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2.
Genet Med ; 2021 Jul 19.
Artigo em Inglês | MEDLINE | ID: mdl-34282302

RESUMO

PURPOSE: Social media may be particularly valuable in research in rare genetic diseases because of the low numbers of patients and the rare disease community's robust online presence. The goal of this systematic review was to understand how social media is currently used in rare disease research and the characteristics of the participants in these studies. METHODS: We conducted a systematic review of six databases to identify studies published in English between January 2004 and November 2020, of which 120 met inclusion criteria. RESULTS: Most studies were observational (n = 114, 95.0%) and cross-sectional (n = 107, 89.2%), and more than half (n = 69, 57.5%) utilized only surveys. Only 101 rare diseases were included across all studies. Participant demographics, when reported, were predominantly female (70.1% ± 22.5%) and white (85.0% ± 11.0%) adult patients and caregivers. CONCLUSION: Despite its potential benefits in rare disease research, the use of social media is still methodologically limited and the participants reached may not be representative of the rare disease population by gender, race, age, or rare disease type. As scholars explore using social media for rare disease research, careful attention should be paid to representativeness when studying this diverse patient community.

3.
J Med Internet Res ; 23(6): e26391, 2021 06 22.
Artigo em Inglês | MEDLINE | ID: mdl-34156338

RESUMO

BACKGROUND: Considerable effort has been devoted to the development of artificial intelligence, including machine learning-based predictive analytics (MLPA) for use in health care settings. The growth of MLPA could be fueled by payment reforms that hold health care organizations responsible for providing high-quality, cost-effective care. Policy analysts, ethicists, and computer scientists have identified unique ethical and regulatory challenges from the use of MLPA in health care. However, little is known about the types of MLPA health care products available on the market today or their stated goals. OBJECTIVE: This study aims to better characterize available MLPA health care products, identifying and characterizing claims about products recently or currently in use in US health care settings that are marketed as tools to improve health care efficiency by improving quality of care while reducing costs. METHODS: We conducted systematic database searches of relevant business news and academic research to identify MLPA products for health care efficiency meeting our inclusion and exclusion criteria. We used content analysis to generate MLPA product categories and characterize the organizations marketing the products. RESULTS: We identified 106 products and characterized them based on publicly available information in terms of the types of predictions made and the size, type, and clinical training of the leadership of the companies marketing them. We identified 5 categories of predictions made by MLPA products based on publicly available product marketing materials: disease onset and progression, treatment, cost and utilization, admissions and readmissions, and decompensation and adverse events. CONCLUSIONS: Our findings provide a foundational reference to inform the analysis of specific ethical and regulatory challenges arising from the use of MLPA to improve health care efficiency.


Assuntos
Inteligência Artificial , Atenção à Saúde , Humanos , Aprendizado de Máquina , Qualidade da Assistência à Saúde
4.
J Genet Couns ; 2021 Jun 06.
Artigo em Inglês | MEDLINE | ID: mdl-34096130

RESUMO

Parents of children with undiagnosed conditions struggle to obtain information about how to treat and support their children. It can be particularly challenging to find communities and other parents who share their experiences and can provide emotional and informational support. This study sought to characterize how parents use social media, both throughout the diagnostic odyssey and post-diagnosis, to meet their informational, social, and emotional support needs. We conducted qualitative semi-structured interviews with 14 parents from the Stanford site of the Undiagnosed Diseases Network (UDN), including five whose children had received a diagnosis through study participation. Interview recordings were analyzed using inductive, team-based coding and thematic analysis based in grounded theory using Dedoose qualitative analysis software. Through this process, we identified four key themes related to social media use. First, parents struggled to find the "right" community, often seeking out groups of similar patients based on symptoms or similar conditions. Second, though they found much valuable information through social media about caring for their child, they also struggled to interpret the relevance of the information to their own child's condition. Third, the social support and access to other patients' and families' lived experiences were described as both highly valued and emotionally challenging, particularly in the case of poor outcomes for similar families. Finally, parents expressed the need to balance concerns about their child's privacy with the value of transparency and data sharing for diagnosis. Our results suggest that the needs and experiences of undiagnosed patients and families differ from those with diagnosed diseases and highlight the need for support in best utilizing social media resources at different stages of the diagnostic odyssey.

