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1.
BMC Health Serv Res ; 24(1): 1114, 2024 Sep 27.
Artículo en Inglés | MEDLINE | ID: mdl-39334077

RESUMEN

BACKGROUND: Poorly supported transitions from pediatric to adult healthcare can lead to negative health outcomes for youth and their families. To better understand the current landscape of healthcare transition care across Canada, the Canadian Health Hub in Transition (the "Transition Hub", established in 2019) identified a need to: (1) describe programs and services supporting the transition from pediatric to adult healthcare across Canada; and (2) identify strengths, barriers, and gaps affecting the provision of transition services. METHODS: Our project included two iterative steps: a national survey followed by a qualitative descriptive study. Service providers were recruited from the Transition Hub and invited to complete the survey and participate in the qualitative study. The survey was used to collect program information (e.g., setting, clinical population, program components), and semi-structured interviews were used to explore providers' perspectives on strengths, barriers, and gaps in transition services. Qualitative data were analyzed using the Framework Method. RESULTS: Fifty-one surveys were completed, describing 48 programs (22 pediatric, 19 bridging, and 7 adult) across 9 provinces. Almost half of the surveyed programs were in Ontario (44%) and most programs were based in hospital (65%) and outpatient settings (73%). There was wide variation in the ages served, with most programs focused on specific diagnostic groups. Qualitative findings from 23 interviews with service providers were organized into five topics: (1) measuring transition success; (2) program strengths; (3) barriers and gaps; (4) strategies for improvement; and (5) drivers for change. CONCLUSIONS: While national transition guidelines exist in Canada, there is wide variation in the way young people and their families are supported. A national strategy, backed by local leadership, is essential for instigating system change toward sustainable and universally accessible support for healthcare transition in Canada.


Asunto(s)
Investigación Cualitativa , Transición a la Atención de Adultos , Humanos , Canadá , Transición a la Atención de Adultos/organización & administración , Adolescente , Femenino , Masculino , Adulto , Adulto Joven , Encuestas y Cuestionarios , Niño , Accesibilidad a los Servicios de Salud
2.
J Med Internet Res ; 26: e45751, 2024 Feb 08.
Artículo en Inglés | MEDLINE | ID: mdl-38329799

RESUMEN

BACKGROUND: Federated digital identifiers (FDIs) have been cited to improve the interoperability of data and information management while enhancing the privacy of individuals verifying their identity on the web. Many countries around the world have implemented FDIs in various sectors, such as banking and government. Similarly, FDIs could improve the experience for those wanting to access their health care information; however, they have only been introduced in a few jurisdictions around the world, and their impact remains unclear. OBJECTIVE: The main objective of this environmental scan was to describe how FDIs have been established and implemented to enable patients' access to health care. METHODS: We conducted this study in 2 stages, with the primary stage being a rapid review, which was supplemented by a targeted gray literature search. Specifically, the rapid review was conducted through a database search of MEDLINE and Embase, which generated a list of countries and their services that use FDIs in health care. This list was then used to conduct a targeted gray literature search using the Google search engine. RESULTS: A total of 93 references from the database and targeted Google searches were included in this rapid review. FDIs were implemented in health care in 11 countries (Australia, Belgium, Canada, Denmark, Estonia, Finland, Iceland, Norway, Singapore, Sweden, and Taiwan) and exclusively used with a patient-accessible electronic health record system through a single sign-on interface. The most common FDIs were implemented nationally or provincially, and establishing them usually required individuals to visit a bank or government office in person. In contrast, some countries, such as Australia, allow individuals to verify their identities entirely on the web. We found that despite the potential of FDIs for use in health care to facilitate the amalgamation of health information from different data sources into one platform, the adoption of most health care services that use FDIs remained below 30%. The exception to this was Australia, which had an adoption rate of 90%, which could be correlated with the fact that it leveraged an opt-out consent model. CONCLUSIONS: This rapid review highlights key features of FDIs across regions and elements associated with higher adoption of the patient-accessible electronic health record systems that use them, like opt-out registration. Although FDIs have been reported to facilitate the collation of data from multiple sources through a single sign-on interface, there is little information on their impact on care or patient experience. If FDIs are used to their fullest potential and implemented across sectors, adoption rates within health care may also improve.


Asunto(s)
Bases de Datos Factuales , Atención a la Salud , Ciencia de la Información , Humanos , Ciencia de la Información/métodos , Ciencia de la Información/normas , Registros Electrónicos de Salud/organización & administración , Sistemas de Registros Médicos Computarizados
3.
AIDS Behav ; 2023 Oct 23.
Artículo en Inglés | MEDLINE | ID: mdl-37870691

RESUMEN

The 2022 outbreak of mpox disproportionately impacted men who have sex with men and people living with HIV. As such, HIV organizations were uniquely situated to reach populations affected by mpox. However, the extent to which these organizations pivoted to address mpox, and what form mpox messaging took, is unknown. We conducted a rapid environmental scan of 29 HIV or sexual health organizations to assess the frequency and content of mpox messaging in August 2022, the peak of the mpox outbreak in Miami, FL. Approximately half of the organizations provided mpox messaging, most of which was accurate. Only 5% of the messages were in Spanish and 4% in Spanish and Haitian Creole. Our findings suggest HIV organizations' pivot to mpox messaging may have been delayed overall and in reaching Spanish- and Haitian Creole-speaking communities. Results could inform modifications to mpox messaging campaigns and future outbreaks that disproportionately affect minoritized communities.


