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Introduction: The assessment of using patient‐reported outcomes (PROs) within comprehensive care follow‐up programmes, specifically focused on health screening, remains largely unexplored. PROs were implemented in our late effects and comprehensive care programme after paediatric hematopoietic stem cell transplantation (HSCT) for nonmalignant diseases. The programme focuses solely on screening of physical and mental health and on discussing PROs during the consultation. Methods: The primary method of this study was semistructured interviews to explore the perspective of both patients and healthcare providers' (HCP) on the use of PROs, which were thematically analyzed. Additionally, an explorative quantitative approach with patient‐reported experience measures (PREMS) was used, with a pretest–posttest design, to assess whether the use of PROs was accompanied by more patient‐centred care. Results: From the patient‐interviews (N = 15) four themes were extracted: use of PROs (1) help to discuss topics; (2) make the patients feel understood; (3) create a moment of self‐reflection; and (4) make consultations more efficient. Pre‐ and postimplementation analysis of PREMs (N = 40) did not show significant differences in terms of patient‐centeredness. Conclusion: Our results demonstrate the added value of integrating PROs for health screening purposes within the long‐term follow‐up programme after paediatric HSCT, as perceived by both patient and HCP. With the active use of PROs, patients are stimulated to consciously assess their health status. Patient Contribution: This study included patients as participants. Caregivers were approached if patients were below a certain age. Additionally, preliminary results were shared with all patients (including nonparticipants) during a patient conference day. [ABSTRACT FROM AUTHOR]

Introduction: Caring for children and youth with special health care needs (CYSHCN) is a significant undertaking for families. While respite care is intended to address this burden, demand continues to exceed supply. Exploring the perspectives of respite service providers (SPs) and stakeholders (SKs) provides unique insight into families' needs and respite care systems. Methods: We conducted semistructured interviews with 41 respite care SPs and SKs across four Canadian provinces to ascertain perspectives on current and ideal respite care for families of CYSHCN. The analysis included delineating units of meaning from the data, clustering units of meaning to form thematic statements and extracting themes. The second‐level analysis involved applying themes and subthemes to cross‐functional process maps. Findings: Participants noted the critical, but sometimes absent role of Community Service Workers, who have the ability to support families accessing and navigating respite care systems. SPs and SKs identified current respite systems as operating in crisis mode. New findings suggest an ideal respite care system would incorporate advocacy for families, empower families and value CYSHCN, their families and respite workers. Conclusion: The evidence of unmet respite care needs of families of CYSHCN across Canada has long been available. Our findings identifying respite system challenges and solutions can be used by funders and policymakers for planning and enhancing resources, and by healthcare professionals, respite care providers and SKs to understand barriers and take action to improve respite outcomes to meet the respite needs of all families and CYSHCN. Patient or Public Contribution: The research team is composed of patients, researchers, clinicians and decision‐makers along with our Family Advisory Committee (FAC) composed of members of families of CYSHNC. The FAC was formed and met regularly with research team members, knowledge users and collaborators throughout the study to provide input on design, review themes and ensure findings are translated and disseminated in a meaningful way. [ABSTRACT FROM AUTHOR]

Background: The aim of this project was to identify the top 10 priorities for childhood chronic conditions and disability (CCD) research from the perspectives of children and young people with lived experience, their parents and caregivers and the professionals who work with them. Methods: We conducted a three‐stage study based on the James Lind Alliance priority‐setting partnership methods. It comprised two online surveys (n = 200; n = 201) and a consensus workshop (n = 21) with these three stakeholder groups in Australia. Results: In the first stage, 456 responses were submitted, which were coded and collapsed into 40 overarching themes. In the second stage, 20 themes were shortlisted, which were further refined in stage 3, before the top 10 priorities being selected. Of these, the top three priorities were improving awareness and inclusion in all aspects of their life (school, work and social relationships), improving access to treatments and support and improving the process of diagnosis. Conclusions: The top 10 priorities identified reflect the need to focus on the individual, health systems and social aspects of the CCD experience when conducting research in this area. Patient or Public Contribution: This study was guided by three Advisory Groups, comprising (1) young people living with CCD; (2) parents and caregivers of a child or young person with CCD and (3) professionals working with children and young people with CCD. These groups met several times across the course of the project and provided input into study aims, materials, methods and data interpretation and reporting. Additionally, the lead author and seven members of the author group have lived and experienced CCD. [ABSTRACT FROM AUTHOR]