5.
JMIR Hum Factors ; 8(2): e26043, 2021 Jun 09.
Artigo em Inglês | MEDLINE | ID: mdl-33914689

RESUMO

BACKGROUND: As COVID-19 poses different levels of threat to people of different ages, health communication regarding prevention measures such as social distancing and isolation may be strengthened by understanding the unique experiences of various age groups. OBJECTIVE: The aim of this study was to examine how people of different ages (1) experienced the impact of the COVID-19 pandemic and (2) their respective rates and reasons for compliance or noncompliance with social distancing and isolation health guidance. METHODS: We fielded a survey on social media early in the pandemic to examine the emotional impact of COVID-19 and individuals' rates and reasons for noncompliance with public health guidance, using computational and content analytic methods of linguistic analysis. RESULTS: A total of 17,287 participants were surveyed. The majority (n=13,183, 76.3%) were from the United States. Younger (18-31 years), middle-aged (32-44 years and 45-64 years), and older (≥65 years) individuals significantly varied in how they described the impact of COVID-19 on their lives, including their emotional experience, self-focused attention, and topical concerns. Younger individuals were more emotionally negative and self-focused, while middle-aged people were other-focused and concerned with family. The oldest and most at-risk group was most concerned with health-related terms but were lower in anxiety (use of fewer anxiety-related terms) and higher in the use of emotionally positive terms than the other less at-risk age groups. While all groups discussed topics such as acquiring essential supplies, they differentially experienced the impact of school closures and limited social interactions. We also found relatively high rates of noncompliance with COVID-19 prevention measures, such as social distancing and self-isolation, with younger people being more likely to be noncompliant than older people (P<.001). Among the 43.1% (n=7456) of respondents who did not fully comply with health orders, people differed substantially in the reasons they gave for noncompliance. The most common reason for noncompliance was not being able to afford to miss work (n=4273, 57.3%). While work obligations proved challenging for participants across ages, younger people struggled more to find adequate space to self-isolate and manage their mental and physical health; middle-aged people had more concerns regarding childcare; and older people perceived themselves as being able to take sufficient precautions. CONCLUSIONS: Analysis of natural language can provide insight into rapidly developing public health challenges like the COVID-19 pandemic, uncovering individual differences in emotional experiences and health-related behaviors. In this case, our analyses revealed significant differences between different age groups in feelings about and responses to public health orders aimed to mitigate the spread of COVID-19. To improve public compliance with health orders as the pandemic continues, health communication strategies could be made more effective by being tailored to these age-related differences.

6.
J Womens Health (Larchmt) ; 30(4): 514-524, 2021 04.
Artigo em Inglês | MEDLINE | ID: mdl-33761277

RESUMO

Objectives: The coronavirus disease 2019 (COVID-19) pandemic has presented extreme challenges for health care workers. This study sought to characterize challenges faced by physician mothers, compare differences in challenges by home and work characteristics, and elicit specific needs and potential solutions. Methods: We conducted a mixed-methods online survey of the Physician Moms Group (PMG) and PMG COVID19 Subgroup on Facebook from April 18th to 29th, 2020. We collected structured data on personal and professional characteristics and qualitative data on home and work concerns. We analyzed qualitative data thematically and used bivariate analyses to evaluate variation in themes by frontline status and children's ages. Results: We included 1,806 participants in analysis and identified 10 key themes. The most frequently identified need/solution was for Community and Government Support (n = 545, 47.1%). When comparing frontline and nonfrontline physicians, those on the frontline more frequently raised concerns about Personal Health and Safety (67.8% vs. 48.4%, p < 0.001), Organizational Communication and Relationships (31.8% vs. 23.8%, p < 0.001), and Family Health and Safety (27.2 vs. 16.6, p < 0.001), while nonfrontline physicians more frequently addressed Patient Care and Safety (56.4% vs. 48.2%, p < 0.001) and Financial/Job Security (33.8% vs. 46.9%, p < 0.001). Participants with an elementary school-aged child more frequently raised concerns about Parenting/Homeschooling (44.0% vs. 31.1%, p < 0.001) and Work/Life Balance (28.4 vs. 13.7, p < 0.001), and participants with a preschool-aged child more frequently addressed Access to Childcare (24.0 vs. 7.7, p < 0.001) and Spouse/Partner Relationships (15.8 vs. 9.5, p < 0.001), when compared to those without children in these age groups. Conclusions: The physician workforce is not homogenous. Health care and government leaders need to understand these diverse challenges in order to meet physicians' professional and family needs during the pandemic.


