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Parental experiences of congenital heart disease transition care highlight the need for family-centered approaches

Por: Fox · K. R. · Garg · V.

Commentary on: Lykkeberg B, Noergaard MW, Bjerrum M. Experiences and expectations of parents when young people with congenital heart disease transfer from pediatric to adult care: A qualitative systematic review. J Child Health Care. doi:10.1177/13674935241231024

Implications for practice and research

  • To inform family-centred transition programmes, more high-quality qualitative research describing parental experiences should be conducted, particularly in non-European and low- and middle-income countries.

  • Congenital heart disease transition programmes should consider adopting a family-centred approach that incorporates informational and psychosocial support resources for parents.

  • Context

    A growing number of individuals born with congenital heart disease (CHD) are surviving well into adulthood, and a successful transition from paediatric to adult healthcare is essential for their long-term health. However, discontinuity in care is prevalent.1 Parents play an important role in the transition process and may impact transition-related outcomes,2 but their experiences and...

    Prioritizing food systems interventions to reduce adolescents nutrition insecurity and malnutrition in low-income settings: protocol for the Dishi Fiti Ishi Fiti (Eat Well Live Well) mixed-methods study

    Por: Lee · G. O. · McCormick · B. J. · Staromiejska · W. · Mutuku · V. · Fox · E. L. · Kimenju · S. · Mawa · P. A. · Asiki · G. · Downs · S.
    Introduction

    Adolescents in informal urban communities, defined as settlements that fall outside of formal governmental planning and regulatory frameworks, are at increasing risk of poor-quality diets and malnutrition in all its forms. The food environment is the interface of adolescent food choice and the broader food system, and food environment interventions have the potential to improve adolescent diets and nutritional outcomes.

    Methods and analysis

    We will conduct a mixed-methods study, integrating methods from participatory systems science and nutritional epidemiology to characterise linkages among adolescents’ neighbourhood and home food environments, and their food choices, diets and nutritional outcomes. We will recruit adolescents, caregivers, school staff and food system actors from five communities along a gradient of urban informality in Nairobi, Kenya, to participate in cognitive mapping, group-based modelling and a cohort study over one academic year to evaluate dietary choices and nutritional outcomes.

    Ethics and dissemination

    The study has been approved by the Research Ethics Committee of Rutgers University (Pro2024001981) and Amref Health Africa (P1831-2025). Adult participants will provide written informed consent, and adolescents will provide written informed assent to participate in the study. Findings will be disseminated through peer-reviewed journals, conference presentations and to participants through planned participatory interaction throughout the study.

    Models, frameworks, and strategies used to implement digital interventions targeted to youth mental health: a scoping review protocol

    Por: Moss · S. J. · Zuniga Chacon · C. · Hekmati · F. B. · Siddiqui · S. A. · Stelfox · M. · Ahmed · S. B. · Birnie · K. · Halperin · D. · Halperin · S. A. · Tutelman · P. R. · Stelfox · H. T. · Fiest · K. M. · Parsons Leigh · J.
    Introduction

    The use of digitally enabled technology is considered a promising platform to prevent morbidity and enhance youth mental health as youth are growing up in the digital world and accessing the Internet at increasingly younger age. This scoping review will identify, describe and categorise the models, frameworks and strategies that have been used to study the implementation of digital mental health interventions targeted at youth aged 15–34 years.

    Methods and analysis

    We will conduct a scoping review following the Arksey-O’Malley five-stage scoping review method and the Scoping Review Methods Manual by the Joanna Briggs Institute. Implementation methods will be operationalised according to pre-established aims: (1) process models that describe or guide the implementation process; (2) evaluation frameworks evaluating or measuring the success of implementation; and (3) implementation strategies used in isolation or combination in implementation research and practice. Primary research studies in all languages will be identified in CINAHL, Cochrane Central Register of Controlled Trials, Embase, ERIC, Education Research Complete, MEDLINE and APA PsycINFO on 6 January 2025. Two reviewers will calibrate screening criteria and the data charting form and will independently screen records and abstract data. We will use the Evidence Standards Framework for Digital Health Technologies by the National Institute for Health and Care Excellence to classify digital interventions based on functions, and a pre-established working taxonomy to synthesise conceptually distinct implementation outcomes. Convergent integrated data synthesis will be performed.