RESUMEN: El brote de la viruela del mono en 2022 afectó desproporcionadamente a hombres que tienen relaciones sexuales con hombres y personas que viven con el VIH. Como tal, las organizaciones dedicadas al VIH estaban en una posición única para llegar a las poblaciones afectadas por la viruela del mono. Sin embargo, no se sabe en qué medida estas organizaciones cambiaron su enfoque para abordar la viruela del mono y qué forma tomó la mensajería sobre a la viruela del mono. Realizamos un escaneo ambiental rápido de 29 organizaciones de VIH o salud sexual para evaluar la frecuencia y el contenido de la mensajería sobre la viruela del mono en agosto de 2022, en el pico del brote de la viruela del mono en Miami, Florida. Aproximadamente la mitad de las organizaciones proporcionaron mensajería sobre la viruela del mono, la mayoría de la cual era precisa. Solo el 5% de los mensajes estaban en español y el 4% en español y criollo haitiano. Nuestros hallazgos sugieren que el cambio de enfoque de las organizaciones de VIH hacia la mensajería sobre la viruela del mono puede haber sido en general demorado y que no llegó adecuadamente a las comunidades de habla hispana y criollo haitiano. Los resultados podrían informar modificaciones en las campañas de mensajería sobre la viruela del mono y en futuros brotes que afecten desproporcionadamente a comunidades minorizadas.

4.
BMC Health Serv Res ; 23(1): 1289, 2023 Nov 23.
Artículo en Inglés | MEDLINE | ID: mdl-37996845

RESUMEN

OBJECTIVE: We aimed to explore the construct of "high need" and identify common need domains among high-need patients, their care professionals, and healthcare organizations; and to describe the interventions that health care systems use to address these needs, including exploring the potential unintended consequences of interventions. METHODS: We conducted a modified Delphi panel informed by an environmental scan. Expert stakeholders included patients, interdisciplinary healthcare practitioners (physicians, social workers, peer navigators), implementation scientists, and policy makers. The environmental scan used a rapid literature review and semi-structured interviews with key informants who provide healthcare for high-need patients. We convened a day-long virtual panel meeting, preceded and followed by online surveys to establish consensus. RESULTS: The environmental scan identified 46 systematic reviews on high-need patients, 19 empirical studies documenting needs, 14 intervention taxonomies, and 9 studies providing construct validity for the concept "high need." Panelists explored the construct and terminology and established that individual patients' needs are unique, but areas of commonality exist across all high-need patients. Panelists agreed on 11 domains describing patient (e.g., social circumstances), 5 care professional (e.g., communication), and 8 organizational (e.g., staffing arrangements) needs. Panelists developed a taxonomy of interventions with 15 categories (e.g., care navigation, care coordination, identification and monitoring) directed at patients, care professionals, or the organization. The project identified potentially unintended consequences of interventions for high-need patients, including high costs incurred for patients, increased time and effort for care professionals, and identification of needs without resources to respond appropriately. CONCLUSIONS: Care for high-need patients requires a thoughtful approach; differentiating need domains provides multiple entry points for interventions directed at patients, care professionals, and organizations. Implementation efforts should consider outlined intended and unintended downstream effects on patients, care professionals, and organizations.


Asunto(s)
Atención a la Salud , Médicos , Humanos , Trabajadores Sociales , Comunicación
5.
Brain Inj ; 37(4): 337-351, 2023 03 21.
Artículo en Inglés | MEDLINE | ID: mdl-36533924

RESUMEN

BACKGROUND: Acquired Brain Injury (ABI) is the leading cause of death and disability in children, yet educators report a lack of knowledge about ABI and supporting students with ABI. With no formal learning about ABI, education professionals may turn to the internet for information. OBJECTIVES: To find online resources about supporting students with ABI, in any format, available freely and publicly, aimed toward elementary educators and that could be applied in a Canadian context. METHODS: We performed an environmental scan using keyword Google searches, key websites, and expert recommendations. The search was performed twice: 2018 and 2021. RESULTS: 96 resources were included after screening. The resources were published by organizations in the United States (n = 57), Canada (n = 19), United Kingdom (n = 16), Australia (n = 3) and New Zealand (n = 1). Traumatic brain injury and concussion were the most commonly addressed type of ABI, and Short Fact/Information sheets were the most common resource format. Between 2018 and 2021, 13 previously included resource links were no longer accessible. CONCLUSIONS: This scan suggests that there are many online resources available to educators in a variety of formats, and that information online can be transient. Future studies should evaluate the accuracy and quality of the resources available.