Assuntos
COVID-19/psicologia , Mães/psicologia , Estresse Ocupacional/psicologia , Pandemias , Médicas/psicologia , Equilíbrio Trabalho-Vida , Adulto , COVID-19/epidemiologia , COVID-19/prevenção & controle , Criança , Pré-Escolar , Feminino , Humanos , Saúde Mental , Pessoa de Meia-Idade , SARS-CoV-2 , Adulto Jovem
9.
Genet Med ; 23(5): 837-844, 2021 05.
Artigo em Inglês | MEDLINE | ID: mdl-33420343

RESUMO

PURPOSE: Patients with rare and undiagnosed diseases (RUDs) face significant health challenges, which may be exacerbated during the COVID-19 pandemic. The goal of this study was to identify specific impacts of the pandemic on RUD patients, and targets for improving support and health-care access. METHODS: We conducted an online survey of RUD patients and their family members from 21 April to 8 June 2020, recruited from 76 Facebook groups for RUDs. Questions assessed patient characteristics and impacts of the pandemic on RUD diagnosis and management. RESULTS: Respondents (n = 413), including 274 RUD patients and 139 family members, were predominantly female and white, though income varied. Impacts of the pandemic included (1) barriers to accessing essential health care, (2) specific impacts of restrictive COVID-19 visitation policies on ability to advocate in health-care settings, (3) uncertainty and fear regarding COVID-19 risk, (4) exacerbated physical and mental health challenges, (5) magnified impacts of reduced educational and therapeutic services, and (6) unexpected positive changes due to the pandemic. CONCLUSION: There are specific, serious challenges affecting RUD patients and families during the COVID-19 pandemic. There is an urgent need to develop approaches to mitigate these challenges both during and beyond the pandemic.


Assuntos
COVID-19 , Doenças não Diagnosticadas , Feminino , Humanos , Saúde Mental , Pandemias , SARS-CoV-2
11.
J Gen Intern Med ; 35(6): 1684-1692, 2020 06.
Artigo em Inglês | MEDLINE | ID: mdl-32291720

RESUMO

BACKGROUND: Group-based lifestyle change programs based on the Diabetes Prevention Program (DPP) are associated with clinically significant weight loss and decreases in cardiometabolic risk factors. However, these benefits depend on successful real-world implementation. Studies have examined implementation in community settings, but less is known about integration in healthcare systems, and particularly in large, multi-site systems with the potential for extended reach. OBJECTIVE: To examine the barriers and facilitators to successful DPP implementation in a large multi-site healthcare system. DESIGN: Semi-structured interviews, based on the RE-AIM framework, were conducted in person for 30-90 min each. PARTICIPANTS: Past and present DPP lifestyle coaches in the healthcare system identified using purposive sampling. APPROACH: Thematic analysis of qualitative data to identify key factors influencing the success of DPP implementation. An iterative consensus process was used to model the relationships among factors. KEY RESULTS: We conducted 33 interviews across 20 clinic sites serving 12 counties. Participants described six key factors as potential barriers or facilitators to implementation, including (1) Broader Context, including the surrounding physical and sociodemographic context; (2) Institutional Context, including finances, infrastructure, and personnel; (3) Program Provision, including curriculum, administration, cost, goals, and visibility; (4) Recruitment Process, including screening and referrals; (5) Lifestyle Coaches, including their characteristics, behaviors, and morale; and (6) Cohort, including group attrition/retention and interpersonal dynamics. These factors were both highly interconnected in their impact on implementation and widely variable across sites within the healthcare system, as illustrated in our multi-level conceptual framework. CONCLUSIONS: This study identified key factors that could serve as barriers or facilitators in the implementation of DPP in large healthcare systems, from the perspective of lifestyle coaches. With further examination, the conceptual model presented here may be used for planning and managing the implementation of group-based behavioral interventions in these settings.