    Ethics and dissemination

    Ethical approval is not applicable as this scoping review will be conducted only on data presented in the published literature. Findings will be published and directly infused into our multidisciplinary team of academic researchers, youth partners, health professionals and knowledge users (healthcare and non-governmental organisation decision makers) to co-design and pilot test a digital psychoeducational health intervention to engage, educate and empower youth to be informed stewards of their mental health.

    Use of ambulatory pathways in emergency general surgery: a systematic review

    Por: Fox · B. · Walters · M. · Pathak · S. · Peckham-Cooper · A. · Blencowe · N. S.
    Objectives

    Ambulatory care is defined as the provision of medical treatment by healthcare professionals outside an inpatient hospital setting. While well-established in acute medicine, uptake of ambulatory pathways in emergency general surgery (EGS) is variable and optimal design and delivery is unclear in this context. This systematic review sought to (1) appraise current EGS ambulatory pathway literature and (2) ascertain the constituent components across the identified pathways, guiding the development of comprehensive templates for future EGS ambulatory pathways.

    Design

    Systematic review.

    Data sources

    PubMed, Embase, Medline and Cochrane Library, from 5 December 2018 to 5 December 2023 inclusive.

    Eligibility criteria

    All primary observational studies (ie, case–control, cohort studies and randomised controlled trials (RCTs)) were included. Case series and conference abstracts were excluded due to the high likelihood of incomplete data. Studies reporting paediatric or non-surgical populations, or ambulatory surgical care within a primary care setting, were also excluded.

    Data extraction and synthesis

    General study characteristics (year and journal of publication, country of origin, study design, disease area, number of patients receiving ambulatory management and use of control groups) were recorded. To identify the constituent components of EGS ambulatory pathways, an initial subset of five papers was reviewed, from which four categories were identified (decision-making processes, scoring/classification systems, investigations and care escalation and discharge criteria). An additional fifth component (‘follow-up’) was identified during data extraction. Reporting of the constituent components of ambulatory pathways was also extracted, as well as outcomes including readmission, complications and mortality.

    Results

    Of 43 included studies, there were 8 RCTs, 31 cohort studies and 4 studies using other methods. Reporting of all aspects of EGS ambulatory pathways was heterogeneous. 24 (56%) papers reported the specialty and grade of clinician acting as senior decision-maker. 17 different scoring/classification systems were used. 32 (74%) papers described using investigations to select ambulatory patients, including blood tests (n=12) and imaging (n=16). Eight studies (19%) specified both care escalation and discharge criteria. Information about follow-up was described in 29 papers, with location (n=29), time points (n=26), personnel (n=16) and the form of the follow-up (n=23) all reported variably. Readmission rates were recorded in 34 studies and ranged from 0% to 13%. Most studies (n=32) reported 30-day readmission, although 48 hours (n=1) and 90 days (n=1) were also used. Mortality was recorded in 24 papers, with 21 reporting a mortality rate of 0 and the remaining 3 reporting rates of

    Conclusions

    Key components of published EGS ambulatory pathways include decision-making processes, scoring/classification systems, investigations, care escalation and discharge criteria, and follow-up. However, this information is currently inconsistently reported. Future work to identify and agree on guidelines for the ‘core’ components of ambulatory EGS pathways is needed, to facilitate cross-study comparisons, and crucially, provide a ‘gold-standard’ framework for developing future ambulatory pathways.

    Evaluating care pathways in Alzheimers disease: a qualitative interview study with GPs in England

    Por: Carter · M. · Butterworth · J. E. · Fox · C. · Allan · L.
    Aim

    To understand general practitioners’ (GPs’) experience of existing care pathways for people with moderate-severe Alzheimer’s Disease (AD) and explore their attitudes towards potential modifications to these pathways.

    Design

    Secondary thematic analysis of qualitative interviews, originally conducted with GPs to explore prescribing of memantine in general practice. The theoretical domains framework was used to structure the data.