Asunto(s)
Conmoción Encefálica , Lesiones Traumáticas del Encéfalo , Lesiones Encefálicas , Humanos , Niño , Estados Unidos , Canadá/epidemiología , Lesiones Encefálicas/diagnóstico por imagen , Internet
6.
J Med Internet Res ; 25: e45287, 2023 08 30.
Artículo en Inglés | MEDLINE | ID: mdl-37647120

RESUMEN

BACKGROUND: Virtual care was rapidly integrated into pediatric health services during the COVID-19 pandemic. While virtual care offers many benefits, it is necessary to better understand the experiences of those who receive, deliver, and coordinate virtual care in order to support sustainable, high-quality, and patient-centered health care. To date, methods implemented to evaluate users' experiences of virtual care have been highly variable, making comparison and data synthesis difficult. OBJECTIVE: This study aims to describe evaluation strategies currently used to understand personal experiences with pediatric virtual care in Canada. METHODS: In this mixed methods environmental scan, we first distributed a web-based questionnaire to clinical, research, and operational leaders delivering and evaluating pediatric virtual care in Canada. The questionnaire collected information about how experiences with virtual care have been or are currently being evaluated and whether these evaluations included the perspectives of children or youth, families, providers, or support staff. Second, respondents were asked to share the questions they used in their evaluations, and a content analysis was performed to identify common question categories. Third, we conducted semistructured interviews to further explore our respondents' evaluation experiences across 4 domains-evaluation approaches, distribution methods, response rates, and lessons learned-and interest in a core set of questions for future evaluations. RESULTS: There were 72 respondents to the web-based questionnaire; among those who had conducted an evaluation, we identified 15 unique evaluations, and 14 of those provided a copy of the tools used to evaluate virtual care. These evaluations measured the virtual care experiences of parents or caregivers (n=15, 100%), children or youth (n=11, 73%), health care providers (n=11, 73%), and support staff (n=4, 27%). The most common data collection method used was electronic questionnaires distributed by email. Two respondents used validated tools; the remainder modified existing tools or developed new tools. Content analysis of the 14 submitted questionnaires revealed that the most common questions were about overall participant satisfaction, the comparison of virtual care to in-person care, and whether participants would choose virtual care options in the future. Interview findings indicate respondents frequently relied on methods used by peers and that a standardized, core set of questions to evaluate experiences with virtual care would be helpful to improve evaluation practices and support pediatric health care delivery. CONCLUSIONS: At our institution and elsewhere in Canada, experiences with pediatric virtual care have been evaluated using a variety of methods. A more consistent evaluation approach using standardized tools may enable more regular comparisons of experiences with virtual care and the synthesis of findings across health care settings. In turn, this may better inform our approach to virtual care, improve its integration into health systems, and facilitate sustainable, high-quality, patient-centered care.


Asunto(s)
COVID-19 , Adolescente , Humanos , Niño , Pandemias , Canadá , Correo Electrónico , Electrónica
7.
Cancer Control ; 29: 10732748221132516, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-36224082

RESUMEN

BACKGROUND: Colorectal cancer (CRC) is the 3rd most frequently diagnosed cancer and the 2nd leading cause of cancer death in the United States (US), and incidence and mortality rates in Oklahoma are higher for many American Indian (AI) populations than other populations. The AI CRC Screening Consortium addresses major regional CRC screening disparities among AIs with shared objectives to increase CRC screening delivery and uptake in AIs aged 50 to 75 years at average risk for CRC and to assess the effectiveness of implementations of the interventions. This manuscript reports environmental scan findings related to current practices and multi-stakeholder experiences with CRC screening in two Oklahoma Indian health care systems. METHOD: We conducted a mixed methods environmental scan across five clinical sites and with multiple stakeholders to determine the scope and scale of colorectal cancer screening in two separate AI health care delivery systems in Oklahoma. Data collection consisted of a mixture of individual interviews and group discussions at an urban site, and four clinical care sites within a tribal health system. RESULTS: Sixty-two individuals completed interviews. Data from these interviews will inform the development of evidence-based intervention strategies to increase provider delivery, community access to, and community priority for CRC screening in diverse AI health care delivery systems. Conversations with patients, providers, and clinical leadership point to individual and system-level opportunities for improvement at each site, shaped in part by differences in the delivery of services, structure of the health care system, and capacity to implement new intervention strategies. The thematic areas most central to the process of evidenced-based intervention development included: current practices, needs and recommendations, and CRC site priorities. CONCLUSION: Environmental scan data indicated clear opportunities for individual and system-level interventions to enhance CRC screening and was critical for understanding readiness for EBI implementation at each site.


