Prevalence threshold and positive predictive value of noninvasive prenatal testing.

OBJECTIVE: Noninvasive prenatal testing (NIPT) has increased the number of conditions that can be screened. However, the prevalence of conditions assessed by NIPT has remained stable. The "prevalence threshold," a novel epidemiological concept, uses a test's sensitivity and specificity to determine the prevalence below which a test's positive predictive value declines most sharply relative to disease prevalence. In this article, we calculated the prevalence threshold for common conditions assessed through NIPT and compared the value with the actual prevalence of each condition to best ascertain the reliability of NIPT results. METHODS: Six databases and PubMed were searched from January 2010 to March 2023 for sensitivity and specificity parameters of common conditions tested through NIPT. Using an equation previously derived by the authors of the current paper, the prevalence threshold for each condition was calculated. The theoretical number of test iterations required to reach the prevalence threshold was also reported. RESULTS: None of the conditions tested through the NIPT had a prevalence rate that met or exceeded the calculated prevalence threshold. Trisomy 21 had the greatest concordance between the prevalence rate and the prevalence threshold. In contrast, Angelman, Cri-du-chat, and Prader-Willi syndromes had the most significant discordance. Apart from trisomy 21 and XXY, all remaining conditions required more than one test iteration to reach their respective prevalence threshold. CONCLUSION: We conclude that at the current prevalence levels, the positive predictive value of NIPT remains low, with the prevalence of disease levels significantly lower than the prevalence threshold for each condition tested.

A multilingual sexual and reproductive health animation: a novel educational tool for newcomer patients.

Newcomer populations face many barriers accessing healthcare, including language barriers. Language-concordant care has been shown to enhance equity and optimize health outcomes for underserved populations. This paper describes a sexual and reproductive health (SRH) animation for newcomer populations. The animation was created collaboratively by the Department of Obstetrics and Gynaecology Global Health Unit, the Halifax Newcomer Health Clinic, and student volunteers. Integrating this animation into other healthcare settings may help improve inclusion, trust, and patient-centred care for newcomer patients. Institutions may also consider creating further SRH animations based on the needs of the patients they serve.

Les nouveaux arrivants sont confrontés à de nombreux obstacles dans l'accès aux soins de santé, notamment des barrières linguistiques. Il a été démontré qu'une concordance linguistique au cours des soins améliorent l'équité et les résultats en matière de santé pour les populations mal desservies. Cet article décrit une animation sur la santé sexuelle et reproductive pour les nouveau arrivants. Cette animation a été conçue en collaboration par l'unité de santé mondiale du département d'obstétrique et de gynécologie, la clinique de santé pour les nouveaux arrivants de Halifax et des étudiants bénévoles. L'intégration de cette animation dans d'autres contextes de soins peut contribuer à améliorer l'inclusion, la confiance et les soins centrés sur le patient pour les nouveaux arrivants. Les établissements peuvent également envisager de concevoir d'autres animations sur la santé sexuelle et reproductive en fonction des besoins de la population qu'ils desservent.

"I'd like more options!": Interviews to explore young people and family decision-making needs for pain management in juvenile idiopathic arthritis.

BACKGROUND: Juvenile idiopathic arthritis (JIA) is a common pediatric rheumatic condition and is associated with symptoms such as joint pain that can negatively impact health-related quality of life. To effectively manage pain in JIA, young people, their families, and health care providers (HCPs) should be supported to discuss pain management options and make a shared decision. However, pain is often under-recognized, and pain management discussions are not optimal. No studies have explored decision-making needs for pain management in JIA using a shared decision making (SDM) model. We sought to explore families' decision-making needs with respect to pain management among young people with JIA, parents/caregivers, and HCPs. METHODS: We conducted semi-structured virtual or face-to-face individual interviews with young people with JIA 8-18 years of age, parents/caregivers and HCPs using a qualitative descriptive study design. We recruited participants online across Canada and the United States, from a hospital and from a quality improvement network. We used interview guides based on the Ottawa Decision Support Framework to assess decision-making needs. We audiotaped, transcribed verbatim and analyzed interviews using thematic analysis. RESULTS: A total of 12 young people (n = 6 children and n = 6 adolescents), 13 parents/caregivers and 11 HCPs participated in interviews. Pediatric HCPs were comprised of rheumatologists (n = 4), physical therapists (n = 3), rheumatology nurses (n = 2) and occupational therapists (n = 2). The following themes were identified: (1) need to assess pain in an accurate manner; (2) need to address pain in pediatric rheumatology consultations; (3) need for information on pain management options, especially nonpharmacological approaches; (4) importance of effectiveness, safety and ease of use of treatments; (5) need to discuss young people/families' values and preferences for pain management options; and the (6) need for decision support. Themes were similar for young people, parents/caregivers and HCPs, although their respective importance varied. CONCLUSIONS: Findings suggest a need for evidence-based information and communication about pain management options, which would be addressed by decision support interventions and HCP training in pain and SDM. Work is underway to develop such interventions and implement them into practice to improve pain management in JIA and in turn lead to better health outcomes.