    Setting

    The study participants were recruited via an online survey completed by GPs across England.

    Participants

    Semi-structured, qualitative interviews were conducted with thirteen male and ten female GPs from a range of general practices in England.

    Primary outcome

    Insights into GPs’ views and experiences regarding existing and possible care pathways for individuals with moderate to severe AD.

    Results

    Gaps in GPs’ current levels of knowledge and skill in respect of caring for patients with moderate-to-severe AD affect their confidence and ability to identify opportunities for additional treatments. While GPs emphasise their role as providers of holistic care, features of the current healthcare context, including a lack of additional funding, inhibit their willingness to assume additional responsibilities as part of a revised pathway.

    Conclusion

    A considerable knowledge, skills and confidence gap must be addressed to support the implementation of new care pathways that include revised responsibilities for GPs. GPs need appropriate support and resources to manage their patients’ changing needs and to provide the best possible pharmacological management as the disease develops.

    Reporting of environmental outcomes in randomised clinical trials: a protocol for a scoping review

    Por: Petersen · J. J. · Hemberg · L. · Thabane · L. · Hopewell · S. · Chan · A.-W. · Hrobjartsson · A. · Mathiesen · O. · Kandasamy · S. · Siegfried · N. · Williamson · P. R. · Fox · L. · Kamp · C. B. · Hoffmann · J.-M. · Brorson · S. · Jakobsen · J. C. · Bentzer · P.
    Introduction

    To increase the sustainability of healthcare, clinical trials must assess the environmental impact of interventions alongside clinical outcomes. This should be guided by Standard Protocol Items: Recommendations for Interventional Trials (SPIRIT) and Consolidated Standards of Reporting Trials (CONSORT) extensions, which will be developed by The Implementing Climate and Environmental Outcomes in Trials Group. The objective of the scoping review is to describe the existing methods for reporting and measuring environmental outcomes in randomised trials. The results will be used to inform the future development of the SPIRIT and CONSORT extensions on environmental outcomes (SPIRIT-ICE and CONSORT-ICE).

    Methods and analysis

    This protocol outlines the methodology for a scoping review, which will be conducted in two distinct sections: (1) identifying any existing guidelines, reviews or methodological studies describing environmental impacts of interventions and (2) identifying how environmental outcomes are reported in randomised trial protocols and trial results. A search specialist will search major medical databases, reference lists of trial publications and clinical trial registries to identify relevant publications. Data from the included studies will be extracted independently by two review authors. Based on the results, a preliminary list of items for the SPIRIT and CONSORT extensions will be developed.

    Ethics and dissemination

    This study does not include any human participants, and ethics approval is not required according to the Declaration of Helsinki. The findings from the scoping review will be published in international peer-reviewed journals, and the findings will be used to inform the design of a Delphi survey of relevant stakeholders.

    Open science

    Registered with Open Science 28 of February 2025.

    Protocol for development of SPIRIT and CONSORT extensions for reporting climate and environmental outcomes in randomised trials (SPIRIT-ICE and CONSORT-ICE)

    Por: Petersen · J. J. · Hemberg · L. · Thabane · L. · Hopewell · S. · Chan · A.-W. · Hrobjartsson · A. · Mathiesen · O. · Kandasamy · S. · Siegfried · N. · Williamson · P. R. · Fox · L. · Kamp · C. B. · Hoffmann · J.-M. · Brorson · S. · Boutron · I. · McGain · F. · McAlister · S. · Mutengu · L
    Introduction

    The WHO has declared climate change the defining public health challenge of the 21st century. Incorporating climate and environmental outcomes in randomised trials is essential for enhancing healthcare treatments’ sustainability and safeguarding global health. To implement such outcomes, it is necessary to establish a framework for unbiased and transparent planning and reporting. We aim to develop extensions to the Standard Protocol Items: Recommendations for Interventional Trials (SPIRIT 2025) and Consolidated Standards of Reporting Trials (CONSORT 2025) statements by introducing guidelines for reporting climate and environmental outcomes.

