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1.
BMC Health Serv Res ; 24(1): 505, 2024 Apr 24.
Artículo en Inglés | MEDLINE | ID: mdl-38654291

RESUMEN

BACKGROUND: Since 2015, the New York State Office of Mental Health has provided state primary care clinics with outreach, free training and technical assistance, and the opportunity to bill Medicaid for the Collaborative Care Model (CoCM) as part of its Collaborative Care Medicaid Program. This study aims to describe the characteristics of New York State primary care clinics at each step of CoCM implementation, and the barriers and facilitators to CoCM implementation for the New York State Collaborative Care Medicaid Program. METHODS: In this mixed-methods study, clinics were categorized into RE-AIM (Reach, Effectiveness, Adoption, Implementation, and Maintenance) steps. Clinics were sent a survey, which included questions related to payer mix, funding sources, billing codes used, and patient population demographics. Qualitative interviews were conducted with clinic representatives, focusing on barriers or facilitators clinics experienced affecting their progression to the next RE-AIM step. RESULTS: One thousand ninety-nine surveys were sent to primary care clinics across New York State, with 107 (9.7%) completing a survey. Significant differences were observed among the different RE-AIM steps for multiple demographic variables including primary payer, percentage of patients with a diagnose of depression or anxiety, and percent of behavioral health services that are reimbursed, in addition to others. Three main themes regarding barriers and facilitators to implementing CoCM for New York State Medicaid billing emerged from 31 qualitative interviews: (1) Billing requirements, (2) Reimbursement rates, and (3) Buy-in to CoCM. CONCLUSIONS: Survey data align with what we would expect to see demographically in NYS primary care clinics. Qualitative data indicated that CoCM billing requirements/structure and reimbursement rates were perceived as barriers to providing CoCM, particularly with New York State Medicaid, and that buy-in, which included active involvement from organizational leaders and providers that understand the Collaborative Care model were facilitators. Having dedicated staff to manage billing and data reporting is one way clinics minimize barriers, however, there appeared to be a disconnect between what clinics can bill for and the reimbursed amount several clinics are receiving, illustrating the need for stronger billing workflows and continued refinement of billing options across different payers.


Asunto(s)
Medicaid , Atención Primaria de Salud , Humanos , New York , Estados Unidos , Atención Primaria de Salud/organización & administración , Investigación Cualitativa , Masculino , Encuestas y Cuestionarios , Femenino
2.
JAMA Oncol ; 9(11): 1547-1555, 2023 Nov 01.
Artículo en Inglés | MEDLINE | ID: mdl-37707822

RESUMEN

Importance: Requiring personalized genetic counseling may introduce barriers to cancer risk assessment, but it is unknown whether omitting counseling could increase distress. Objective: To assess whether omitting pretest and/or posttest genetic counseling would increase distress during remote testing. Design, Setting, and Participants: Making Genetic Testing Accessible (MAGENTA) was a 4-arm, randomized noninferiority trial testing the effects of individualized pretest and/or posttest genetic counseling on participant distress 3 and 12 months posttest. Participants were recruited via social and traditional media, and enrollment occurred between April 27, 2017, and September 29, 2020. Participants were women aged 30 years or older, English-speaking, US residents, and had access to the internet and a health care professional. Previous cancer genetic testing or counseling was exclusionary. In the family history cohort, participants had a personal or family history of breast or ovarian cancer. In the familial pathogenic variant (PV) cohort, participants reported 1 biological relative with a PV in an actionable cancer susceptibility gene. Data analysis was performed between December 13, 2020, and May 31, 2023. Intervention: Participants completed baseline questionnaires, watched an educational video, and were randomized to 1 of 4 arms: the control arm with pretest and/or posttest genetic counseling, or 1 of 3 study arms without pretest and posttest counseling. Genetic counseling was provided by phone appointments and testing was done using home-delivered saliva kits. Main Outcomes and Measures: The primary outcome was participant distress measured by the Impact of Event Scale 3 months after receiving the results. Secondary outcomes included completion of testing, anxiety, depression, and decisional regret. Results: A total of 3839 women (median age, 44 years [range 22-91 years]), most of whom were non-Hispanic White and college educated, were randomized, 3125 in the family history and 714 in the familial PV cohorts. In the primary analysis in the family history cohort, all experimental arms were noninferior for distress at 3 months. There were no statistically significant differences in anxiety, depression, or decisional regret at 3 months. The highest completion rates were seen in the 2 arms without pretest counseling. Conclusions and Relevance: In the MAGENTA clinical trial, omitting individualized pretest counseling for all participants and posttest counseling for those without PV during remote genetic testing was not inferior with regard to posttest distress, providing an alternative care model for genetic risk assessment. Trial Registration: ClinicalTrials.gov Identifier: NCT02993068.


