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1.
Healthc Manage Forum ; : 8404704241259652, 2024 Jun 17.
Artículo en Inglés | MEDLINE | ID: mdl-38881533

RESUMEN

As Canadian policy-makers recognize the urgency for concerted actions to reduce plastics (e.g., Canada's involvement in the International Plastics Treaty negotiations, Zero Plastic Waste Strategy, and single-use plastics regulations), the healthcare sector must also consider a more sustainable plastics system. In this context, the potential for novel bioplastics to mitigate healthcare's substantial plastic waste problem must be carefully interrogated. Our analysis examines the complexities of bioplastics, highlighting the technical challenges of identifying legitimate sustainable alternatives, and the practical barriers for implementing bioplastics as substitutes for consumable plastics in healthcare. We focus on the Canadian healthcare sector and regulatory landscape with the insights gained being applicable to other sectors and countries. Given the limitations identified, the focus on reducing consumption should remain the priority.

2.
BMC Health Serv Res ; 23(1): 231, 2023 Mar 09.
Artículo en Inglés | MEDLINE | ID: mdl-36890546

RESUMEN

BACKGROUND: While processes of adoption and the impacts of various health technologies have been extensively studied by health services and policy researchers, the influence of policy makers' governing styles on these processes have been largely neglected. Through a comparative analysis of non-invasive prenatal testing (NIPT) in the Canadian provinces of Ontario and Quebec, this article examines how decisions about this technology were shaped by contrasting political ideologies, resulting in vastly different innovation and adoption strategies and outcomes. METHODS: A comparative qualitative investigation comprising of a document analysis followed by semi-structured interviews with key informants. Interview participants were researchers, clinicians, and private sector medical laboratory employees based in Ontario and Quebec, Canada. Interviews were conducted both in person and virtually- owing partly to the COVID-19 pandemic - to garner perspectives regarding the adoption and innovation processes surrounding non-invasive prenatal testing in both provinces. All interviews were recorded and transcribed verbatim and data were analyzed using thematic analysis. RESULTS: Through an analysis of 21 in-depth interview transcripts and key documents, the research team identified three central themes: 1) health officials in each province demonstrated a unique approach to using the existing scholarly literature on NIPT; 2) each provincial government demonstrated its own preference for service delivery, with Ontario preferring private and Quebec preferring public; and finally, 3) both Ontario and Quebec's strategies to NIPT adoption and innovation was contextualized within each province's unique financial positioning and concerns. These findings illustrate how both Quebec's nationalist focus and use of industrial policy and Ontario's 'New Public Management' style had implications for how this emerging healthcare technology was made available within each province's publicly-financed health system. CONCLUSIONS: Our study reveals how these governments' differing approaches to using data and research, public versus private service delivery, and financial goals and concerns resulted in distinct testing technologies, access, and timelines for NIPT adoption. Our analysis demonstrates the need for health policy researchers, policy makers, and others to move beyond analyses solely considering clinical and health economic evidence to understand the impact of political ideologies and governing styles.


Asunto(s)
COVID-19 , Pandemias , Embarazo , Femenino , Humanos , Ontario , Quebec , Investigación Cualitativa , COVID-19/diagnóstico , COVID-19/epidemiología , Política de Salud , Tecnología Biomédica
3.
Int J Technol Assess Health Care ; 39(1): e67, 2023 Nov 06.
Artículo en Inglés | MEDLINE | ID: mdl-37929295

RESUMEN

OBJECTIVES: Health technology assessment (HTA) traditionally informs decision making for single health technologies, which could lead to ill-informed decisions, suboptimal care, and system inefficiencies. We explored opportunities for conceptualizing the decision space in HTA as a disease management question versus an intervention management question. METHODS: Semistructured interviews were conducted between April 2022 and October 2022 with purposefully selected individuals from national and provincial HTA agencies and related organizations in Canada. We conducted manual line by line coding of data informed by our interview guide and sensitizing concepts from the literature. One author coded the data, and findings were independently verified by a second author who coded a subset of transcripts. RESULTS: Twenty-four invitations were distributed, and eighteen individuals agreed to participate. A disease management approach to HTA was differentiated from traditional approaches as being disease-based, multi-interventional, and dynamic. There was general support for an explicit care pathway approach to HTA by informing discussions around patient choice and suboptimal care, creating a space where decision makers can collaborate on shared objectives, and in setting up a platform for open dialogue about managing high-cost and high-severity diseases. There are opportunities for a care pathway approach to be implemented that build on the strengths of the existing HTA system in Canada. CONCLUSIONS: A disease management approach may enhance the impact of HTA by supporting dynamic decision making that could better inform a proactive, resilient, and sustainable healthcare system in Canada.