Assuntos
Diabetes Mellitus Tipo 2 , Estilo de Vida , Atenção à Saúde , Humanos , Pesquisa Qualitativa , Projetos de Pesquisa , Perda de Peso
12.
BMC Health Serv Res ; 19(1): 694, 2019 Oct 15.
Artigo em Inglês | MEDLINE | ID: mdl-31615525

RESUMO

BACKGROUND: Group-based Diabetes Prevention Programs (DPP), aligned with recommendations from the Centers for Disease Control and Prevention, promote clinically significant weight loss and reduce cardio-metabolic risks. Studies have examined implementation of the DPP in community settings, but less is known about its integration in healthcare systems. In 2010, a group-based DPP known as the Group Lifestyle Balance (GLB) was implemented within a large healthcare delivery system in Northern California, across three geographically distinct regional administration divisions of the organization within 12 state counties, with varying underlying socio-demographics. The regional divisions implemented the program independently, allowing for natural variation in its real-world integration. We leveraged this natural experiment to qualitatively assess the implementation of a DPP in this healthcare system and, especially, its fidelity to the original GLB curriculum and potential heterogeneity in implementation across clinics and regional divisions. METHODS: Using purposive sampling, we conducted semi-structured interviews with DPP lifestyle coaches. Data were analyzed using mixed-method techniques, guided by an implementation outcomes framework consisting of eight constructs: acceptability, adoption, appropriateness, cost, feasibility, fidelity, penetration, and sustainability. RESULTS: We conducted 33 interviews at 20 clinics across the three regional administrative divisions. Consistencies in implementation of the program were found across regions in terms of satisfaction with the evidence base (acceptability), referral methods (adoption), eligibility criteria (fidelity), and strategies to increase retention and effectiveness (sustainability). Heterogeneity in implementation across regions were found in all categories, including: the number and frequency of sessions (fidelity); program branding (adoption); lifestyle coach training (adoption), and patient-facing cost (cost). Lifestyle coaches expressed differing attitudes about curriculum content (acceptability) and suitability of educational level (appropriateness). While difficulties with recruitment were common across regions (feasibility), strategies used to address these challenges differed (sustainability). CONCLUSIONS: Variation exists in the implementation of the DPP within a large multi-site healthcare system, revealing a dynamic and important tension between retaining fidelity to the original program and tailoring the program to meet the local needs. Moreover, certain challenges across sites may represent opportunities for considering alternative implementation to anticipate these barriers. Further research is needed to explore how differences in implementation domains impact program effectiveness.


Assuntos
Diabetes Mellitus Tipo 2/prevenção & controle , Promoção da Saúde/métodos , California , Aconselhamento , Atenção à Saúde/organização & administração , Feminino , Educação em Saúde/métodos , Pessoal de Saúde , Estilo de Vida Saudável , Humanos , Masculino , Pessoa de Meia-Idade , Educação de Pacientes como Assunto/métodos , Avaliação de Programas e Projetos de Saúde/métodos , Projetos de Pesquisa , Perda de Peso
13.
BMJ Open ; 9(8): e030123, 2019 08 27.
Artigo em Inglês | MEDLINE | ID: mdl-31462482

RESUMO

The objective of this commentary is to develop a framework for assessing the rigour of qualitative approaches that identifies and distinguishes between the diverse objectives of qualitative health research, guided by a narrative review of the published literature on qualitative guidelines and standards from peer-reviewed journals and national funding organisations that support health services research, patient-centered outcomes research and other applied health research fields. In this framework, we identify and distinguish three objectives of qualitative studies in applied health research: exploratory, descriptive and comparative. For each objective, we propose methodological standards that may be used to assess and improve rigour across all study phases-from design to reporting. Similar to hierarchies of quality of evidence within quantitative studies, we argue that standards for qualitative rigour differ, appropriately, for studies with different objectives and should be evaluated as such. Distinguishing between different objectives of qualitative health research improves the ability to appreciate variation in qualitative studies and to develop appropriate evaluations of the rigour and success of qualitative studies in meeting their stated objectives. Researchers, funders and journal editors should consider how further developing and adopting the framework for assessing qualitative rigour outlined here may advance the rigour and potential impact of this important mode of inquiry.


Assuntos
Pesquisa sobre Serviços de Saúde/métodos , Pesquisa Qualitativa , Projetos de Pesquisa , Humanos , Avaliação de Resultados da Assistência ao Paciente
14.
J Allergy Clin Immunol ; 143(6): 2271-2278, 2019 06.
Artigo em Inglês | MEDLINE | ID: mdl-31178019