Asunto(s)
Neoplasias Colorrectales , Detección Precoz del Cáncer , Neoplasias Colorrectales/epidemiología , Recolección de Datos , Humanos , Tamizaje Masivo , Estados Unidos
8.
BMC Public Health ; 22(1): 915, 2022 05 09.
Artículo en Inglés | MEDLINE | ID: mdl-35534847

RESUMEN

BACKGROUND: Despite the high prevalence of alcohol use and marketing in many settings across sub-Saharan Africa, few studies have systematically sought to assess alcohol marketing exposure, particularly in vulnerable areas such as urban slums where alcohol is often highly prevalent but where educational programs and alcohol prevention messages are scarce. OBJECTIVE: To pilot test the development and implementation of environmental scans of alcohol advertisements in five urban slums across different areas of Kampala, Uganda: Bwaise, Kamwokya, Makindye, Nakulabye, and Nateete. METHODS: Each of the five scans was conducted in geographical circles, within a 500-m radius of a Uganda Youth Development Link (UYDEL) drop-in Center using a container-based approach. Using a Garmin GPS with photo capabilities and a tablet for data entry, teams of at least two trained researchers walked the main roads within the target area and gathered information about each alcohol advertisement including its location, type, size, and placement and other characteristics. Data with the GPS coordinates, photos and descriptive details of the adverts were merged for analyses. RESULTS: A total of 235 alcohol adverts were found across all five data collection sites reflecting 32 different brands. The majority of the adverts (85.8%) were smaller and medium sizes placed by restaurants and bars, stores and kiosks, and liquor stores. The most frequently noted types of alcohol in the adverts were spirits (50.6%) and beer (30.6%). RECOMMENDATIONS: The pilot test of the methodology we developed indicated that implementation was feasible, although challenges were noted. Since monitoring alcohol marketing is key for addressing underage alcohol use and harm, the advantages and disadvantages of the approach we developed are discussed. Future research needs to strengthen and simplify strategies for monitoring alcohol marketing in low-resource settings such as urban slums which have unique features that need to be considered. Meanwhile, the findings may yield valuable information for stakeholders and to guide intervention developments and alcohol marketing policy to protect youth.


Asunto(s)
Publicidad , Áreas de Pobreza , Adolescente , Consumo de Bebidas Alcohólicas/epidemiología , Consumo de Bebidas Alcohólicas/prevención & control , Estudios Transversales , Humanos , Uganda/epidemiología
9.
Early Child Educ J ; 50(8): 1417-1428, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-36339969

RESUMEN

The objective was to conduct an environmental scan of existing Canadian childcare resources targeting nutrition, physical activity, sedentary behaviour, and/or sleep. A comprehensive search plan was conducted that involved four search strategies: (1) grey literature databases, (2) customized Google search engines, (3) targeted websites, and (4) consultation with content experts. A resource (i.e., information, materials) must have been created by government or an organization/agency within Canada, available in English, intended for childcare educators or directors working with children ≤ 5 years of age, and focused on targeting improvements in nutrition, physical activity, sedentary behaviour, and/or sleep. The quality of each included resource was assessed using a modified version of the Authority, Accuracy, Coverage, Objectivity, Date, Significance checklist. A total of 192 eligible resources were included. Most resources targeted only nutrition (n = 101) or physical activity (n = 60), and few resources targeted only sedentary behaviour (n = 2) or sleep (n = 1). The remaining 28 resources targeted more than one health behaviour. The 4 most common topics of resources were menu/meal planning (n = 55), healthy nutrition practices/environment (n = 37), physical activities/games (n = 33), and nutrition/food literacy (n = 20). Only 52 included resources cited evidence. One-third of the included resources (n = 64) were rated as high quality, including 55 that received a point for the significance criterion. Therefore, numerous high quality Canadian childcare resources exist for nutrition and physical activity. Future resource development is needed for sedentary behaviour and sleep. Findings can assist future intervention work and the database of resources can be utilized by relevant stakeholders to support other childcare initiatives. Supplementary Information: The online version contains supplementary material available at 10.1007/s10643-021-01266-2.

10.
Health Expect ; 24(5): 1763-1779, 2021 10.
Artículo en Inglés | MEDLINE | ID: mdl-34288282

RESUMEN

BACKGROUND: Engaging youth throughout the research process improves research quality and outcomes. Youth advisory groups provide one way for youth to express their opinions on relevant issues. OBJECTIVE: This study aimed to identify research- and health-related youth advisory groups ('groups') in Canada and understand the best practices of these groups. METHODS: Google searches and supplementary methods were used to identify relevant groups in Canada. Group information was extracted from websites or through interviews with key informants. RESULTS: We identified 40 groups. Groups were commonly part of a hospital/healthcare facility, nonprofit/health organization or research group. The majority focused on a specific content area, most commonly, mental health. Over half the groups advised on health services. Members' ages ranged from 9 to 35 years. The number of members ranged from 5 to 130. Interviews (n = 12) identified seven categories relating to group practices: (a) group purpose/objectives, (b) group development, (c) group operations, (d) group structure, (e) adult involvement, (f) membership and recruitment and (g) group access. Challenges and facilitators to the success of groups were described within the following themes: (a) retaining engagement, (b) creating a safe environment and (c) putting youth in positions of influence. Advice and recommendations were provided regarding the development of a new group. CONCLUSION: This study provides a comprehensive overview of research- and health-related youth advisory groups in Canada. This information can be used to identify groups that stakeholders could access as well as inform the development of a new group. PATIENT OR PUBLIC CONTRIBUTION: Youth advisory group representatives were interviewed as part of the study.