Asunto(s)
Análisis de Sistemas , Evaluación de la Tecnología Biomédica , Humanos , Canadá
4.
Int J Health Plann Manage ; 38(2): 289-295, 2023 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-36734815

RESUMEN

Health systems have a duty to protect the health and well-being of individuals and populations. Yet, healthcare contributes about 4.6% of global greenhouse gas emissions. Health systems need to question and improve established practices, assume strong environmental leadership, and aim for ambitious, sometimes radical, actions in favour of the climate. In this paper, we interrogate the suitability and feasibility of integrating the aim of 'environmental sustainability' to form the 'Sextuple Aim.' Environmental sustainability may be in tension with, but also a potential lever to meet the other cardinal aims: (1) quality and experience of patient care; (2) population health; (3) quality of work and satisfaction of healthcare providers; (4) equity and inclusion; and (5) cost reduction. We propose policy and practical avenues to help move towards the Sextuple Aim.


Asunto(s)
Atención a la Salud , Planetas , Humanos
5.
Healthc Manage Forum ; 36(5): 351-356, 2023 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-37243610

RESUMEN

In an era of significant human and fiscal constraints, hospitals increasingly rely on industry representatives to fill gaps related to practice-based education. Given their dual sales and support functions, the extent to which education and support functions are, or ought to be, fulfilled by industry representatives is unclear. We conducted an interpretive qualitative study at a large, academic medical centre in Ontario, Canada, during 2021-2022, interviewing 36 participants across the organization with direct and varied experiences with industry-delivered education. We found that ongoing fiscal and human resource challenges prompted hospital leaders to outsource practice-based education to industry representatives, which created an expanded role for industry beyond initial product rollouts. Outsourcing, however, generated downstream costs to the organization and undermined the goals of practice-based education. To attract and retain clinicians, participants advocated for re-investment in practice-based education in-house, with a limited and supervised role for industry representatives.


Asunto(s)
Servicios Externos , Humanos , Hospitales , Investigación Cualitativa , Ontario
6.
Healthc Manage Forum ; 36(4): 207-216, 2023 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-37186690

RESUMEN

Personal Protective Equipment (PPE) that was intentionally designed and manufactured as reusable, including gowns, goggles, face shields, and elastomeric respirators, took on a heightened role during the pandemic. Healthcare workers who had access to these products and infrastructure for cleaning and sterilizing them had a greater sense of confidence to undertake their jobs due to an increased sense of personal safety. Using multiple data sources, including a literature review, roundtables, interviews, surveys, and Internet-based research, the project team investigated the impact of disposable PPE and role of reusable PPE during the pandemic in Canada. This research supports the claim that adopting and supporting reusable PPE systems throughout the health sector can, if used appropriately on an ongoing basis, provide continuous access to reusable PPE while also contributing many co-benefits, including lower costs, domestic jobs, and improved environmental performance such as reduced waste and greenhouse gas emissions.


