Improving healthcare transition for young people with cancer: factors fundamental to the quality improvement journey.

BACKGROUND: Young people receiving cancer treatment in the South Thames Children's, Teenagers' and Young Adults' Cancer Operational Delivery Network usually receive care across two or more NHS trusts, meaning transition into adult services can be challenging. AIM: To develop a planned, co-ordinated approach to transition across the network that meets National Institute for Health and Care Excellence guidance recommendations for transition and the cancer service specifications. METHODS: A 2-year, nurse-led quality improvement (QI) project, using the principles of experience-based co-design. OUTCOMES: The QI project resulted in the development of six key principles of practice; refining and testing of a benchmarking tool; initiatives to facilitate first transition conversations; and the launch of an information hub. CONCLUSION: Robust QI processes, cross-network collaboration and wide stakeholder involvement required significant resource, but enabled deeper understanding of existing pathways and processes, facilitated the establishment of meaningful objectives, and enabled the testing of interventions to ensure the project outcomes met the needs of all stakeholders.

Transition of young people from children's into adults' services: what works for whom and in what circumstances - protocol for a realist synthesis.

INTRODUCTION: The process of transitioning young people from children's or adolescents' health services into adults' services is a crucial time in the lives and health of young people and has been reported to be disjointed rather than a process of preparation in which they are involved. Such transitions not only fail to meet the needs of young people and families at this time of significant change, but they may also result in a deterioration in health, or disengagement with services, which can have deleterious long-term consequences. Despite the wealth of literature on this topic, there has yet to be a focus on what works for whom, in what circumstances, how and why, in relation to all young people transitioning from children's into adults' services, which this realist synthesis aims to address. METHODS AND ANALYSIS: This realist synthesis will be undertaken in six stages: (1) the scope of the review will be defined; (2) initial programme theories (IPTs) developed; (3) evidence searched; (4) selection and appraisal; (5) data extraction and synthesis; and (6) finally, refine/confirm programme theory. A theory-driven, iterative approach using the 'On Your Own Feet Ahead' theoretical framework, will be combined with an evidence search including a review of national transition policy documents, supplemented by citation tracking, snowballing and stakeholder feedback to develop IPTs. Searches of EMBASE, EMCARE, Medline, CINAHL, Cochrane Library, Web of Science, Scopus, APA PsycINFO and AMED will be conducted from 2014 to present, supplemented with grey literature, free-text searching (title, abstract and keywords) and citation tracking. Data selection will be based on relevance and rigour and extracted and synthesised iteratively with the aim of identifying and exploring causal links between contexts, mechanisms and outcomes. Results will be reported according to the Realist And Meta-narrative Evidence Syntheses: Evolving Standards Quality and Publication Standards. ETHICS AND DISSEMINATION: This realist synthesis forms part of the National Transition Evaluation Study, which has received ethical and regulatory approval (IRAS ID: 313576). Results will be disseminated through peer-review publication, conference presentations and working with healthcare organisations, stakeholder groups and charities. TRIAL REGISTRATION NUMBER: NCT05867745. PROSPERO REGISTRATION NUMBER: CRD42023388985.

North Thames multi-centre service evaluation: Ethical considerations during COVID-19.

Objectives: During the COVID-19 pandemic, healthcare resources including staff were diverted from paediatric services to support COVID-positive adult patients. Hospital visiting restrictions and reductions in face-to-face paediatric care were also enforced. We investigated the impact of service changes during the first wave of the pandemic on children and young people (CYP), to inform recommendations for maintaining their care during future pandemics. Design: A multi-centre service evaluation was performed through a survey of consultant paediatricians working within the North Thames Paediatric Network, a group of paediatric services in London. We investigated six areas: redeployment, visiting restrictions, patient safety, vulnerable children, virtual care and ethical issues. Results: Survey responses were received from 47 paediatricians across six National Health Service Trusts. Children's right to health was largely believed to be compromised by the prioritisation of adults during the pandemic (81%; n = 33). Sub-optimal paediatric care due to redeployment (61%; n = 28) and the impact of visiting restrictions on CYP's mental health (79%; n = 37) were reported. Decreased hospital attendances of CYP were associated with parental fear of COVID-19 infection-risks (96%; n = 45) and government 'stay at home' advice (89%; n = 42). Reductions in face-to-face care were noted to have disadvantaged those with complex needs, disabilities and safeguarding concerns. Conclusion: Consultant paediatricians perceived that paediatric care was compromised during the first wave of the pandemic, resulting in harm to children. This harm must be minimised in subsequent pandemics. Recommendations for future practice which were developed from our findings are provided, including maintaining face-to-face care for vulnerable children.

The experiences and perceptions of users of an electronic patient record system in a pediatric hospital setting: a systematic review.

CONTEXT: With the ever-increasing need for digital health innovations, the transition to electronic patient records (EPR) is an integral part of the digital health revolution. There is an increasing body of literature on EPR use in the adult hospital setting, particularly related to adoption as a result of financial incentives in the United States (US). The experiences and perceptions of EPR users within the pediatric hospital setting are less well understood, despite the advent of patient portals accessible by children and young people (CYP) and their parents, which bring new benefits and challenges for them and healthcare professionals alike. OBJECTIVES: The aim of this review was to understand the experiences and perceptions of all relevant stakeholders using an EPR system in the pediatric hospital setting, including the use of an EPR-linked patient portal. METHODS: Studies were identified through electronic database and citation searching, following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. A systematic search was conducted in EMBASE, EMCARE, MEDLINE, Cochrane Library, Web of Science, Scopus, CINAHL, and PsycINFO electronic databases to identify literature published 2010-present, in addition to manual searching of conference abstracts, and research reports searched via the Health Research Authority website. Inclusion criteria were studies reporting on an EPR system in use in hospital setting where child patients (from 0 to 17.9 years) are cared for, with or without an EPR-linked patient portal. RESULTS: Thirty-six out of 42,946 articles were eligible for inclusion, almost two-thirds were studies conducted in the US. A wide range of benefits, challenges, and information and support needs were reported. Strategies for successful implementation and design improvements were suggested, as was desirable portal functionality and parental intention to use, or reasons for not using the portal. Several ethical and legal issues were raised. CONCLUSIONS: Experiences of using EPRs and patient portals were wide-ranging with challenges more prevalent soon after implementation. Although tailoring information and support to users' individual needs and practice context can be complex, this is essential to enable prolonged utility, user satisfaction and engagement, which, in turn, will promote effective care provision. Disease-specific portals may increase utility, and taking into consideration children's and young people's needs and preferences is essential.