RESUMO

BACKGROUND: Caregivers of children with primary immunodeficiency disorders (PIDs) experience significant psychological distress during their child's hematopoietic cell transplantation (HCT) process. OBJECTIVES: This study aims to understand caregiver challenges and identify areas for health care system-level improvements to enhance caregiver well-being. METHODS: In this mixed-methods study caregivers of children with PIDs were contacted in August to November 2017 through online and electronic mailing lists of rare disease consortiums and foundations. Caregivers were invited to participate in an online survey assessing sociodemographic variables, the child's medical characteristics, psychosocial support use, and the World Health Organization-5 Well-Being Index. Open-ended questions about health care system improvements were included. Descriptive statistics and linear multivariate regression analyses were conducted. A modified content analysis method was used to code responses and identify emergent themes. RESULTS: Among the 80 caregiver respondents, caregivers had a median age of 34 years (range, 23-62 years) and were predominantly female, white, and married with male children given a diagnosis of severe combined immune deficiency. In the adjusted regression model lower caregiver well-being was significantly associated with lower household income and medical complications. Challenges during HCT include maintaining relationships with partners and the child's healthy sibling or siblings, managing self-care, and coping with feelings of uncertainty. Caregivers suggested several organizational-level solutions to enhance psychosocial support, including respite services, online connections to other PID caregivers, and bedside mental health services. CONCLUSIONS: Certain high-risk subpopulations of caregivers might need more targeted psychosocial support to reduce the long-term effect of the HCT experience on their well-being. Caregivers suggested several organizational-level solutions for provision of this support.


Assuntos
Cuidadores/estatística & dados numéricos , Transplante de Células-Tronco Hematopoéticas , Doenças da Imunodeficiência Primária/epidemiologia , Sistemas de Apoio Psicossocial , Estresse Psicológico/epidemiologia , Adulto , Criança , Atenção à Saúde , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Doenças da Imunodeficiência Primária/terapia , Melhoria de Qualidade , Qualidade de Vida , Fatores Socioeconômicos , Inquéritos e Questionários , Adulto Jovem
15.
BMJ ; 363: k4926, 2018 12 12.
Artigo em Inglês | MEDLINE | ID: mdl-30541926

RESUMO

OBJECTIVES: To report woman physicians' experiences, in their own words, of discrimination based on their role as a mother. DESIGN: Qualitative analysis of physician mothers' free-text responses to the open question: "We want to hear your story and experience. Please share" included in questions about workplace discrimination. Three analysts iteratively formulated a structured codebook, then applied codes after inter-coder reliability scores indicated high concordance. The relationships among themes and sub-themes were organized into a conceptual model illustrated by exemplary quotes. PARTICIPANTS: Respondents to an anonymous, voluntary online survey about the health and wellbeing of physician mothers posted on a Facebook group, the Physician Moms Group, an online community of US physicians who identify as mothers. RESULTS: We analyzed 947 free-text responses. Participants provide diverse and vivid descriptions of experiences of maternal discrimination. Gendered job expectations, financial inequalities (including lower pay than equally qualified colleagues and more unpaid work), limited opportunities for advancement, lack of support during the pregnancy and postpartum period, and challenging work-life balance are some of the key themes identified. In addition, participants' quotes show several potential structural drivers of maternal discrimination and describe the downstream consequences of maternal discrimination on the physician herself, her career, family, and the healthcare system. CONCLUSIONS: These findings provide a view of maternal discrimination directly from the perspective of those who experience it. Women physicians report a range of previously uncharacterized ways in which they experience maternal discrimination. While certain aspects of these experiences are consistent with those reported by women across other professions, there are unique aspects of medical training and the medical profession that perpetuate maternal discrimination.


Assuntos
Mães , Saúde do Trabalhador , Médicas , Preconceito/estatística & dados numéricos , Local de Trabalho , Adulto , Atitude do Pessoal de Saúde , Feminino , Humanos , Satisfação no Emprego , Pessoa de Meia-Idade , Relações Mãe-Filho , Preconceito/psicologia , Pesquisa Qualitativa , Estresse Psicológico , Local de Trabalho/estatística & dados numéricos
16.
Vital Health Stat 2 ; (176): 1-18, 2017 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-29148968