Asunto(s)
Personal de Salud , Equipo de Protección Personal , Humanos , Canadá , Instituciones de Salud , Pandemias/prevención & control
7.
Can Fam Physician ; 67(6): 439-448, 2021 06.
Artículo en Inglés | MEDLINE | ID: mdl-34127469

RESUMEN

OBJECTIVE: To explore primary care providers' (PCPs') role in result notification for newborn screening (NBS) for cystic fibrosis (CF), given that expanded NBS has increased the number of positive screening test results, drawing attention to the role of PCPs in supporting families. DESIGN: Cross-sectional survey and qualitative interviews. SETTING: Ontario. PARTICIPANTS: Primary care providers (FPs, pediatricians, and midwives) who received a positive CF NBS result for an infant in their practice in the 6 months before the study. MAIN OUTCOME MEASURES: Whether the PCP notified the family of the initial positive CF screening result. RESULTS: Data from 321 PCP surveys (response rate of 51%) are reported, including 208 FPs, 68 pediatricians, and 45 midwives. Interviews were completed with 34 PCPs. Most (65%) surveyed PCPs reported notifying the infant's family of the initial positive screening result; 81% agreed that they have an important role to play in NBS; and 88% said it was important for PCPs, rather than the NBS centre, to notify families of initial positive results. With support and information from NBS centres, 68% would be extremely or very confident in doing so; this dropped to 54% when reflecting on their recent reporting experience. More than half (58%) of all PCPs said written point-of-care information from the NBS centre was the most helpful format. Adjusted for relevant factors, written educational information was associated with a lower rate of notifying families than written plus verbal information (risk ratio of 0.79; 95% CI 0.69 to 0.92). In the interviews, PCPs emphasized the challenge of balancing required content knowledge with the desire for the news to come from a familiar provider. CONCLUSION: Most PCPs notify families of NBS results and value this role. These data are relevant as NBS programs and other genomic services expand and consider ways of keeping PCPs confident and actively involved.


Asunto(s)
Fibrosis Quística , Tamizaje Neonatal , Estudios Transversales , Fibrosis Quística/diagnóstico , Humanos , Lactante , Recién Nacido , Ontario , Atención Primaria de Salud
8.
Can Fam Physician ; 67(6): e144-e152, 2021 06.
Artículo en Inglés | MEDLINE | ID: mdl-34127476

RESUMEN

OBJECTIVE: To explore primary care providers' (PCPs') preferred roles and confidence in caring for infants receiving a positive cystic fibrosis (CF) newborn screening (NBS) result, as well as management of CF family planning issues, given that expanded NBS has resulted in an increase in positive results. DESIGN: Mailed questionnaire. SETTING: Ontario. PARTICIPANTS: Ontario FPs, pediatricians, and midwives identified by Newborn Screening Ontario as having had an infant with a positive CF NBS result in their practice in the previous 6 months. MAIN OUTCOME MEASURE: Primary care providers' preferred roles in providing well-baby care for infants with positive CF screening results. RESULTS: Overall, 321 of 628 (51%) completed surveys (208 FPs, 68 pediatricians, 45 midwives). For well-baby care for infants confirmed to have CF, 77% of PCPs indicated they would not provide total care (ie, 68% would share care with other specialists and 9% would refer to specialists completely); for infants with an inconclusive CF diagnosis, 50% of PCPs would provide total care, 45% would provide shared care, and 5% would refer to a specialist; for CF carriers, 89% of PCPs would provide total care, 9% would provide shared care, and 2% would refer. Half (54%) of PCPs were extremely or very confident in providing reassurance about CF carriers' health. Only 25% knew how to order parents' CF carrier testing; 67% knew how to refer for prenatal diagnosis. Confidence in reassuring parents about the health of CF carrier children was associated with providing total well-baby care for CF carriers (risk ratio of 1.50; 95% CI 1.14 to 1.97) and infants with an inconclusive diagnosis (risk ratio of 3.30; 95% CI 1.34 to 8.16). CONCLUSION: Most PCPs indicated willingness to treat infants with a range of CF NBS results in some capacity. It is concerning that some indicated CF carriers should have specialist involvement and only half were extremely or very confident about reassuring families about carrier status. This raises issues about possible medicalization of those with carrier status, prompting the need for PCP education about genetic disorders and the meaning of genetic test results.


