Sze May Ng

Aims: To systematically review and synthesise findings from qualitative studies regarding the transition process and transfer from paediatric to adult diabetes care, including perceived strengths and limitations of transition practices. Synthesising qualitative evidence from key stakeholders offers an opportunity to better understand how transition readiness is experienced, how it may influence engagement and outcomes, and why transition programs vary in effectiveness across settings. Methods: Qualitative evidence synthesis was completed of the diabetes transition process with articles published in English between 2018 and 2023, which is in line with our previously published quantitative systematic review. Studies were systematically identified and screened by searching six databases and PRISMA criteria were used. Search terms included the following MESH headings and keywords: (type 1 diabetes OR type 2 diabetes OR diabetes mellitus) AND (transfer to adult care OR transition to adult care OR transition readiness). Risk of bias and quality assessments were performed using the Critical Appraisal Skills Programme. Both the strengths of weaknesses of each transition programme were extracted, as well as data integration across studies using a thematic synthesis approach. Results: In total, 15 publications were included of which two‐thirds were from North America. Data were obtained from patients, parents/caregivers and healthcare professionals, using semi‐structured interviews, surveys and focus groups, covering the full transition period. Three key themes were identified: (1) Expectation of greater autonomy/independence for the person with diabetes (PWD), (2) Loss of paediatric provider and insecurity about new healthcare provider (HCP), and (3) Lack of formal preparation for the transition from paediatrics to adult care. Perceived strengths and weaknesses of the different transition programmes underscore the need for a proactive approach, supporting a smooth transfer and facilitating the young person's independence and self‐management capacity. Conclusions: This systematic review of qualitative studies highlights the need to address the unique challenges of adolescents and young adults when transferred from paediatric to adult diabetes care and improve quality transition programmes. A smooth transition process demands a personalised approach from HCPs and system‐level coordination across care teams is essential for supporting successful engagement within adult diabetes care.

Purpose: Tailored interventions that account for the developmental stage and learning style of children and young people with type 1 diabetes (CYPWD) can optimise diabetes management and wellbeing. This study aimed to listen directly to CYPWD to determine which research mattered most to them, asking how they could be meaningfully involved in shaping research priorities in a way that reflects their developmental stage, needs, and preferences, rather than those assumed on their behalf by clinicians, parents, or researchers. Methods: Conducted by Diabetes UK in collaboration with the University of East London, this qualitative study explored the needs of CYPWD to better manage their condition. Focus groups with 21 participants aged 6– 17 from England, Wales, and Scotland examined challenges across home, school, and leisure settings, prioritising their voices. Data were analysed thematically using NVivo 12 alongside a prioritisation matrix. Results: Priorities varied significantly by age group. Children aged 6– 8 prioritised managing glucose levels at home and educating catering staff. Those aged 9– 11 prioritised easier-to-change insulin pumps and educating friends about the condition. The 12– 14 age group focused on educating teachers, creating safe spaces for managing hypoglycaemia, and raising awareness of the effects of sport and mood fluctuations. Young people aged 15– 17 sought to reduce the burden of educating others about diabetes at school. Conclusions: This study offers valuable insight into the needs and priorities of CYPWD, providing a foundation for future, developmentally tailored research. Understanding these priorities can help shape strategies and policies better aligned with their lifestyles and expectations, supporting improved self-management, reduced risk of health crises, and better wellbeing as they grow older with diabetes. While clinical outcomes were not directly measured, priorities such as better pump design and improved school support are likely, based on established evidence, to improve adherence and reduce acute complications. Plain Language Summary: What Do We Already Know? Children and young people with diabetes are rarely asked directly what matters most to them in research. Existing evidence mostly reflects what clinicians and parents think is important, with little insight into how children and young people themselves experience living with type 1 diabetes. What Did We Want to Find Out? What do children and young people with type 1 diabetes think research should focus on, based on their experiences at home, school, and leisure? How can this shape future research and support? What Did We Find? We spoke to 21 children and young people aged 6– 17 from England, Wales, and Scotland, in four focus groups run by Diabetes UK and overseen by the University of East London. Using age-appropriate activities, priorities differed by age: children aged 6– 8 prioritised managing blood sugar at home and ensuring school staff, such as dinner staff, understood diabetes; those aged 9– 11 wanted easier-to-use insulin pumps and help with friends understanding the condition; the 12– 14 age group focused on better teacher understanding, safe spaces at school, and understanding how sport and emotions affect blood sugar; and young people aged 15– 17 sought to reduce the burden of educating others, receive diabetes-aware career advice, and gain more independence. Across all ages, participants described stigma, misunderstanding by school staff, frustration with parental control, and unreliable technology. How Might This Impact Clinical Practice? These findings offer Diabetes UK and research commissioners actionable insight to shape funding and policy — improving school support, educator training, technology design, and self-management strategies aligned with what children and young people actually prioritise.