    Methods and analysis

    This is a protocol for SPIRIT and CONSORT extensions on reporting climate and environmental outcomes in randomised trials termed SPIRIT-Implementing Climate and Environmental (ICE) and CONSORT-ICE. The development of the extensions will consist of five phases: phase 1—project launch, phase 2—review of the literature, phase 3—Delphi survey, phase 4—consensus meeting and phase 5—dissemination and implementation. The phases are expected to overlap. The SPIRIT-ICE and CONSORT-ICE extensions will be developed in parallel. The extensions will guide researchers on how and what to report when assessing climate and environmental outcomes.

    Ethics and dissemination

    The protocol was submitted to the Danish Research Ethics Committees, Denmark in June 2025. Ethics approval is expected in September 2025. The SPIRIT and CONSORT extensions will be published in international peer-reviewed journals.

    Identifying bio-behavioural signatures of persistent opioid use risk in trauma injury patients: a protocol for a prospective cohort study

    Por: Schmitz · J. M. · Yoon · J. H. · Kluwe-Schiavon · B. · Harvin · J. A. · Gunaratne · P. H. · Mouton · D. · Motley · K. · Fox · E. E. · Vincent · J. · Tarbet · M. · Walss-Bass · C.
    Introduction

    Exposure to prescription opioids following traumatic injury can increase the risk of developing tolerance, persistent opioid use and opioid use disorder. The mechanisms underlying opioid tolerance or dependence are not well understood, and no biomarkers predict risk. Opioid exposure causes epigenetic modifications, including alterations in microRNA (miRNA) expression. Several miRNAs, which regulate synaptic plasticity, are hypothesised to underlie substance use disorders and influence µ-opioid receptor levels, modulating opioid tolerance. This project aims to develop a bio-behavioural signature to predict persistent opioid use and chronic pain up to 6 months post-discharge.

    Methods and analysis

    The study will use a prospective cohort design, enrolling 180 adult patients at a Level I Trauma Center who are prescribed opioids at discharge. Prospective data will be collected in the hospital and at 7 days and 1, 3 and 6 months post-discharge. Biological data (genotyping and miRNA levels) and clinical measures of opioid use, pain, pain sensitivity (EEG) and psychosocial functioning will be collected at each time point. Bayesian regression methods will be used to identify baseline clinical, genetic, epigenetic and psychosocial predictors of opioid use and pain outcomes at 6 months post-discharge. Growth mixture modelling will identify distinct subgroups with varying trajectories, followed by Bayesian hierarchical modelling to predict trajectory classification based on predictor variables.

    Ethics and dissemination plan

    Ethics approval for this study was obtained from the University of Texas Health Science Center at Houston Committee for the Protection of Human Subjects (HSC-MS-24–0314). Findings will be disseminated in peer-reviewed scientific journals and at national and international conferences.

    Identifying instruments for measuring agitation and other non-cognitive symptoms in people with advanced dementia in residential settings: a scoping review protocol

    Por: Faherty · M. · O' Mahony · L. · Cornally · N. · Brady · N. · Dalton O Connor · C. · Fox · S. · Hartigan · I. · van den Broek · B. · van der Steen · J. T. · Timmons · S.
    Introduction

    Various instruments exist for assessing agitation and broader non-cognitive symptoms in dementia (NCSD). However, the feasibility and practicality of using these instruments in residential settings with people with advanced dementia have not been evaluated. The aim of our review is to identify the available evidence regarding tools for measuring (1) Agitation and (2) NCSD in people with advanced dementia in residential settings, in terms of use (feasibility and psychometric properties) in this population.

    Methods and analysis

    Literature searches will be carried out in Medline, Embase, CINAHL, PsycInfo, Scopus, Cochrane Database of Systematic Reviews and Cochrane Central Register of Controlled Trials. Grey literature databases and relevant websites will also be explored for guidance documents, task reports, etc. A three-stage screening process will be adopted and will include pilot testing of source selectors. Two reviewers will independently perform title and abstract screening, then full text screening, against the defined eligibility criteria. This scoping review protocol was registered with Open Science Framework (https://osf.io/p7g86).

    Ethics and dissemination

    Due to the nature of the scoping review, ethical approval is not required. Results will be disseminated in a peer-reviewed journal and at international conferences.

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