Asunto(s)
Fibrosis Quística , Tamizaje Neonatal , Niño , Fibrosis Quística/diagnóstico , Femenino , Personal de Salud , Humanos , Lactante , Recién Nacido , Ontario , Embarazo , Atención Primaria de Salud
9.
Healthc Manage Forum ; 34(5): 260-265, 2021 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-33998310

RESUMEN

The phrase, "the federal spending power," identifies the federal government's ability to spend in areas beyond its constitutional authority to legislate-a power that has supported the development of a national system of universal healthcare coverage in Canada. Even before the COVID-19 pandemic, this power was critical to the expansion of Canada's narrow but deep basket of universally covered services. The challenges exposed by the pandemic mean that still more federal investment will be required. Yet for traditionalists, the material basis of this power is now constrained: the federal government may possess the constitutional authority to invest, but it lacks the fiscal capacity; some form of belt tightening-even austerity-will be necessary. As debates over public spending intensify, health leaders will need to address these questions. Depending on how they do so, health leaders will either support or detract from a healthy recovery.


Asunto(s)
COVID-19/epidemiología , Gobierno Federal , Neumonía Viral/epidemiología , Cobertura Universal del Seguro de Salud/economía , Canadá/epidemiología , Política de Salud , Humanos , Pandemias , Neumonía Viral/virología , SARS-CoV-2
10.
Clin Genet ; 95(6): 684-692, 2019 06.
Artículo en Inglés | MEDLINE | ID: mdl-30859557

RESUMEN

Preimplantation genetic diagnosis (PGD) allows couples to test for a genetically affected embryo prior to implantation. Patient access to this ethically complex and expensive technology differs markedly across jurisdictions, with differences in private/public insurance coverage and variations in patient inclusion and diagnostic criteria. The objective of the study was to identify trade-offs regarding PGD coverage decisions amongst genetic counselors. To quantify stated preferences for PGD coverage, we conducted a discrete choice experiment with Canadian genetic counselors (GC) considering attributes regarding the scope of testing (PGD indication, risk of the condition and number of cycles covered) and patient inclusion criteria (fertility status and family history). Multinomial logit regression was used to estimate trade-offs amongst attributes using part-worth utilities and importance scores. The completed response rate was 41% with 126 GC completing the survey. Risk of the genetic condition was the most important attribute. Overall, GC were more responsive to the scope of testing criteria including the condition's risk (importance score of 42%) and PGD indication (31%) rather than family history (11%) and fertility status (8%). Based on this study's attributes and levels, condition characteristics are prioritized even above patient characteristics for PGD coverage.


Asunto(s)
Asesoramiento Genético , Diagnóstico Preimplantación , Adulto , Canadá , Costos y Análisis de Costo , Interpretación Estadística de Datos , Embrión de Mamíferos , Femenino , Fertilidad , Fertilización In Vitro , Genotipo , Humanos , Cobertura del Seguro , Anamnesis , Embarazo , Análisis de Regresión , Factores de Riesgo , Encuestas y Cuestionarios
11.
Int J Technol Assess Health Care ; 35(1): 50-55, 2019 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-30732667

RESUMEN

OBJECTIVES: Procurement's important role in healthcare decision making has encouraged criticism and calls for greater collaboration with health technology assessment (HTA), and necessitates detailed analysis of how procurement approaches the decision task. METHODS: We reviewed tender documents that solicit medical technologies for patient care in Canada, focusing on request for proposal (RFP) tenders that assess quality and cost, supplemented by a census of all tender types. We extracted data to assess (i) use of group purchasing organizations (GPOs) as buyers, (ii) evaluation criteria and rubrics, and (iii) contract terms, as indicators of supplier type and market conditions. RESULTS: GPOs were dominant buyers for RFPs (54/97) and all tender types (120/226), and RFPs were the most common tender (92/226), with few price-only tenders (11/226). Evaluation criteria for quality were technical, including clinical or material specifications, as well as vendor experience and qualifications; "total cost" was frequently referenced (83/97), but inconsistently used. The most common (47/97) evaluative rubric was summed scores, or summed scores after excluding those below a mandatory minimum (22/97), with majority weight (64.1 percent, 62.9 percent) assigned to quality criteria. Where specified, expected contract lengths with successful suppliers were high (mean, 3.93 years; average renewal, 2.14 years), and most buyers (37/42) expected to award to a single supplier. CONCLUSIONS: Procurement's evaluative approach is distinctive. While aiming to go beyond price in the acquisition of most medical technologies, it adopts a narrow approach to assessing quality and costs, but also attends to factors little considered by HTA, suggesting opportunities for mutual lesson learning.


