Understanding and improving treatment adherence in paediatric growth hormone deficiency

Student thesis: Doctoral ThesisDoctor of Philosophy


The aim of the PhD thesis was to investigate and identify the key potentially modifiable factors associated with treatment non-adherence in paediatric GHD and use this information to design and develop a novel adherence-focussed intervention. The purpose of this intervention was to help HCPs to better support children with growth hormone deficiencies and their families within routine clinical practice in order to engage and improve their adherence levels, gain the optimal clinical benefits from their prescribed treatment and self-manage their long-term condition more effectively.
A systematic review of adherence factors was initially conducted to explore the existing literature and identify the range of potentially modifiable factors found to be associated with non-adherence to rhGH treatment amongst paediatric GHD. Six studies were included in the review. The prevalence of non-adherence in the included studies varied from 7-71%. Key barriers associated with non-adherence included: the lack of knowledge and understanding of the condition and treatment, the discomfort and pain associated with injections, treatment interference issues, i.e. overnight sleepovers or travel activities and the quality of the HCP-patient relationship.
Secondly, a narrative review was undertaken to explore the existing interventional strategies that had been designed and developed to address and improve adherence to rhGH treatment for paediatric GH-deficient patients and their families. A total of fifteen interventional studies were included in the review and these were divided into two broad categories: novel injection devices and patient choice of device. Overall, the review revealed a lack of evidence-based, theory-driven intervention strategies, designed with the ability to target and manage the wide range of factors that had been found to be associated to treatment non-adherence amongst this population.
Following the review, a quantitative and qualitative study were conducted to explore and examine the range of factors which influence non-adherence to rhGH treatment amongst the parent/caregivers of children with GHD. The quantitative study sought to determine the prevalence rate of treatment non-adherence, as well as to investigate parents’/caregivers’ beliefs about their child’s condition, the prescribed treatment and their relationship with their HCP. 62% of parent/caregivers were found in this study to be non-adherent to the prescribed treatment regimen. Illness perceptions [identity, coherence and consequences] and treatment concerns were found to be significantly associated with treatment non-adherence, as was the quality of the HCP-parent/caregiver relationship. Within the qualitative study, fourteen interviews were performed which explored parents/caregivers’ perceptions and experiences of their child’s condition and rhGH treatment, as well as their perceived relationship with their HCP. Potentially modifiable factors found to influence non-adherence in this exploratory study were grouped under four core themes: Device Burdens, Treatment Considerations, Logistical Interferences and Interpersonal Influences.
The final chapter of the thesis details the development process of the Screen and Intervene Brief Adherence Intervention, which comprises of a Brief Adherence Screener and Training Manual and a face-to-face Training Workshop Session. This novel intervention aims to provide HCPs with the tools and strategies needed to be able to identify and address key adherence-related issues for each patient or parent/caregiver within their routine consultations and directly target adherence support in a personalised way, thus supporting the optimal use of prescribed rhGH treatment within endocrine clinical practice. To enable the successful implementation of the Brief Adherence Intervention into endocrine clinical practice, it is recommended that future research test and evaluate the feasibility and acceptability of the newly developed intervention within a clinical context. The study will establish how and whether the Brief Adherence Intervention can promote positive HCP behaviour-change and whether this can, in turn, result in effective and sustainable improvements in adherence and clinical health outcomes.
Date of Award1 Jul 2021
Original languageEnglish
Awarding Institution
  • King's College London
SupervisorJohn Weinman (Supervisor) & Vivian Auyeung (Supervisor)

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