RESUMO

Objective This report examines ways to improve National Ambulatory Medical Care Survey (NAMCS) data on practice and physician characteristics in multispecialty group practices. Methods From February to April 2013, the National Center for Health Statistics (NCHS) conducted a pilot study to observe the collection of the NAMCS physician interview information component in a large multispecialty group practice. Nine physicians were randomly sampled using standard NAMCS recruitment procedures; eight were eligible and agreed to participate. Using standard protocols, three field representatives conducted NAMCS physician induction interviews (PIIs) while trained ethnographers observed and audio recorded the interviews. Transcripts and field notes were analyzed to identify recurrent issues in the data collection process. Results The majority of the NAMCS items appeared to have been easily answered by the physician respondents. Among the items that appeared to be difficult to answer, three themes emerged: (a) physician respondents demonstrated an inconsistent understanding of "location" in responding to questions; (b) lack of familiarity with administrative matters made certain questions difficult for physicians to answer; and (c) certain primary care­oriented questions were not relevant to specialty care providers. Conclusions Some PII survey questions were challenging for physicians in a multispecialty practice setting. Improving the design and administration of NAMCS data collection is part of NCHS' continuous quality improvement process.


Assuntos
Assistência Ambulatorial/estatística & dados numéricos , Coleta de Dados/métodos , Pesquisas sobre Serviços de Saúde/métodos , Consultórios Médicos/estatística & dados numéricos , Adulto , Fatores Etários , Idoso , Antropologia Cultural/métodos , Grupos de Populações Continentais , Feminino , Humanos , Entrevistas como Assunto/métodos , Masculino , Pessoa de Meia-Idade , National Center for Health Statistics, U.S. , Projetos Piloto , Área de Atuação Profissional/estatística & dados numéricos , Projetos de Pesquisa , Fatores Sexuais , Estados Unidos
17.
Med Decis Making ; 37(1): 79-90, 2017 01.
Artigo em Inglês | MEDLINE | ID: mdl-27053528

RESUMO

BACKGROUND: Studies show adjuvant endocrine therapy increases survival and decreases risk of breast cancer recurrence for hormone receptor-positive tumors. Yet studies also suggest that adherence rates among women taking this therapy may be as low as 50% owing largely to adverse side effects. Despite these rates, research on longitudinal patient decision making regarding this therapy is scant. OBJECTIVE: We sought to map the decision-making process for women considering and initiating adjuvant endocrine therapy, paying particular attention to patterns of uncertainty and decisional change over time. METHODS: A longitudinal series of semistructured interviews conducted at a multispecialty health care organization in Northern California with 35 newly diagnosed patients eligible for adjuvant endocrine therapy were analyzed. Analysis led to the identification and indexing of 3 new decision-making constructs-decisional phase, decisional direction, and decisional resolve-which were then organized using a visual matrix and examined for patterns characterizing the decision-making process. RESULTS: Our data reveal that most patients do not make a single, discrete decision to take or not take hormone therapy but rather traverse multiple decisional states, characterized by 1) phase, 2) direction, and 3) strength of resolve. Our analysis tracks these decisional states longitudinally using a grayscale-coded matrix. Our data show that decisional resolve wavers not just when considering therapy, as the existing concept of decisional conflict suggests, but even after initiating it, which may signal future decisions to forgo therapy. CONCLUSIONS: Adjuvant endocrine therapy, like other chronic care decisions, has a longer decision-making process and implementation period. Thus, theoretical, empirical, and clinical approaches should consider further exploring the new concept and measurement of decisional resolve, as it may help to improve subsequent medication adherence.


Assuntos
Neoplasias da Mama/tratamento farmacológico , Tomada de Decisões , Participação do Paciente/psicologia , Incerteza , Quimioterapia Adjuvante , Feminino , Humanos , Entrevistas como Assunto , Estudos Longitudinais , Pessoa de Meia-Idade , Recidiva Local de Neoplasia/prevenção & controle , Fatores Socioeconômicos
18.
Med Decis Making ; 35(8): 987-98, 2015 11.
Artigo em Inglês | MEDLINE | ID: mdl-26314727

