Implementation factors of non-communicable disease policies and programmes for children and youth in low-income and middle-income countries: a systematic review.

INTRODUCTION: Despite declared life-course principles in non-communicable disease (NCD) prevention and management, worldwide focus has been on older rather than younger populations. However, the burden from childhood NCDs has mounted; particularly in low-income and middle-income countries (LMICs). There is limited knowledge regarding the implementation of paediatric NCD policies and programmes in LMICs, despite their disproportionate burden of morbidity and mortality. We aimed to understand the barriers to and facilitators of paediatric NCD policy and programme implementation in LMICs. METHODS: We systematically searched medical databases, Web of Science and WHOLIS for studies on paediatric NCD policy and programme implementation in LMICs. Screening and quality assessment were performed independently by researchers, using consensus to resolve differences. Data extraction was conducted within the WHO health system building-blocks framework. Narrative thematic synthesis was conducted. RESULTS: 93 studies (1992-2020) were included, spanning 86 LMICs. Most were of moderate or high quality. 78% reported on paediatric NCDs outside the four major NCD categories contributing to the adult burden. Across the framework, more barriers than facilitators were identified. The most prevalently reported factors were related to health service delivery, with system fragmentation impeding the continuity of age-specific NCD care. A significant facilitator was intersectoral collaborations between health and education actors to deliver care in trusted community settings. Non-health factors were also important to paediatric NCD policies and programmes, such as community stakeholders, sociocultural support to caregivers and school disruptions. CONCLUSIONS: Multiple barriers prevent the optimal implementation of paediatric NCD policies and programmes in LMIC health systems. The low sociopolitical visibility of paediatric NCDs limits their prioritisation, resulting in fragmented service delivery and constraining the integration of programmes across key sectors impacting children, including health, education and social services. Implementation research is needed to understand specific contextual solutions to improve access to paediatric NCD services in diverse LMIC settings.

Access to novel drugs and therapeutics for children and youth: Eliciting citizens' values to inform public funding decisions.

INTRODUCTION: The unique evidentiary, economic and ethical challenges associated with health technology assessment (HTA) of precision therapies limit access to novel drugs and therapeutics for children and youth, for whom such challenges are amplified. We elicited citizens' perspectives about values-based criteria relevant to the assessment of paediatric precision therapies to inform the development of a child-tailored HTA framework. METHODS: We held four citizen panels virtually in May-June 2021, informed by a plain-language citizen brief summarizing global and local evidence about the challenges, policy and programmatic options and implementation strategies related to enhancing access to precision therapies for Canadian children and youth. Panellists were recruited through a nationally representative database, medical/patient networks and social media. We inductively coded and thematically analysed panel transcripts to generate themes and identify priority values. RESULTS: The perspectives of panellists (n = 45) coalesced into four overlapping themes, with attendant subthemes, relevant to a child-tailored HTA framework: (1) Childhood Distinctions: vulnerability, 'fair innings', future potential, family impacts; (2) Voice: agency of children and youth; lived versus no lived experience; (3) One versus Many: disease severity, rarity, equity, unmet need and (4) Health System Governance: funding, implementation inequities, effectiveness and safety. Participants broadly agreed that childhood distinctions, particularly family impacts, justify child-tailored HTA. Dissent arose over whose voice should inform HTA and how such perspectives are best incorporated. CONCLUSIONS: Citizens can offer unique insights into criteria relevant to the development or revision of HTA frameworks to capture holistic, societally responsive dimensions of value attached to unique contexts or populations, including children. Balancing the hopes and expectations of patients and caregivers for access to expensive but potential life-altering therapies against the opportunity costs borne by encompassing health systems is a fundamental challenge that will require rigorous methods to elicit, weigh and reconcile varied views. PATIENT OR PUBLIC CONTRIBUTION: A patient advocate served on the steering committee of this study and co-authored this article. Key informants for the Citizen Brief included patient advocates and caregivers; a separate patient advocate reviewed the Brief before dissemination. Qualitative and quantitative data were collected from the general public and caregivers of children, with written consent.