Asunto(s)
Neoplasias Ováricas , Colorantes de Rosanilina , Humanos , Femenino , Adulto Joven , Adulto , Persona de Mediana Edad , Anciano , Anciano de 80 o más Años , Masculino , Pruebas Genéticas/estadística & datos numéricos , Asesoramiento Genético/métodos , Consejo , Neoplasias Ováricas/genética
3.
JMIR Form Res ; 7: e46341, 2023 Aug 02.
Artículo en Inglés | MEDLINE | ID: mdl-37531188

RESUMEN

BACKGROUND: Maintaining control of asthma symptoms is the cornerstone of asthma treatment guidelines in the United States. However, suboptimal asthma control and asthma exacerbations among young people are common and are associated with many negative outcomes. Interventions to improve asthma control are needed. For such interventions to be successful, it is necessary to understand the types of interventions that are appealing to caregivers of children with different levels of risk of exacerbation. OBJECTIVE: This study aimed to evaluate whether caregivers of children with high (vs low) risk of asthma exacerbation show different levels of interest in and preferences for potential intervention programs and delivery methods. METHODS: We contracted with Ipsos to administer a web-based survey to caregivers of children with asthma who were residing in the United States. Caregivers (N=394) reported their interest (1=not at all; 3=a lot) in 9 possible intervention programs and 8 possible intervention delivery methods. Caregivers also indicated their preferences by selecting the 3 intervention programs and 3 delivery methods that "most" interested them. Finally, caregivers completed 2 open-ended questions asking what other resources might be useful for managing their children's asthma. We classified children as having a high risk of exacerbation if they had an exacerbation in the past 3 months (n=116) and a low risk of exacerbation if otherwise (n=278). RESULTS: Caregivers reported higher levels of interest in all intervention programs and delivery methods if they cared for a child with a high risk rather than a low risk of exacerbation. However, regardless of the child's risk status, caregivers expressed the highest levels of interest in programs to increase their child's self-management skills, to help pay for asthma care, and to work with the school to manage asthma. Caregivers expressed the highest levels of interest in delivery methods that maintained personal control over accessing information (websites, videos, printed materials, and smartphone apps). Caregivers' preferences were consistent with their interests; programs and delivery methods that were rated as high in interest were also selected as one of the 3 that "most" interested them. Although most caregivers did not provide additional suggestions for the open-ended questions, a few caregivers suggested intervention programs and delivery methods that we had not included (eg, education about avoiding triggers and medication reminders). CONCLUSIONS: Similar interests and preferences among caregivers of children with high and low risk of exacerbation suggest a broad need for support in managing childhood asthma. Providers could help caregivers by directing them toward resources that make asthma care more affordable and by helping their children with asthma self-management. Interventions that accommodate caregivers' concerns about having personal control over access to asthma information are likely to be more successful than interventions that do not.