Asunto(s)
Propuestas de Licitación/organización & administración , Costos y Análisis de Costo/normas , Toma de Decisiones , Evaluación de la Tecnología Biomédica/organización & administración , Canadá , Propuestas de Licitación/normas , Control de Costos/organización & administración , Adquisición en Grupo/organización & administración , Humanos , Evaluación de la Tecnología Biomédica/economía , Evaluación de la Tecnología Biomédica/normas
12.
Genet Med ; 19(4): 403-411, 2017 04.
Artículo en Inglés | MEDLINE | ID: mdl-27608173

RESUMEN

PURPOSE: Newborn screening (NBS) for cystic fibrosis (CF) can identify carriers, which is considered a benefit that enables reproductive planning. We examined the reproductive impact of carrier result disclosure of NBS for CF. METHODS: We surveyed mothers of carrier infants after NBS (Time 1) and 1 year later (Time 2) to ascertain intended and reported communication of their infants' carrier results to relatives, carrier testing for themselves/other children, and reproductive decisions. A sub-sample of mothers was also interviewed at Time 1 and Time 2. RESULTS: The response rate was 54%. A little more than half (55%) of mothers underwent carrier testing at Time 1; another 40% of those who intended to undergo testing at Time 1 underwent testing at Time 2. Carrier result communication to relatives was high (92%), but a majority of participants did not expect the results to influence family planning (65%). All interviewed mothers valued learning their infants' carrier results. Some underwent carrier testing and then shared results with family. Others did not use the results or used them in unintended ways. CONCLUSION: Although mothers valued learning carrier results from NBS, they reported moderate uptake of carrier testing and limited influence on family planning. Our study highlights the secondary nature of the benefit of disclosing carrier results of NBS.Genet Med 19 4, 403-411.


Asunto(s)
Fibrosis Quística/diagnóstico , Tamización de Portadores Genéticos/métodos , Madres/psicología , Tamizaje Neonatal/métodos , Reproducción , Fibrosis Quística/genética , Revelación , Femenino , Encuestas Epidemiológicas , Humanos , Lactante , Recién Nacido , Estudios Longitudinales , Masculino , Tamizaje Neonatal/psicología , Estudios Prospectivos
13.
J Pediatr ; 184: 165-171.e1, 2017 05.
Artículo en Inglés | MEDLINE | ID: mdl-28279431

RESUMEN

OBJECTIVE: To explore the psychosocial implications of diagnostic uncertainty that result from inconclusive results generated by newborn bloodspot screening (NBS) for cystic fibrosis (CF). STUDY DESIGN: Using a mixed methods prospective cohort study of children who received NBS for CF, we compared psychosocial outcomes of parents whose children who received persistently inconclusive results with those whose children received true positive or screen-negative results. RESULTS: Mothers of infants who received inconclusive results (n = 17), diagnoses of CF (n = 15), and screen-negative results (n = 411) were surveyed; 23 parent interviews were completed. Compared with mothers of infants with true positive/screen-negative results, mothers of infants with inconclusive results reported greater perceived uncertainty (P < .006) but no differences in anxiety or vulnerability (P > .05). Qualitatively, parents valued being connected to experts but struggled with the meaning of an uncertain diagnosis, worried about their infant's health-related vulnerability, and had mixed views about surveillance. CONCLUSION: Inconclusive CF NBS results were not associated with anxiety or vulnerability but led to health-related uncertainty and qualitative concerns. Findings should be considered alongside efforts to optimize protocols for CF screening and surveillance. Educational and psychosocial supports are warranted for these families.


