RESUMEN
BACKGROUND: The transition from paediatric to adult care poses a significant health system-level challenge impeding the delivery of quality health services for youth with chronic health conditions. In Canada and globally, the transition to adult care is regarded as a top priority in adolescent health in need of readily applicable, adaptable, and relevant national metrics to evaluate and benchmark transition success across disease populations and clinical care settings. Unfortunately, existing literature fails to account for the lack of engagement from youth and caregivers in developing indicators, and its applicability across chronic conditions, primary care involvement, and health equity considerations. OBJECTIVE: Our proposed study aims to establish a consensus-driven set of quality indicators for the transition to adult care that are universally applicable across physical, developmental, and/or mental health conditions, clinical care settings, and health jurisdictions. METHODS: Using an integrated knowledge translation (iKT) approach, a panel comprised of youth, caregivers, interdisciplinary healthcare providers, and health system leaders will be established to collaborate with our research team to ensure the study methodology, materials, and knowledge dissemination are suitable and reflect the perspectives of youth and their families. We will then conduct an iterative 3-round Online Modified Delphi (OMD) study (n= 160) to (1) compare and contrast the perspectives of youth, caregivers, health care providers, and health system leaders on quality indicators for transition, and (2) prioritize a key set of quality indicators for transition applicable across disease populations that are the most important, useful, and feasible in the Canadian context. Using the RAND/UCLA Appropriateness Method (RAM) multi-stage analytic approach, data from each panel and stakeholder group will be examined separately and compared to establish a key set of indicators endorsed by both panels. RESULTS: The study is funded by the Canadian Institutes of Health Research and Physicians Services Incorporated. CONCLUSIONS: This study will produce quality indicators to evaluate and inform action equitably to improve transition from paediatric to adult care for youth and their families in Canada.
RESUMEN
INTRODUCTION: Patient engagement and integrated knowledge translation (iKT) processes improve health outcomes and care experiences through meaningful partnerships in consensus-building initiatives and research. Consensus-building is essential for engaging a diverse group of experienced knowledge users in co-developing and supporting a solution where none readily exists or is less optimal. Patients and caregivers provide invaluable insights for building consensus in decision-making around healthcare, policy and research. However, despite emerging evidence, patient engagement remains sparse within consensus-building initiatives. Specifically, our research has identified a lack of opportunity for youth living with chronic health conditions and their caregivers to participate in developing consensus on indicators/benchmarks for transition into adult care. To bridge this gap and inform our consensus-building approach with youth/caregivers, this scoping review will synthesise the extent of the literature on patient and other knowledge user engagement in consensus-building healthcare initiatives. METHODS AND ANALYSIS: Following the scoping review methodology from Joanna Briggs Institute, published literature will be searched in MEDLINE, EMBASE, CINAHL and PsycINFO databases from inception to July 2023. Grey literature will be hand-searched. Two independent reviewers will determine the eligibility of articles in a two-stage process, with disagreements resolved by a third reviewer. Included studies must be consensus-building studies within the healthcare context that involve patient engagement strategies. Data from eligible studies will be extracted and charted on a standardised form. Abstracted data will be analysed quantitatively and descriptively, according to specific consensus methodologies, and patient engagement models and/or strategies. ETHICS AND DISSEMINATION: Ethics approval is not required for this scoping review protocol. The review process and findings will be shared with and informed by relevant knowledge users. Dissemination of findings will also include peer-reviewed publications and conference presentations. The results will offer new insights for supporting patient engagement in consensus-building healthcare initiatives. PROTOCOL REGISTRATION: https://osf.io/beqjr.
Asunto(s)
Cuidadores , Consenso , Participación del Paciente , Humanos , Investigación Biomédica Traslacional , Literatura de Revisión como Asunto , Proyectos de Investigación , Transición a la Atención de AdultosRESUMEN
Paediatric health care providers (HCPs) play an important role in optimizing bone health. Early intervention is essential to maximize the accrual of peak bone mass in adolescence and young adulthood and to reduce osteoporosis and fracture risk later in life. Children and adolescents with chronic health conditions may have several risk factors for poor bone health, including underlying inflammatory conditions, reduced weight-bearing activity, delayed puberty, and inadequate intake of calcium and vitamin D. Some medications-particularly glucocorticoids-can compromise bone mass and place a child at risk for fragility fractures. This practice point describes a targeted approach to identifying bone health risk factors in children and youth with chronic health conditions, highlights office initiatives aimed at optimizing bone mass accrual, and links HCPs to useful web-based tools and medical references. Indications for referral to a bone health specialist and bone-specific pharmacotherapeutic interventions are also reviewed.
RESUMEN
Les professionnels de la santé des enfants jouent un rôle important dans l'optimisation de la santé osseuse. Il est essentiel d'intervenir rapidement pour maximiser le pic de masse osseuse à l'adolescence et au début de l'âge adulte et d'ainsi réduire le risque d'ostéoporose et de fractures plus tard dans la vie. Les enfants et les adolescents ayant une affection chronique peuvent présenter plusieurs facteurs de risque de mauvaise santé osseuse, notamment des maladies inflammatoires sous-jacentes, des activités avec mise en charge limitées, un retard pubertaire et un apport insuffisant de calcium et de vitamine D. Certains médicaments, et particulièrement les glucocorticoïdes, peuvent compromettre la masse osseuse et exposer l'enfant à un risque de fractures de fragilisation. Le présent point de pratique décrit une approche ciblée pour déterminer les facteurs de risque liés à la santé osseuse chez les enfants et les adolescents ayant une affection chronique, expose les mesures à prendre en cabinet pour optimiser l'acquisition de la masse osseuse et propose des outils en ligne utiles et des références médicales à l'intention des professionnels de la santé des enfants. Les indications pour diriger les patients vers un spécialiste de la santé osseuse et pour procéder à des interventions pharmacologiques visant les os sont également abordées.