Asunto(s)
Salud Mental , Adolescente , Adulto , Canadá , Niño , Humanos , Adulto Joven
11.
J Med Internet Res ; 23(10): e29441, 2021 10 19.
Artículo en Inglés | MEDLINE | ID: mdl-34665144

RESUMEN

BACKGROUND: Providing parents with resources that aid in the identification and management of acute childhood illnesses helps those parents feel better equipped to assess their children's health and significantly changes parental health-seeking behaviors. Some of these resources are limited by accessibility and scalability. Remote locations and staffing limitations create challenges for parents aiming to access their child's health information. Mobile health apps offer a scalable, accessible solution for improving health literacy by enabling access to health information through mobile devices. OBJECTIVE: The aim of our study is to create an inventory of acute childhood illness apps that are available to North American parents and caregivers, assess their quality, and identify the areas in which future apps can be improved. METHODS: We conducted an environmental scan to identify and summarize app information for parents and digital health researchers. The Google and Apple app marketplaces were used as search platforms. We built a list of search terms and searched the platforms for apps targeted at parents and related to acute pediatric illnesses in the United States and Canada. We assessed apps meeting the inclusion criteria using the Mobile App Rating Scale (MARS), a validated tool for assessing the quality of health apps. The MARS examines apps on 5 subscales: engagement, functionality, aesthetics, information quality, and subjective quality. Data were analyzed by MARS subscale averages and individual item scores. RESULTS: Overall, 650 unique apps were screened, and 53 (8.2%) were included. On a scale of 1-5, apps had an average engagement score of 2.82/5 (SD 0.86), functionality score of 3.98/5 (SD 0.72), aesthetics score of 3.09/5 (SD 0.87), information quality score of 2.73/5 (SD 1.32), and subjective quality score of 2.20/5 (SD 0.79). On the same scale of 1-5, app scores ranged from 2.2/5 to 4.5/5 (mean 3.2, SD 0.6). The top 3 MARS-scored apps were Baby and Child First Aid (4.5/5), Ada (4.5/5), and HANDi Paediatric (4.2/5). Taken together, the top 3 apps covered topics of emergency pediatric first aid, identification of (and appropriate response to) common childhood illnesses, a means of checking symptoms, and a means of responding to emergency situations. There was a lack of Canadian-based app content available to parents in both marketplaces; this space was filled with content originating primarily in the United Kingdom and the United States. In addition, published evidence of the impact of the included apps was poor: of 53 apps, only 5 (9%) had an evidence base showing that the app had been trialed for usability or efficacy. CONCLUSIONS: There is a need for evidence-based acute childhood illness apps of Canadian origin. This environmental scan offers a comprehensive picture of the health app landscape by examining trends in acute childhood illness apps that are readily available to parents and by identifying gaps in app design.


Asunto(s)
Aplicaciones Móviles , Canadá , Niño , Atención a la Salud , Conductas Relacionadas con la Salud , Humanos , Padres
12.
J Med Internet Res ; 22(5): e17002, 2020 05 29.
Artículo en Inglés | MEDLINE | ID: mdl-32469321

RESUMEN

BACKGROUND: There is increasing interest in shared decision making (SDM) in Australia. Question prompt lists (QPLs) support question asking by patients, a key part of SDM. QPLs have been studied in a variety of settings, and increasingly the internet provides a source of suggested questions for patients. Environmental scans have been shown to be useful in assessing the availability and quality of online SDM tools. OBJECTIVE: This study aimed to assess the number and readability of QPLs available to users via Google.com.au. METHODS: Our environmental scan used search terms derived from literature and reputable websites to search for QPLs available via Google.com.au. Following removal of duplicates from the 4000 URLs and 22 reputable sites, inclusion and exclusion criteria were applied to create a list of unique QPLs. A sample of 20 QPLs was further assessed for list length, proxy measures of quality such as a date of review, and evidence of doctor endorsement. Readability of the sample QPL instructions and QPLs themselves was assessed using Flesch Reading Ease and Flesch-Kincaid Grade Level scores. RESULTS: Our environmental scan identified 173 unique QPLs available to users. Lists ranged in length from 1 question to >200 questions. Of our sample, 50% (10/20) had a listed date of creation or update, and 60% (12/20) had evidence of authorship or source. Flesch-Kincaid Grade Level scores for instructions were higher than for the QPLs (grades 10.3 and 7.7, respectively). There was over a 1 grade difference between QPLs from reputable sites compared with other sites (grades 4.2 and 5.4, respectively). CONCLUSIONS: People seeking questions to ask their doctor using Google.com.au encounter a vast number of question lists that they can use to prepare for consultations with their doctors. Markers of the quality or usefulness of various types of online QPLs, either surrogate or direct, have not yet been established, which makes it difficult to assess the value of the abundance of lists. Doctor endorsement of question asking has previously been shown to be an important factor in the effectiveness of QPLs, but information regarding this is not readily available online. Whether these diverse QPLs are endorsed by medical practitioners warrants further investigation.