A scoping review of the Choice and Partnership Approach in child and adolescent mental health services.

Child and adolescent mental health (CAMH) problems are prevalent and inefficient mental health (MH) care systems can contribute to poor outcomes. The Choice and Partnership Approach (CAPA) is a MH care delivery model aiming to provide efficient, high-quality care. Although widely used, no CAPA research review exists. We conducted a scoping review to fill this gap. Medline, Embase, and PsycINFO databases were searched from inception to June 2021. Grey Matters and Google were used to search the grey literature. We identified 5322 records. Removal of duplicates left 4720 documents, which were successively screened and data extracted by pairs of co-authors. The final dataset comprised six published and three non-published studies, conducted primarily at CAMH sites in England, Scotland, Australia, or Canada. Each study had multiple research objectives, which we summarized into seven categories. Positive outcomes were reported for most objectives, but attributing causality to CAPA was hampered by research methodology. Observational designs were used in all studies and approaches to analyzing data varied considerably. Research gaps included the lack of healthcare economics studies of CAPA and no assessment of facilitators and barriers. Current research on CAPA provides intriguing findings meriting further investigation. We suggest strategies to improve future studies.

Patient Engagement Partnerships in Clinical Trials: Development of Patient Partner and Investigator Decision Aids.

BACKGROUND: A 2017 systematic review suggested patient engagement in clinical trials has been limited, with little active engagement in trial design or data analysis, interpretation or dissemination. Additionally, there remains limited sex/gender reporting in clinical trial research. OBJECTIVES: The overall goal of this project was to disseminate sex/gender knowledge and build capacity for patient engagement in clinical trials. Specific objectives were to (1) create capacity and identify opportunities for patient engagement in clinical trials and sponsor- or investigator-led activities (e.g. clinical trial design and conduct); and (2) enhance new/early investigator sex/gender knowledge and skills related to patient-oriented research (POR). METHODS: We used the Canadian Institutes of Health Research Strategy for Patient-Oriented Research (SPOR) Capacity Development Framework and the SPOR Patient Engagement Framework to guide three phases of this project: (1) conduct a scoping review using methods described by the Evidence for Policy and Practice Information (EPPI) and the Coordinating Centre at the Institute of Education (Phase 1); (2) host a 1-day POR consultation workshop (Phase 2); and (3) deliver a new/early investigator POR training day (Phase 3). Six electronic databases (CINAHL, MEDLINE, EMBASE, PsychInfo, the Cochrane Library, and AMED) were searched from 1996 using keywords and Medical Subject Heading (MeSH) terms in accordance with the International Association for Public Participation (IAP2) and the search criteria in the bibliographic databases. Standard approaches were used to search the grey literature. RESULTS: A total of 79 studies and over 150 websites were subject to data abstraction by team members, capturing information on sex/gender and SPOR's patient engagement guiding principles of inclusiveness, support, mutual respect, and co-building. Results were presented to 32 key stakeholders at the consultation workshop and input was sought on next steps using nominal group techniques. Based on the plethora of existing POR resources, relevant POR information from the scoping review was collated into two decision aids (patient and investigator) to determine readiness to engage with/as a patient partner in a clinical trial. The decision aids were presented at a POR training day with 88 new/early investigators, clinicians, patient partners and decision makers. The decision aids showed 'good' usability, assessed using the System Usability Scale (SUS). Attendees thought the decision aids were engaging, they increased their understanding of sex/gender, patient engagement and POR, and they would recommend them to others. POR principles and practices were integrated across all phases of the project. Patient partners (1) identified research priorities/search terms; (2) collected/analyzed data; (3) designed the patient partner decision aid; and (4) disseminated the results through presentation. CONCLUSION: Our digital patient partner and investigator decision aids are the first to provide information technology to deliver sex/gender, POR knowledge, and decision support beyond the traditional decision aids used for health screening and/or treatment decisions. The decision aids have the potential to make a significant contribution to Canada's Strategy for POR and support the collaborative efforts of patients and investigators to build a sustainable, accessible and equitable health care system.