4.
Contemp Clin Trials ; 132: 107309, 2023 09.
Artículo en Inglés | MEDLINE | ID: mdl-37516165

RESUMEN

BACKGROUND: A central challenge to precision medicine research efforts is the return of genetic research results in a manner that is effective, ethical, and efficient. Formal tests of alternate modalities are needed, particularly for racially marginalized populations that have historically been underserved in this context. METHODS: We are conducting a randomized controlled trial (RCT) to test scalable modalities for results return and to examine the clinical utility of returning genetic research results to a research cohort of Black women. The primary aim is to compare the efficacy of two communication modalities for results return: 1) a conventional modality that entails telephone disclosure by a Board-certified genetic counselor, and 2) an online self-guided modality that entails results return directly to participants, with optional genetic counselor follow-up via telephone. The trial is being conducted among participants in the Black Women's Health Study (BWHS), where targeted sequencing of 4000 participants was previously completed. RESULTS: Several ethical, legal, and social implications (ELSI) and challenges presented, which necessitated substantial revision of the original study protocol. Challenges included chain of custody, re-testing of research results in a CLIA lab, exclusion of VUS results, and digital literacy. Bioethical principles of autonomy, justice, non-maleficence, and beneficence were considered in the design of the study protocol. CONCLUSION: This study is uniquely situated to provide critical evidence on the effectiveness of alternative models for genetic results return and provide further insight into the factors influencing access and uptake of genetic information among U.S. Black women. CLINICALTRIALS: gov: NCT04407611.


Asunto(s)
Pruebas Genéticas , Neoplasias , Femenino , Humanos , Neoplasias/genética , Revelación , Comunicación , Investigación Genética
5.
Psychiatr Serv ; 74(11): 1192-1195, 2023 Nov 01.
Artículo en Inglés | MEDLINE | ID: mdl-36935624

RESUMEN

The collaborative care model (CoCM) is an effective strategy to manage common mental disorders in primary care. Despite the growing adoption of newer CoCM billing codes to support these programs, few studies have investigated the use of these codes. This column evaluated the implementation of CoCM billing codes by comparing clinics using different billing strategies and assessed the impact of CoCM code implementation on revenue and on clinical and process-of-care outcomes. Qualitative data were obtained to understand provider perspectives. The results indicate that CoCM billing code implementation is operationally feasible, does not adversely affect the delivery of patient care or revenue, and is acceptable to providers.

6.
Genet Med ; 25(5): 100802, 2023 05.
Artículo en Inglés | MEDLINE | ID: mdl-36906849

RESUMEN

PURPOSE: National efforts have prioritized the identification of effective methods for increasing case ascertainment and delivery of evidence-based health care for individuals at elevated risk for hereditary cancers. METHODS: This study examined the uptake of genetic counseling and testing following the use of a digital cancer genetic risk assessment program implemented at 27 health care sites in 10 states using 1 of 4 clinical workflows: (1) traditional referral, (2) point-of-care scheduling, (3) point-of-care counseling/telegenetics, and (4) point-of-care testing. RESULTS: In 2019, 102,542 patients were screened and 33,113 (32%) were identified as at high risk and meeting National Comprehensive Cancer Network genetic testing criteria for hereditary breast and ovarian cancer, Lynch syndrome, or both. Among those identified at high risk, 5147 (16%) proceeded with genetic testing. Genetic counseling uptake was 11% among the sites with workflows that included seeing a genetic counselor before testing, with 88% of patients proceeding with genetic testing after counseling. Uptake of genetic testing across sites varied significantly by clinical workflow (6% referral, 10% point-of-care scheduling, 14% point-of-care counseling/telegenetics, and 35% point-of-care testing, P < .0001). CONCLUSION: Study findings highlight the potential heterogeneity of effectiveness attributable to different care delivery approaches for implementing digital hereditary cancer risk screening programs.


Asunto(s)
Neoplasias Colorrectales Hereditarias sin Poliposis , Síndromes Neoplásicos Hereditarios , Femenino , Humanos , Flujo de Trabajo , Pruebas Genéticas , Síndromes Neoplásicos Hereditarios/diagnóstico , Síndromes Neoplásicos Hereditarios/genética , Asesoramiento Genético , Neoplasias Colorrectales Hereditarias sin Poliposis/diagnóstico , Neoplasias Colorrectales Hereditarias sin Poliposis/genética , Predisposición Genética a la Enfermedad
7.
Health Serv Res ; 58(4): 792-799, 2023 08.
Artículo en Inglés | MEDLINE | ID: mdl-36632778