Asunto(s)
Información de Salud al Consumidor , Humanos , Internet , Encuestas y Cuestionarios
13.
Health Res Policy Syst ; 18(1): 130, 2020 Nov 03.
Artículo en Inglés | MEDLINE | ID: mdl-33138844

RESUMEN

The recent article by Nagi et al. (Health Res Policy Syst 18:37, 2020) considerably underestimates the size of the global health research community in Canada as well as its geographical distribution, its breadth and depth of experience and expertise, and its overall contribution to addressing the world's greatest global health priorities. Global health researchers, practitioners, policy-makers, strategists and funders/donors would benefit from a more accurate in-depth and comprehensive analysis.


Asunto(s)
Salud Global , Investigadores , Canadá , Humanos
14.
J Assist Reprod Genet ; 37(8): 1913-1922, 2020 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-32472448

RESUMEN

PURPOSE: In vitro fertilization with preimplantation genetic testing (IVF+PGT-M) reduces the risk of having a child affected by a heritable condition, yet only one-third of eligible patients are aware of this reproductive option. Access to education materials written at appropriate literacy levels could raise patients' awareness, but there is a mismatch between patient reading ability and the literacy demand of most materials. This study aimed to systematically identify written education materials on IVF+PGT-M and evaluate their literacy levels. We hypothesized that materials would fail to meet standards set by the Joint Commission and Centers for Disease Control and Prevention (CDC). METHODS: To identify patient education materials about IVF+PGT-M from academic databases and public-facing sources, an environmental scan was performed. Materials were analyzed using three validated scales: Simple Measure of Gobbledygook, Patient Education Materials Assessment Tool, and Clear Communication Index. RESULTS: Seventeen patient education materials about IVF+PGT-M were identified from patient education databases, a consumer search engine, and professional organizations. The median reading level was 14.5 grade, median understandability was 74.2%, and median comprehensibility was 73.3%. CONCLUSIONS: For most American adults, materials about IVF+PGT-M are not readable, understandable, or clear. The Joint Commission requires patient education materials be written at or below 5th grade reading level and the CDC recommends a 90% minimum score for comprehensibility. No evaluated material met these guidelines. Patient education materials that exceed average American literacy skills may perpetuate disparities in the utilization of IVF+PGT-M. Materials that communicate this complicated subject at an understandable level are needed.


Asunto(s)
Fertilización In Vitro/psicología , Pruebas Genéticas , Alfabetización/psicología , Diagnóstico Preimplantación/psicología , Adulto , Transferencia de Embrión/psicología , Familia/psicología , Femenino , Humanos , Internet , Educación del Paciente como Asunto , Embarazo , Lectura , Estados Unidos/epidemiología
15.
J Cancer Educ ; 34(5): 1014-1023, 2019 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-30054900

RESUMEN

Human papillomavirus (HPV) causes over 39,000 cancers annually in the US. The HPV vaccine is safe and effective but underutilized to prevent cancer. In the US, only 37% of adolescents ages 13-17 have received the full vaccine series. Ineffective messages and misinformation about the vaccine have negatively impacted its uptake in the US. It was initially only approved for girls and early marketing focused on cervical cancer prevention and prevention of HPV as a sexually transmitted infection. Understanding effective messages and methods of dissemination is critical to address suboptimal vaccine uptake. Qualitative interviews were conducted with 34 participants to identify best practices for HPV vaccination messaging in SC. Participants included state leaders representing public health, medical associations, K-12 public schools, universities, insurers, and cancer advocacy organizations. Recommended HPV vaccine messages included focusing on cancer prevention rather than sexual transmission, routinizing the vaccine, and highlighting risks/costs of HPV. Targeting messages to specific demographics and utilizing multiple media platforms to disseminate consistent, scientifically accurate messages were recommended. Strategies such as appealing to parents' moral responsibility to protect their children against cancer and addressing the ubiquity of HPV and sharing growing evidence that HPV may be transmitted independent of sexual activity were also recommended. Suggested HPV vaccine messengers included trusted peers, medical professionals, and health associations. Culture-centered narratives to raise the voices of cancer survivors and parents were also recommended. This study provides an array of HPV vaccination messages and dissemination strategies for optimizing HPV vaccination rates.


