales. Six months after prescription, 25 patient-caregiver pairs will be re-contacted and if they consent, will be interviewed online or via telephone to explore adherence and nonadherence experiences in depth.
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