Asunto(s)
Fibrosis Quística/diagnóstico , Tamizaje Neonatal/psicología , Adulto , Ansiedad/etiología , Femenino , Humanos , Recién Nacido , Masculino , Persona de Mediana Edad , Padres/psicología , Estudios Prospectivos , Incertidumbre , Adulto Joven
14.
Pediatr Diabetes ; 18(1): 33-44, 2017 02.
Artículo en Inglés | MEDLINE | ID: mdl-26748950

RESUMEN

OBJECTIVE: To describe insulin pump use by youth since introduction of universal funding in Ontario, Canada and to explore the relationship between pump use and pediatric diabetes center characteristics and the relationship between discontinuation and center and patient characteristics. RESEARCH DESIGN AND METHODS: Observational, population-based cohort study of youth with type 1 diabetes (<19 yr) who received pump funding from 2006 to 2013 (n = 3700). We linked 2012 survey data from 33 pediatric diabetes centers to health administrative databases. We tested the relationship between center-level pump uptake and center characteristics (center type, physician model, and availability of 24-h support) using an adjusted negative binomial model; we studied center- and patient-level factors (socioeconomic status and baseline glycemic control) associated with discontinuation using a Cox proportional hazards model with generalized estimating equations. RESULTS: Pump users were more likely to be in the highest income quintile than non-pump users (29.6 vs. 19.1%, p < 0.0001). In 2012, mean percent pump use was 38.0% with variability across centers. There was no association between uptake and center characteristics. Discontinuation was low (0.42/100 person-yr) and was associated with being followed at a small community center [hazard ratio (HR): 2.24 (1.05-4.76)] and being more deprived [HR: 2.36 (1.14-1.48)]. Older age was associated with a lower rate of discontinuation [HR: 0.31 (0.14-0.66)]. CONCLUSIONS: Rates of pump use have increased since 2006 and discontinuation is rare. Large variation in uptake across centers was not explained by the factors we examined but may reflect variation in patient populations or practice patterns, and should be further explored.


Asunto(s)
Diabetes Mellitus Tipo 1/tratamiento farmacológico , Diabetes Mellitus Tipo 1/epidemiología , Sistemas de Infusión de Insulina , Insulina/administración & dosificación , Privación de Tratamiento/estadística & datos numéricos , Adolescente , Niño , Preescolar , Estudios de Cohortes , Diabetes Mellitus Tipo 1/sangre , Femenino , Humanos , Sistemas de Infusión de Insulina/estadística & datos numéricos , Masculino , Ontario/epidemiología , Clase Social
15.
Health Res Policy Syst ; 15(1): 31, 2017 Apr 17.
Artículo en Inglés | MEDLINE | ID: mdl-28412937

RESUMEN

BACKGROUND: With massive investment in health-related research, above and beyond investments in the management and delivery of healthcare and public health services, there has been increasing focus on the impact of health research to explore and explain the consequences of these investments and inform strategic planning. Relevance is reflected by increased attention to the usability and impact of health research, with research funders increasingly engaging in relevance assessment as an input to decision processes. Yet, it is unclear whether relevance is a synonym for or predictor of impact, a necessary condition or stage in achieving it, or a distinct aim of the research enterprise. The main aim of this paper is to improve our understanding of research relevance, with specific objectives to (1) unpack research relevance from both theoretical and practical perspectives, and (2) outline key considerations for its assessment. APPROACH: Our approach involved the scholarly strategy of review and reflection. We prepared a draft paper based on an exploratory review of literature from various fields, and gained from detailed and insightful analysis and critique at a roundtable discussion with a group of key health research stakeholders. We also solicited review and feedback from a small sample of expert reviewers. CONCLUSIONS: Research relevance seems increasingly important in justifying research investments and guiding strategic research planning. However, consideration of relevance has been largely tacit in the health research community, often depending on unexplained interpretations of value, fit and potential for impact. While research relevance seems a necessary condition for impact - a process or component of efforts to make rigorous research usable - ultimately, relevance stands apart from research impact. Careful and explicit consideration of research relevance is vital to gauge the overall value and impact of a wide range of individual and collective research efforts and investments. To improve understanding, this paper outlines four key considerations, including how research relevance assessments (1) orientate to, capture and compare research versus non-research sources, (2) consider both instrumental versus non-instrumental uses of research, (3) accommodate dynamic temporal-shifting perspectives on research, and (4) align with an intersubjective understanding of relevance.