Asunto(s)
Comunicación en Salud , Conocimientos, Actitudes y Práctica en Salud , Infecciones por Papillomavirus/prevención & control , Vacunas contra Papillomavirus/administración & dosificación , Padres/educación , Aceptación de la Atención de Salud , Vacunación/psicología , Adolescente , Adulto , Niño , Femenino , Humanos , Masculino , Persona de Mediana Edad , Motivación , Narración , Papillomaviridae/aislamiento & purificación , Infecciones por Papillomavirus/psicología , Infecciones por Papillomavirus/virología , Padres/psicología , Conducta Sexual , Vacunación/estadística & datos numéricos , Adulto Joven
16.
Health Expect ; 21(1): 316-326, 2018 02.
Artículo en Inglés | MEDLINE | ID: mdl-28881071

RESUMEN

BACKGROUND: The availability and effectiveness of decision aids (DAs) on early abortion methods remain unknown, despite their potential for supporting women's decision making. OBJECTIVE: To describe the availability, impact and quality of DAs on surgical and medical early abortion methods for women seeking induced abortion. SEARCH STRATEGY: For the systematic review, we searched MEDLINE, Cochrane Library, CINAHL, EMBASE and PsycINFO. For the environmental scan, we searched Google and App Stores and consulted key informants. INCLUSION CRITERIA: For the systematic review, we included studies evaluating an early abortion method DA (any format and language) vs a comparison group on women's decision making. DAs must have met the Stacey et al (2014). Cochrane review definition of DAs. For the environmental scan, we included English DAs developed for the US context. DATA EXTRACTION AND SYNTHESIS: We extracted study and DA characteristics, assessed study quality using the Effective Practice and Organization of Care risk of bias tool and assessed DA quality using International Patient Decision Aid Standards (IPDAS). RESULTS: The systematic review identified one study, which found that the DA group had higher knowledge and felt more informed. The evaluated DA met few IPDAS criteria. In contrast, the environmental scan identified 49 DAs created by non-specialists. On average, these met 28% of IPDAS criteria for Content, 22% for Development and 0% for Effectiveness. CONCLUSIONS: Research evaluating DAs on early abortion methods is lacking, and although many tools are accessible, they demonstrate suboptimal quality. Efforts to revise existing or develop new DAs, support patients to identify high-quality DAs and facilitate non-specialist developers' adoption of best practices for DA development are needed.


Asunto(s)
Aborto Inducido/métodos , Toma de Decisiones , Técnicas de Apoyo para la Decisión , Conducta de Elección , Femenino , Humanos , Embarazo , Primer Trimestre del Embarazo , Investigación Cualitativa
17.
J Genet Couns ; 2018 May 16.
Artículo en Inglés | MEDLINE | ID: mdl-29770910

RESUMEN

An environmental scan (ES) is an efficient mixed-methods approach to collect and interpret relevant data for strategic planning and project design. To date, the ES has not been used nor evaluated in the clinical cancer genetics setting. We created and implemented an ES to inform the design of a quality improvement (QI) project to increase the rates of adherence to national guidelines for cancer genetic counseling and genetic testing at three unique oncology care settings (OCS). The ES collected qualitative and quantitative data from reviews of internal processes, past QI efforts, the literature, and each OCS. The ES used a data collection form and semi-structured interviews to aid in data collection. The ES was completed within 6 months, and sufficient data were captured to identify opportunities and threats to the QI project's success, as well as potential barriers to, and facilitators of guideline-based cancer genetics services at each OCS. Previously unreported barriers were identified, including inefficient genetic counseling appointment scheduling processes and the inability to track referrals, genetics appointments, and genetic test results within electronic medical record systems. The ES was a valuable process for QI project planning at three OCS and may be used to evaluate genetics services in other settings.

18.
BMC Med Inform Decis Mak ; 18(1): 104, 2018 11 19.
Artículo en Inglés | MEDLINE | ID: mdl-30453942

RESUMEN

BACKGROUND: To identify publicly available internet resources and assess their likelihood to support women making informed decisions about, and between, fertility preservation procedures before starting their cancer treatment. METHODS: A survey of publically available internet resources utilising an environmental scan method. Inclusion criteria were applied to hits from searches of three data sources (November 2015; repeated June 2017): Google (Chrome) for patient resources; repositories for clinical guidelines and projects; distribution email lists to contact patient decision aid experts. The Data Extraction Sheet applied to eligible resources elicited: resource characteristics; informed and shared decision making components; engagement health services. RESULTS: Four thousand eight hundred fifty one records were identified; 24 patient resources and 0 clinical guidelines met scan inclusion criteria. Most resources aimed to inform women with cancer about fertility preservation procedures and infertility treatment options, but not decision making between options. There was a lack of consistency about how health conditions, decision problems and treatment options were described, and resources were difficult to understand. CONCLUSIONS: Unless developed as part of a patient decision aid project, resources did not include components to support proactively women's fertility preservation decisions. Current guidelines help people deliver information relevant to treatment options within a single disease pathway; we identified five additional components for patient decision aid checklists to support more effectively people's treatment decision making across health pathways, linking current with future health problems.