RESUMEN

OBJECTIVE: To ascertain the impact of Affordable Care Act (ACA) state Medicaid expansion on human papillomavirus (HPV) vaccination among both adolescent and young adult US women. DATA SOURCES: We used state-level data on ACA Medicaid expansion and individual-level data on US women aged 15-25 years living at or below 138% of the Federal Poverty Level (FPL) from the 2011-2017 waves of the National Survey of Family Growth (N = 2408). STUDY DESIGN: We conducted a quasi-experimental study examining the association between ACA state Medicaid expansion and HPV vaccination initiation among eligible adolescent and young adult US women. METHODS: We used linear probability modeling within a difference-in-differences approach, adjusting for individual- and state-level covariates. PRINCIPAL FINDINGS: Adjusting for individual- and state-level covariates, we found a negative association between Medicaid expansion and HPV vaccination among US women aged 15-25 years living in low-income households in the first year post-expansion (coefficient: -15.9 percentage points; 95% confidence interval [CI]: -30.1, -1.6 points). In contrast, we observed a positive association in the third year post-expansion (coefficient: 20.5 percentage points; 95% confidence interval [CI]: -1.8, 42.9 points). CONCLUSIONS: Medicaid expansion may have increased HPV vaccination among adolescent and young adult US women over time. Additional research is needed to identify the mechanisms and differential effects of Medicaid expansion on HPV vaccination among diverse subgroups of US women.


Asunto(s)
Infecciones por Papillomavirus , Vacunas contra Papillomavirus , Estados Unidos , Humanos , Femenino , Adulto Joven , Adolescente , Medicaid , Patient Protection and Affordable Care Act , Infecciones por Papillomavirus/prevención & control , Virus del Papiloma Humano , Accesibilidad a los Servicios de Salud , Cobertura del Seguro , Vacunación
8.
JCO Precis Oncol ; 7: e2200104, 2023 01.
Artículo en Inglés | MEDLINE | ID: mdl-36623239

RESUMEN

PURPOSE: Germline mutations in DNA repair genes are present in approximately 10% of men with metastatic prostate cancer (mPC), and guidelines recommend genetic germline testing. Notable barriers exist, including access to genetic counseling, insurance coverage, and out-of-pocket costs. The GENTleMEN study was designed to determine the feasibility of an Internet-based, patient-driven germline genetic testing approach for men with mPC. PATIENTS AND METHODS: In this prospective cohort study, men with mPC provided informed consent via an Internet-based platform and completed a questionnaire including demographics and family cancer history. Supporting medical data were also collected. Genetic testing was performed using the Color Genomics 30-gene targeted panel of cancer predisposition genes on a mailed saliva sample. Men whose test results identified a germline pathogenic or likely pathogenic variant received results by phone or telehealth genetic counseling; other participants received results by email with an option for phone-based or telehealth genetic counseling. RESULTS: As of August 18, 2021, 816 eligible men were consented, of whom 68% (551) completed genetic testing, and 8.7% (48 of 551) were found to carry a pathogenic or likely pathogenic variant in a germline DNA repair gene: CHEK2 (17), BRCA2 (15), ATM (6), NBN1 (3), BRCA1 (2), PALB2 (2), PMS2 (2), and MSH6 (1). Participants were more likely to complete the testing process if they were non-Hispanic White, married, highly educated, or from a higher-income bracket. CONCLUSION: Here, we show the feasibility of delivering germline (inherited) genetic testing by a voluntary, patient-driven, Internet-based platform to men with mPC. Preliminary results show rates of germline DNA repair mutations, consistent with other cohorts. Although feasible for some, reduced steps for participation, more dedicated diverse outreach and participant support, and identification and addressing of additional barriers is needed to ensure equitable access and optimization.


Asunto(s)
Pruebas Genéticas , Neoplasias de la Próstata , Humanos , Masculino , Reparación del ADN/genética , Células Germinativas/patología , Estudios Prospectivos , Neoplasias de la Próstata/diagnóstico , Neoplasias de la Próstata/genética , Neoplasias de la Próstata/patología , Metástasis de la Neoplasia
9.
Front Digit Health ; 4: 961128, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-36386046

RESUMEN

Individual, provider, clinic, and societal level barriers have been shown to undermine the potential impact of genetic testing. The current approach in the primary care setting places an exorbitant burden on both providers and patients. Current literature provides insight into how to address barriers across multiple levels (patient, provider, clinic, system) and at multiple stages in the testing process (identification, referral, counseling, and testing) but interventions have had limited success. After outlining the current approach to genetic testing in the primary care setting, including the barriers that prevent genetic testing uptake and the methods proposed to address these issues, we recommend integrating genetic testing into routine medical care through population-based testing. Success in efforts to increase the uptake of genetic testing will not occur without significant changes to the way genetic services are delivered. These changes will not be instantaneous but are critical in moving this field forward to realize the potential for cancer risk genetic assessment to reduce cancer burden.