Asunto(s)
Investigación Biomédica/tendencias , Necesidades y Demandas de Servicios de Salud , Investigación sobre Servicios de Salud/tendencias , Predicción , Humanos
16.
Healthc Q ; 19(4): 6-9, 2017.
Artículo en Inglés | MEDLINE | ID: mdl-28130944

RESUMEN

We evaluated the universal funding program for pediatric insulin pumps in Ontario by examining the dynamics underlying patterns of pump use and adverse events using population-based health administrative data available at the Institute for Clinical Evaluative Sciences (ICES), supplemented by other data. We found that (1) pump use has increased steadily since 2006 with variation across centres and disparity in use by socioeconomic status; (2) pump discontinuation is uncommon; (3) physicians value pump therapy in numerous ways that provide important insights into patterns of uptake; and (4) the safety profile of pump therapy is, in general, very good; however, individuals of lower socioeconomic status are at an increased risk of acute diabetes complications, most frequently diabetic ketoacidosis. This comprehensive mixed-methods evaluation reveals the need to understand and intervene to reduce social disparities in the use and adverse outcomes of technologies used for diabetes management.


Asunto(s)
Diabetes Mellitus Tipo 1/tratamiento farmacológico , Sistemas de Infusión de Insulina/efectos adversos , Sistemas de Infusión de Insulina/economía , Adolescente , Niño , Preescolar , Diabetes Mellitus Tipo 1/complicaciones , Cetoacidosis Diabética/epidemiología , Disparidades en Atención de Salud , Humanos , Insulina/administración & dosificación , Sistemas de Infusión de Insulina/estadística & datos numéricos , Ontario
17.
PLoS Biol ; 11(11): e1001699, 2013 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-24223516

RESUMEN

The cost of whole genome sequencing is dropping rapidly. There has been a great deal of enthusiasm about the potential for this technological advance to transform clinical care. Given the interest and significant investment in genomics, this seems an ideal time to consider what the evidence tells us about potential benefits and harms, particularly in the context of health care policy. The scale and pace of adoption of this powerful new technology should be driven by clinical need, clinical evidence, and a commitment to put patients at the centre of health care policy.


Asunto(s)
Genómica/economía , Política de Salud , Secuenciación de Nucleótidos de Alto Rendimiento/economía , Análisis de Secuencia de ADN/economía , Genoma Humano , Genómica/legislación & jurisprudencia , Humanos , Opinión Pública , Estados Unidos
18.
J Inherit Metab Dis ; 39(1): 139-47, 2016 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-26209272

RESUMEN

BACKGROUND: Patient-centered health care for children with inborn errors of metabolism (IEM) and their families is important and requires an understanding of patient experiences, needs, and priorities. IEM-specific patient groups have emerged as important voices within these rare disease communities and are uniquely positioned to contribute to this understanding. We conducted qualitative interviews with IEM patient group representatives to increase understanding of patient and family experiences, needs, and priorities and inform patient-centered research and care. METHODS: We developed a sampling frame of patient groups representing IEM disease communities from Canada, the United States, and United Kingdom. With consent, we interviewed participants to explore their views on experiences, needs, and outcomes that are most important to children with IEM and their families. We analyzed the data using a qualitative descriptive approach to identify key themes and sub-themes. RESULTS: We interviewed 18 organizational representatives between February 28 and September 17, 2014, representing 16 IEMs and/or disease categories. Twelve participants voluntarily self-identified as parents and/or were themselves patients. Three key themes emerged from the coded data: managing the uncertainty associated with raising and caring for a child with a rare disease; challenges associated with the affected child's life transitions, and; the collective struggle for improved outcomes and interventions that rare disease communities navigate. CONCLUSION: Health care providers can support children with IEM and their families by acknowledging and reducing uncertainty, supporting families through children's life transitions, and contributing to rare disease communities' progress toward improved interventions, experiences, and outcomes.


Asunto(s)
Familia/psicología , Errores Innatos del Metabolismo/psicología , Canadá , Niño , Preescolar , Femenino , Humanos , Masculino , Padres/psicología , Atención Dirigida al Paciente , Investigación Cualitativa , Reino Unido , Estados Unidos
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