Background: Persistent inequities in access to diabetes technologies remain evident among children and young people (CYP) with type 1 diabetes (T1D), particularly among those from ethnic minority groups and socioeconomically deprived areas. The UK UNBIASED study identified barriers including limited awareness, language and communication challenges, inconsistent service delivery and reduced confidence in healthcare interactions. Methods: To respond to, and support dissemination and implementation of these findings, a series of stakeholder consultation and public engagement activities was undertaken involving CYP with lived experience of diabetes, their families, diabetes healthcare professionals, diabetes networks and voluntary sector partners. These activities informed the co‐production and refinement of culturally inclusive actionable recommendations, educational and dissemination resources for healthcare professionals, CYP and families, including visual materials, animation, video poem and CYP‐informed communication tools. A participatory approach to public engagement was adopted to create culturally inclusive and accessible resources for healthcare professionals and CYP and families. Early evaluation drew on website analytics, social media metrics, dissemination records and informal stakeholder feedback. Results: Stakeholder consultation and co‐production activities, informed by findings from the UNBIASED study, brought together young people, caregivers, healthcare professionals in diabetes and designers to create culturally responsive educational tools, including visual materials, infographics, youth‐led videos and culturally adapted animations. These were disseminated through a strategically developed distribution plan involving local NHS services, grassroots organisations, national diabetes networks and trusted community spaces. Youth ambassadors, diabetes family networks, diabetes national networks and diabetes advocacy groups further extended the reach through social media outreach and interactive peer support sessions. Conclusion: Co‐produced, culturally inclusive resources and targeted dissemination provide a promising starting point for improving awareness and engagement around diabetes technology equity. However, these early indicators of reach and engagement do not yet demonstrate implementation or improved uptake. Longer‐term audit and evaluation are required to determine whether this approach reduces disparities in technology access and outcomes.

Background: Neurodiversity is an umbrella term encompassing multiple diagnoses including attention‐deficit/hyperactivity disorder (ADHD) and autistic spectrum conditions. Current research is limited but highlights the complexities faced by caregivers who often face unique challenges in managing Type 1 diabetes (T1D). Little is known within the literature of the experiences of children and young people (CYP) and their caregivers where both diagnoses co‐exist and how these translate to their day‐to‐day T1D management. This study aims to understand the perceived burdens of neurodiversity for CYP and their caregivers in managing their T1D. Methods: A qualitative methodology of semi‐structured in‐depth interviewing was used to explore the barriers, challenges, perceptions and impact on quality‐of‐life managing diabetes with neurodiversity. A thematic analysis was used to analyse the data. Results: Fifteen CYP (age range 12–18 years) and 13 parents caregivers were interviewed. All CYP had a diagnosis of autism, ADHD or both. Common themes identified were related to caregivers needing to adapt routines to meet individual needs. Family support was central to diabetes management. Sleep disturbance related to fear of hypoglycaemia was common, but continuous glucose monitoring improved sleep quality and reduced anxiety. Diabetes technologies, were widely perceived to reduce burden, enhance confidence and support self‐management, despite occasional sensory challenges. Caregivers expressed concerns about limited tailored resources. CYP were worried about transition to adult services. Both CYP and caregiver experiences at diagnosis were generally negative, particular issues being change in routine, fingerpricks and hospital settings. CYP did not view neurodiversity as a barrier to self‐managing their own diabetes. Conclusion: Caregivers demonstrate resilience in managing and navigating challenges and CYP did not see their neurodiversity as a barrier to managing their T1D. Diabetes technologies were viewed as improving quality of life. Day‐to‐day coping strategies varied between CYP and caregivers. Effective T1D management in CYP with neurodiversity necessitates that healthcare providers are trained to understand and address the specific needs of neurodiversity. This includes adapting communication strategies and developing individualised care plans. Future research is needed to develop tailored interventions and support systems specifically for CYP with T1D and neurodiversity.