The goal of this project was to improve sex/gender knowledge and help patients and investigators work together as partners in clinical trials. There were three phases to this project: Phase 1, search the literature to see what others had done; Phase 2, share the results of Phase 1 with key stakeholders to determine gaps, and develop tools to fill the gaps; and Phase 3, share the tools developed in Phase 2 with others to get feedback. We worked with Clinical Trials Ontario and other key stakeholders to make two decision aids­one for patients and one for investigators. The decision aids share sex/gender knowledge and information about patient-oriented research. Each decision aid has five parts: (1) Introduction (get the facts); (2) My Priorities (patient partner and investigator priorities); (3) Learn More (information on sex/gender and other resources to help patients and investigators work together); (4) My Readiness (comparing priorities with benefits and risks); and (5) My Decision (decision and next steps). Patients, investigators, and other key stakeholders really liked the decision aids and found them easy to move through, they had useful information, and they looked good. Comments included "I enjoyed that the decision aids were separated for patients and investigators"; "I liked it, it was user-friendly and easy to navigate"; and "there could be more interaction and aimed more for mobile devices". These decision aids are the first to provide knowledge and support beyond the standard decision aids used for health decisions. Next steps include getting more feedback and using the decision aids in a laboratory and then in a real-life setting and see if people still like them.

Assessing the reporting quality of physical activity programs in randomized controlled trials for the management of juvenile idiopathic arthritis using three standardized assessment tools.

BACKGROUND: The reporting quality of physical activity (PA) programs in randomized controlled trials (RCTs) for the management of juvenile idiopathic arthritis (JIA) remains unknown. This study aimed to assess and compare the reporting quality of PA programs in RCTs for the management of JIA using three difference standardized assessment tools, and to describe the elements that were similar and different between these tools. METHODS: A systematic search was conducted for moderate-to high-quality RCTs of PA programs in JIA, published up until January 2019. Two reviewers independently included 10 RCTs and scored the reporting quality of PA programs using the following tools: Consensus on Exercise Reporting Template (CERT) checklist, Consensus on Therapeutic Exercise Training (CONTENT) scale, and Template for Intervention Description and Replication (TIDieR) checklist. RESULTS: Results showed that reporting of PA programs in 10 moderate- to high-quality RCTs for JIA management remains incomplete. The average reporting quality (± standard deviation) for all RCTs combined was moderate for the three standardized assessment tools with 70.8 (±14.3)% for the TIDieR checklist, 53.2 (±20.2)% for the CERT checklist, and 70.0 (±18.9)% for the CONTENT scale. Despite some overlap, the three standardized assessment tools (TIDieR, CERT, CONTENT) included different elements resulting in different scores. All tools assess elements linked to PA programs (provider, location, timing, personalization and adherence), but the CERT checklist includes other essential elements (e.g., additional resources, motivational strategies, adverse events). CONCLUSIONS: The lack of complete reporting of PA programs in RCTs for the management of JIA and the variation in scores and assessed elements among standardized assessment tools show the need to improve reporting. Using the most comprehensive standardized tool (i.e., the CERT) and providing accessible supplemental information on PA programs may improve the reporting quality of PA programs in RCTs and help reproduce PA programs in research and clinical practice.