Asunto(s)
Información de Salud al Consumidor , Toma de Decisiones , Técnicas de Apoyo para la Decisión , Preservación de la Fertilidad , Internet , Neoplasias/terapia , Adulto , Información de Salud al Consumidor/estadística & datos numéricos , Femenino , Humanos , Internet/estadística & datos numéricos
19.
J Neuroeng Rehabil ; 15(1): 40, 2018 05 16.
Artículo en Inglés | MEDLINE | ID: mdl-29769082

RESUMEN

In the past, neurorehabilitation for individuals with neurological damage, such as spinal cord injury (SCI), was focused on learning compensatory movements to regain function. Presently, the focus of neurorehabilitation has shifted to functional neurorecovery, or the restoration of function through repetitive movement training of the affected limbs. Technologies, such as robotic devices and electrical stimulation, are being developed to facilitate repetitive motor training; however, their implementation into mainstream clinical practice has not been realized. In this commentary, we examined how current SCI rehabilitation research aligns with the potential for clinical implementation. We completed an environmental scan of studies in progress that investigate a physical intervention promoting functional neurorecovery. We identified emerging interventions among the SCI population, and evaluated the strengths and gaps of the current direction of SCI rehabilitation research. Seventy-three study postings were retrieved through website and database searching. Study objectives, outcome measures, participant characteristics and the mode(s) of intervention being studied were extracted from the postings. The FAME (Feasibility, Appropriateness, Meaningfulness, Effectiveness, Economic Evidence) Framework was used to evaluate the strengths and gaps of the research with respect to likelihood of clinical implementation. Strengths included aspects of Feasibility, as the research was practical, aspects of Appropriateness as the research aligned with current scientific literature on motor learning, and Effectiveness, as all trials aimed to evaluate the effect of an intervention on a clinical outcome. Aspects of Feasibility were also identified as a gap; with two thirds of the studies examining emerging technologies, the likelihood of successful clinical implementation was questionable. As the interventions being studied may not align with the preferences of clinicians and priorities of patients, the Appropriateness of these interventions for the current health care environment was questioned. Meaningfulness and Economic Evidence were also identified as gaps since few studies included measures reflecting the perceptions of the participants or economic factors, respectively. The identified gaps will likely impede the clinical uptake of many of the interventions currently being studied. Future research may lessen these gaps through a staged approach to the consideration of the FAME elements as novel interventions and technologies are developed, evaluated and implemented.


Asunto(s)
Rehabilitación Neurológica/métodos , Rehabilitación Neurológica/tendencias , Traumatismos de la Médula Espinal/rehabilitación , Humanos , Evaluación de Resultado en la Atención de Salud
20.
BMC Health Serv Res ; 17(1): 154, 2017 02 21.
Artículo en Inglés | MEDLINE | ID: mdl-28222715

RESUMEN

BACKGROUND: Previous studies have demonstrated that organized, multidisciplinary care is the cornerstone of current strategies to reduce the death and disability caused by stroke. Identification of stroke units and an understanding of their composition and operation would provide insight for the further actions required to improve stroke care. The objective of this study was to identify and survey stroke units in Canada's largest province, Ontario (population of 13 million) in order to describe availability, structure, staffing, processes of care, and type of population stroke units serve. METHODS: The Ontario Stroke Network (2011) list of stroke units and snowball sampling was used to identify all stroke units. During 2013 - 2014 an interviewer conducted telephone surveys with the stroke unit managers using closed and semi-open ended questions. Descriptive statistics were used to summarize survey responses. RESULTS: The survey identified 32 stroke units, and a respondent from every stroke unit (100% response rate) was interviewed. Twenty one were acute stroke units, 10 were integrated stroke units and one was classified as a rehabilitation stroke unit. Stroke units were available in all 14 Local Health Integration Networks except Central West. The estimated average number of stroke patients served per stroke unit was 604 with six-fold variation (242 to 1480) across the province. The typical population served in stroke units were patients with either ischemic or hemorrhagic stroke. Data consistently reported on the processes of stroke care, including the availability of multidisciplinary staff, specific diagnostic imaging, use of validated assessment tools, and the delivery of patient education. Details about the core components of stoke care were provided by 16 stroke units (50%). CONCLUSIONS: This study demonstrates the heterogeneous structure of stroke units in Ontario and signaled potential disparity in access to stroke units. Many core components are in place, but half of the stroke units in Ontario do not meet all criteria. Areas for potential improvement include stroke care training for the multidisciplinary team, provision of individualized rehabilitation plans, and early discharge assessment.


Asunto(s)
Cuidados Críticos/organización & administración , Encuestas de Atención de la Salud , Accesibilidad a los Servicios de Salud/organización & administración , Unidades Hospitalarias/organización & administración , Especialidad de Fisioterapia/organización & administración , Rehabilitación de Accidente Cerebrovascular , Accidente Cerebrovascular/terapia , Cuidados Críticos/normas , Accesibilidad a los Servicios de Salud/normas , Necesidades y Demandas de Servicios de Salud , Unidades Hospitalarias/normas , Humanos , Ontario , Admisión y Programación de Personal , Especialidad de Fisioterapia/normas , Rehabilitación de Accidente Cerebrovascular/normas , Recursos Humanos
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