10.
JMIR Form Res ; 6(10): e34055, 2022 Oct 17.
Artículo en Inglés | MEDLINE | ID: mdl-36251350

RESUMEN

BACKGROUND: Genetic testing uptake is low, despite the well-established connection between pathogenic variants in certain cancer-linked susceptibility genes and ovarian cancer risk. Given that most major insurers cover genetic testing for those with a family history suggestive of hereditary cancer, the issue may lie in access to genetic testing. Remotely accessible web-based communication systems may improve awareness, and uptake, of genetic testing services. OBJECTIVE: This study aims to present the development and formative evaluation of the multistep web-based communication system required to support the implementation of, and access to, genetic testing. METHODS: While designing the multistep web-based communication system, we considered various barriers and facilitators to genetic testing, guided by dimensions of accessibility. In addition to conducting usability testing, we performed ongoing assessments focusing on the function of the web-based system and participant response rates, with the goal of continuing to make modifications to the web-based communication system as it is in use. RESULTS: The combined approach of usability testing and expert user experience consultation resulted in several modifications to the multistep web-based communication system, including changes that related to imagery and content, web accessibility, and general organization of the web-based system. All recommendations were made with the goal of improving the overall accessibility of the web-based communication system. CONCLUSIONS: A multistep web-based communication system appears to be an effective way to address many potential barriers to access, which may otherwise make genetic testing difficult for at-risk individuals to participate in. Importantly, some dimensions of access were easy to assess before study recruitment, but other aspects of the communication system required ongoing assessment during the implementation process of the Making Genetic Testing Accessible study.

11.
JMIR Form Res ; 6(9): e35035, 2022 Sep 26.
Artículo en Inglés | MEDLINE | ID: mdl-36155347

RESUMEN

BACKGROUND: Strong participant recruitment practices are critical to public health research but are difficult to achieve. Traditional recruitment practices are often time consuming, costly, and fail to adequately target difficult-to-reach populations. Social media platforms such as Facebook are well-positioned to address this area of need, enabling researchers to leverage existing social networks and deliver targeted information. The MAGENTA (Making Genetic Testing Accessible) study aimed to improve the availability of genetic testing for hereditary cancer susceptibility in at-risk individuals through the use of a web-based communication system along with social media advertisements to improve reach. OBJECTIVE: This paper is aimed to evaluate the effectiveness of Facebook as an outreach tool for targeting women aged ≥30 years for recruitment in the MAGENTA study. METHODS: We designed and implemented paid and unpaid social media posts with ongoing assessment as a primary means of research participant recruitment in collaboration with patient advocates. Facebook analytics were used to assess the effectiveness of paid and unpaid outreach efforts. RESULTS: Over the course of the reported recruitment period, Facebook materials had a reach of 407,769 people and 57,248 (14.04%) instances of engagement, indicating that approximately 14.04% of people who saw information about the study on Facebook engaged with the content. Paid advertisements had a total reach of 373,682. Among those reached, just <15% (54,117/373,682, 14.48%) engaged with the page content. Unpaid posts published on the MAGENTA Facebook page resulted in a total of 34,087 reach and 3131 instances of engagement, indicating that around 9.19% (3131/34,087) of people who saw unpaid posts engaged. Women aged ≥65 years reported the best response rate, with approximately 43.95% (15,124/34,410) of reaches translating to engagement. Among the participants who completed the eligibility questionnaire, 27.44% (3837/13,983) had heard about the study through social media or another webpage. CONCLUSIONS: Facebook is a useful way of enhancing clinical trial recruitment of women aged ≥30 years who have a potentially increased risk for ovarian cancer by promoting news stories over social media, collaborating with patient advocacy groups, and running paid and unpaid campaigns. TRIAL REGISTRATION: ClinicalTrials.gov NCT02993068; https://clinicaltrials.gov/ct2/show/NCT02993068.