RESUMO

BACKGROUND: The benefits of patient decision support interventions (DESIs) have been well documented. However, DESIs remain difficult to incorporate into clinical practice. Relational coordination (RC) has been shown to improve performance and quality of care in health care settings. This study aims to demonstrate how applying RC theory to DESI implementation could elucidate underlying issues limiting widespread uptake. METHODS: Five primary care clinics in Northern California participated in a DESI implementation project. We used a deductive thematic approach guided by behaviors outlined in RC theory to analyze qualitative data collected from ethnographic field notes documenting the implementation process and focus groups with health care professionals. We then systematically compared the qualitative findings with quantitative DESI distribution data. RESULTS: Based on DESI distribution rates, clinics were placed into 3 performance categories: high, middle, and low. Qualitative data illustrated how each clinic's performance related to RC behaviors. Consistent with RC theory, the high-performing clinic exhibited frequent, timely, and accurate communication and positive working relationships. The 3 middle-performing clinics exhibited high-quality communication within physician-staff teams but limited communication regarding DESI implementation across the clinic. The lowest-performing clinic was characterized by contentious relationships and inadequate communication. LIMITATIONS: Limitations of the study include nonrandom selection of clinics and limited geographic diversity. In addition, ethnographic data collected documented only DESI implementation practices and not larger staff interactions contributing to RC. CONCLUSIONS: These findings suggest that a high level of RC within clinical settings may be a key component and facilitator of successful DESI implementation. Future attempts to integrate DESIs into clinical practice should consider incorporating interventions designed to increase positive RC behaviors as a potential means to improve uptake.


Assuntos
Atitude do Pessoal de Saúde , Tomada de Decisões , Técnicas de Apoio para a Decisão , Relações Médico-Paciente , Médicos/psicologia , Antropologia Cultural , California , Grupos Focais , Humanos , Relações Interprofissionais , Atenção Primária à Saúde , Gravação de Videodisco
19.
Qual Health Res ; 25(9): 1251-9, 2015 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-25371380

RESUMO

Rates of contralateral prophylactic mastectomy (CPM) among unilateral breast cancer patients are rapidly increasing; however, there are little data documenting the decision-making process of patients with no known BRCA mutations, who elect this more aggressive treatment. We conducted semistructured interviews with nine newly diagnosed patients who elected CPM over other surgical options. Using grounded theory, we analyzed interview data to identify influential decision-making factors by prevalence and intensity across participants. Decision-making factors included subjective evaluations of risk and benefit, avoidance of future breast cancer surveillance and accompanying worry, and desire to maintain (or improve) breast appearance. Based solely on survival benefit, the decision to undergo CPM might be viewed as unnecessary or even misguided. However, our findings show the importance of psychosocial factors in patients' assessments of risk and benefit, and support the need for additional patient-provider communication regarding these factors.


Assuntos
Neoplasias da Mama/psicologia , Conhecimentos, Atitudes e Prática em Saúde , Mastectomia Profilática/psicologia , Adulto , Neoplasias da Mama/diagnóstico , Neoplasias da Mama/cirurgia , Tomada de Decisões , Feminino , Humanos , Entrevistas como Assunto , Pessoa de Meia-Idade , Relações Médico-Paciente , Medição de Risco , São Francisco , Saúde da Mulher
20.
Health Expect ; 18(6): 2880-91, 2015 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-25263630

RESUMO

BACKGROUND: The last 15 years have witnessed considerable progress in the development of decision support interventions (DESIs). However, fundamental questions about design and format of delivery remain. METHODS: An exploratory, randomized mixed-method crossover study was conducted to compare a DVD- and Web-based DESI. Randomized participants used either the Web or the DVD first, followed by the alternative format. Participants completed a questionnaire to assess decision-specific knowledge at baseline and a questionnaire and structured qualitative interview after viewing each format. Tracking software was used to capture Web utilization. Transcripts were analyzed using integrated inductive and deductive approaches. Quantitative data were analyzed using exploratory bivariate and multivariate analyses. RESULTS: Exploratory knowledge analyses suggest that both formats increased knowledge, with limited evidence that the DVD increased knowledge more than the Web. Format preference varied across participants: 44% preferred the Web, 32% preferred the DVD and 24% preferred 'both'. Patient discussions of preferences for DESI information structure and the importance of a patients' stage of a given decision suggest these characteristics may be important factors underlying variation in utilization, format preferences and knowledge outcomes. CONCLUSIONS: Our results suggest that both DESI formats effectively increase knowledge. Patients' perceptions of these two formats further suggest that there may be no single 'best' format for all patients. These results have important implications for understanding why different DESI formats might be preferable to and more effective for different patients. Further research is needed to explore the relationship between these factors and DESI utilization outcomes across diverse patient populations.


Assuntos
Atitude Frente a Saúde , Técnicas de Apoio para a Decisão , Internet , Gravação em Vídeo , Idoso , Neoplasias Colorretais/diagnóstico , Estudos Cross-Over , Diabetes Mellitus/terapia , Detecção Precoce de Câncer , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Educação de Pacientes como Assunto/métodos , Hiperplasia Prostática/terapia , Inquéritos e Questionários
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