The COVID‐19 pandemic presented numerous challenges to acute malnutrition screening and treatment. To enable continued case identification and service delivery while minimising transmission risks, many organisations and governments implemented adaptations to community‐based management of acute malnutrition (CMAM) programmes for children under 5. These included: Family mid‐upper arm circumference (MUAC); modified admission and discharge criteria; modified dosage of therapeutic foods; and reduced frequency of follow‐up visits. This paper presents qualitative findings from a larger mixed methods study to document practitioners' operational experiences and lessons learned from these adaptations. Findings reflect insights from 37 interviews representing 15 organisations in 17 countries, conducted between July 2020 and January 2021. Overall, interviewees indicated that adaptations were mostly well‐accepted by staff, caregivers and communities. Family MUAC filled screening gaps linked to COVID‐19 disruptions; however, challenges included long‐term accuracy of caregiver measurements; implementing an intervention that could increase demand for inconsistent services; and limited guidance to monitor programme quality and impact. Modified admission and discharge criteria and modified dosage streamlined logistics and implementation with positive impacts on staff workload and caregiver understanding of the programme. Reduced frequency of visits enabled social distancing by minimising crowding at facilities and lessened caregivers' need to travel. Concerns remained about how adaptations impacted children's identification for and progress through treatment and programme outcomes. Most respondents anticipated reverting to standard protocols once transmission risks were mitigated. Further evidence, including multi‐year programmatic data analysis and rigorous research, is needed in diverse contexts to understand adaptations' impacts, including how to ensure equity and mitigate unintended consequences. Key messages: COVID‐19 CMAM programme adaptations enabled service continuity despite pandemic‐related challenges. Further evidence is needed on long‐term impacts.Family MUAC was well‐accepted and addressed screening gaps from COVID‐19 disruptions. Challenges included sustaining caregiver measurement accuracy; handling inaccurate self‐referrals to encourage health‐seeking behaviours; and limited programme design and monitoring guidance and tools.Modified admission criteria and therapeutic food dosage reduced contact between staff and children and streamlined logistics and implementation. Concerns remained about effects on programme admissions and outcomes.Reduced frequency of follow‐up visits successfully reduced facility crowding and need for caregiver travel. However, infrequent monitoring of childrenmay miss deterioration. [ABSTRACT FROM AUTHOR]

Introduction: Although several outcomes are commonly measured to assess the effect of surgery for young people with cerebral palsy (CP), these are selected mainly by health professionals and researchers. Including the perspectives of a broader range of stakeholders is an essential step towards determining important outcomes for assessment. This qualitative study involves the development of a core outcome set (COS) for lower limb orthopaedic surgery for ambulant children with CP. Objective: This study aimed to identify outcomes that matter to children and young people with CP, their parents and healthcare professionals following lower limb orthopaedic surgery. Methods: Semi‐structured interviews were conducted with 10 healthcare professionals, 10 children and young people with CP and 8 parents. Interview data were analysed by content analysis supported by the International Classification of Functioning, Disability and Health (ICF‐CY) supplemented by thematic analysis. Findings: Thirty‐one outcomes were identified in total, which were linked to eleven second‐level ICF‐CY categories. There were differences between stakeholder groups in preferences and expectations from surgical outcomes. Healthcare professionals and children with their parents identified 31 and 25 outcomes, respectively. Health outcomes valued by participants were lower limb alignment and symmetry, flexibility and muscle strength, mental health, fatigue, pain, function in life, mobility, participation, being independent, quality of life and adverse events. Compared to previous published trials, 10 new outcomes were revealed by this study. Conclusion: The researchers identified outcomes that are important to all stakeholders following lower limb orthopaedic surgery for ambulant CP. Including these outcomes in future studies would promote patient‐centred care for children and young adults with CP. Findings will be used to inform an international Delphi survey and develop a COS in this field. Patient and Public Contribution: This study was informed by an advisory group including a young adult with CP and a parent of a child with CP. This group engaged in the design of the study and the information material to support the interview (information sheet and interview topic guide). [ABSTRACT FROM AUTHOR]