Young adulthood is a period of significant and unique physiological, psychological, sexual, and social upheaval. Related challenges can have an impact on effective diabetes self-management, with high rates of unplanned health care use recorded for many, and consequent increases in the risks of premature morbidity and mortality. Health care professionals need guidance in delivering transition support for adolescents and young adults with diabetes. This would help to facilitate the formulation and implementation of local policies and procedures, enabling guidelines to be translated into practice and improving transition of care readiness. This led the International Society for Pediatric and Adolescent Diabetes (ISPAD), the European Association for the Study of Diabetes (EASD), and the American Diabetes Association (ADA) to convene a working group to produce a consensus report on the transition from pediatric to adult diabetes health care services. The ACCORD and AGREE II recommendations for the development of consensus reports and clinical guidelines, respectively, were followed. Existing diabetes-specific recommendations on the transition of care, published statements, a prior position paper, general recommendations, and online toolkits were initially identified and reviewed. Current evidence was then systematically reviewed, supplemented with primary data on the perceptions and experiences of health care professionals and of people with diabetes and their caregivers from global surveys. Evidence with a grading of A or B was automatically included in the consensus statements; evidence with a C or E grading was subjected to a Delphi survey for validation. Consensus was obtained for 31 statements on the full transition of care continuum and the three unique stages of pre-transfer, transfer, and post-transfer. This consensus report should be viewed as a guide and adjusted to local settings.

Background Paediatric research is critical for evidence-based clinical care and public health policy, yet children remain under-represented in UK biomedical research. Despite comprising 20% of the population, only a small proportion of research funding at 5% is directed towards child health and the clinical–academic paediatric workforce has contracted over time. Limited protected research time, inadequate infrastructure and inconsistent training pathways have further constrained clinician-led research and the development of future academic paediatricians. Objective The Royal College of Paediatrics and Child Health undertook a national survey of paediatricians to characterise current research engagement, identify barriers to participation and provide evidence to inform strategies for strengthening child health research capacity. Methods A cross-sectional national survey combining quantitative and qualitative questions was disseminated via the Royal College of Paediatrics and Child Health. Data collected included respondent demographics, research activity, perceived barriers and facilitators, access to training and infrastructure support. Thematic analysis was performed on qualitative responses. Results 404 respondents including paediatric consultants, paediatric trainees, specialty doctors and clinicians in child health participated in the survey. 63% reported engagement in some research activity, yet only 21% had protected research time. Key barriers included lack of time (76%), uncertainty about how to initiate research proposals (49%) and lack of confidence (32%). Respondents demonstrated strong intrinsic motivation for research. Conclusions High motivation for research exists among UK paediatric clinicians, but structural barriers severely limit research capacity. Urgent national action is required to address funding, workforce, infrastructure and training gaps to sustain and grow the child health research workforce.

Introduction: Topical oestradiol gel is now widely used in hormone replacement therapy (HRT), but the risk of inadvertent secondary transfer to children is under-recognised. While accidental exposure to testosterone gels has been documented, oestradiol gel transfer as a cause of precocious puberty in prepubertal girls is rare. We undertook a 20-year literature review and discuss the case of a 5-year-old girl presented with Tanner stage 3 breast development, pubic hair stage 2, growth acceleration and mood changes. Laboratory evaluation revealed markedly elevated oestradiol levels with suppressed gonadotrophins, consistent with peripheral precocious puberty. Bone age was advanced by 4 years 6 months. Imaging, karyotype, endocrine and dermatology investigations excluded central precocious puberty, ovarian or adrenal tumours and McCune-Albright syndrome. History, previously not disclosed, revealed daily co-sleeping with her mother, who had been applying oestradiol gel to her upper arms for 18 months as part of HRT. No other oestrogen sources were identified. Maternal oestradiol gel was discontinued and replaced with a transdermal patch. The child’s oestradiol levels normalised and pubertal signs regressed over subsequent months. This review highlights a rare but important cause of peripheral precocious puberty due to unintentional transfer of topical oestradiol gel through routine parent-child contact, including co-sleeping. As topical hormone therapies become increasingly common, clinicians must counsel patients on safe application practices and consider exogenous hormone exposure in children presenting with unexplained pubertal development. Switching caregivers from gel to patch formulations can reverse hormone excess in exposed children.