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Abstract Introduction Children with chronic conditions have greater health care needs than the general paediatric population but may not receive care that centres their needs and preferences as identified by their families. Clinicians and researchers are interested in developing interventions to improve family‐centred care need information about the characteristics of existing interventions, their development and the domains of family‐centred care that they address. We conducted a scoping review that aimed to identify and characterize recent family‐centred interventions designed to improve experiences with care for children with chronic conditions. Methods We searched Medline, Embase, PsycInfo and Cochrane databases, and grey literature sources for relevant articles or documents published between 1 January 2019 and 11 August 2020 (databases) or 7–20 October 2020 (grey literature). Primary studies with ≥10 participants, clinical practice guidelines and theoretical articles describing family‐centred interventions that aimed to improve experiences with care for children with chronic conditions were eligible. Following citation and full‐text screening by two reviewers working independently, we charted data covering study characteristics and interventions from eligible reports and synthesized interventions by domains of family‐centred care. Results Our search identified 2882 citations, from which 63 articles describing 61 unique interventions met the eligibility criteria and were included in this review. The most common study designs were quasiexperimental studies (n = 18), randomized controlled trials (n = 11) and qualitative and mixed‐methods studies (n = 9 each). The most frequently addressed domains of family‐centred care were communication and information provision (n = 45), family involvement in care (n = 37) and access to care (n = 30). Conclusion This review, which identified 61 unique interventions aimed at improving family‐centred care for children with chronic conditions across a range of settings, is a concrete resource for researchers, health care providers and administrators interested in improving care for this high‐needs population. Patient or Public Contribution This study was co‐developed with three patient partner co‐investigators, all of whom are individuals with lived experiences of rare chronic diseases as parents and/or patients and have prior experience in patient engagement in research (I. J., N. P., M. S.). These patient partner co‐investigators contributed to this study at all stages, from conceptualization to dissemination.

Abstract 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.

ObjectiveObesity is a major risk factor for low-grade endometrial cancer. The surgical management of patients with obesity is challenging, and they may face unique barriers to accessing care. We completed a qualitative study to understand the experiences of low-grade endometrial cancer patients with morbid obesity, from symptom onset to diagnosis to surgery.DesignSemi-structured interviews were performed with endometrial cancer patients with morbid obesity (body mass index (BMI) >40 kg/m2) referred for primary surgery. Transcribed interviews were coded line-by-line and analysed using an interpretive descriptive approach that drew on labelling theory to understand patients’ experiences. Thematic sufficiency was confirmed after 15 interviews.SettingTwo tertiary care centres in Toronto, Ontario, Canada.ParticipantsFifteen endometrial cancer patients with a median age of 61 years (range: 50–74) and a median BMI of 50 kg/m2 (range: 44–70) were interviewed.ResultsThematic analysis identified that (1) both patients and providers lack knowledge on endometrial cancer and its presenting symptoms and risk factors; (2) patients with morbid obesity are subject to stigma and poor communication in the healthcare system and (3, 4) although clinical, administrative, financial, geographic and facility-related barriers exist, quality care for patients with morbid obesity is an achievable goal.ConclusionsImproved education on the prevention and identification of endometrial cancer is needed for both patients and providers. Delivery of cancer care to patients with morbid obesity may be improved through provider awareness of the impact of weight stigma and establishing streamlined care pathways at centres equipped to manage surgical complexity.

This study systematically reviewed the literature on the impact of digital genetics tools on patient care and system efficiencies. MEDLINE and Embase were searched for articles published between January 2010 and March 2021. Studies evaluating the use of patient-facing digital tools in the context of genetic service delivery were included. Two reviewers screened and extracted patient-reported and system-focused outcomes from each study. Data were synthesised using a descriptive approach. Of 3226 unique studies identified, 87 were included. A total of 70 unique digital tools were identified. As a result of using digital tools, 84% of studies reported a positive outcome in at least one of the following patient outcomes: knowledge, psychosocial well-being, behavioural/management changes, family communication, decision-making or level of engagement. Digital tools improved workflow and efficiency for providers and reduced the amount of time they needed to spend with patients. However, we identified a misalignment between study purpose and patient-reported outcomes measured and a lack of tools that encompass the entire genetic counselling and testing trajectory. Given increased demand for genetic services and the shift towards virtual care, this review provides evidence that digital tools can be used to efficiently deliver patient-centred care. Future research should prioritise development, evaluation and implementation of digital tools that can support the entire patient trajectory across a range of clinical settings. PROSPERO registration numberCRD42020202862., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2023. No commercial re-use. See rights and permissions. Published by BMJ.)