12.
Contemp Clin Trials ; 119: 106836, 2022 08.
Artículo en Inglés | MEDLINE | ID: mdl-35724842

RESUMEN

Interventions delivered by mobile devices (mHealth interventions) have the potential to increase access to weight management treatment in low-income populations. However, little prior research has examined effects of mHealth programming plus phone-based community health worker (CHW) support for weight management among public housing residents. For our intervention, we first interacted with a community advisory board to collect feedback on proposed intervention components. Transcripts from 5 advisory board meetings were coded and qualitative data was organized into themes. We used these data to inform our ongoing trial, in which public housing residents are randomized to one of three different groups: phone text messaging and digital self-weighing (mHealth only); mHealth intervention plus CHW behavioral phone counseling (mHealth+CHW); or assessment only to evaluate their differential effects on weight loss at 6- and 12-month follow-up. We will examine changes in diet and physical activity behaviors as well as potential mediating and moderating factors. Results of this trial could provide support for technology-based weight management interventions which may have greater potential for scalability and long-term dissemination than face-to-face programming. Clinical Trial Registration Number: NCT04852042.


Asunto(s)
Teléfono Celular , Telemedicina , Envío de Mensajes de Texto , Agentes Comunitarios de Salud , Humanos , Vivienda Popular , Ensayos Clínicos Controlados Aleatorios como Asunto
13.
Res Involv Engagem ; 8(1): 26, 2022 Jun 16.
Artículo en Inglés | MEDLINE | ID: mdl-35710531

RESUMEN

BACKGROUND: The Research Engagement Survey Tool (REST) was developed to examine the level of partner (e.g., patients, caregivers, advocates, clinicians, community members) engagement in research studies. The REST is aligned with eight engagement principles based on the literature and consensus reached through a five round Delphi process. Each of the engagement principles has three-five corresponding items that are assessed on two Likert type scales quantity (how often: never, rarely, sometimes, often, always, not applicable) and quality (how well: poor, fair, good, very good, excellent, not applicable). We conducted a comprehensive validation of the REST. Despite the importance of partner engagement in research, currently no gold standard measure exists. METHODS: Multiple strategies were employed to validate the REST. Here, we examine the internal consistency of items for each of the eight engagement principles. In addition, we examine the convergent validity of the comprehensive (32-item) REST with other measures (e.g., medical mistrust, Community Engagement in Research Index, Partnership Self-Assessment Tool, Wilder collaboration inventory, Partnership Assessment In community-based Research). We propose two scoring approaches for the REST; one aligned with the engagement principles and the other aligned with levels of community engagement: (1) outreach and education, (2) consultation, (3) cooperation, (4) collaboration, and (5) partnership. RESULTS: The REST has strong internal consistency (Cronbach's alpha > 0.75) for each of the eight engagement principals measured on both scales (quality and quantity). The REST had negligible (e.g., medical mistrust, community engagement in research index), low (e.g., Partnership Assessment In community-based Research, Partnership Self-Assessment Tool- benefits scale), and moderate (e.g., Wilder collaboration inventory, Partnership Self-Assessment Tool- synergy scale) statistically significant correlations with other measures based on the Spearman rank correlation coefficient. These results suggest the REST is measuring something similar and correlated to the existing measures, but it captures a different construct (perceived research engagement). CONCLUSIONS: The REST is a valid and reliable tool to assess research engagement of community health stakeholders in the research process. Valid tools to assess research engagement are necessary to examine the impact of engagement on the scientific process and scientific discovery and move the field of stakeholder engagement from best practices and lessons learned to evidence-based approaches based on empirical data.


Researchers often conduct studies with partners (e.g., patients, caregivers, advocates, clinicians, community members) who also have an interest in the research topic. Depending on the research study the level of partner engagement in the research process may be high or low. Partners may be involved from the beginning including determining what topic to study and what questions the study should examine. They may suggest who should be included in the study, the geographic area of focus, and the outcome measures to be examined. In addition, they may help recruit study participants, interpret study results, and plan for how to share the results with those that need to know. No standard way exists to find out how involved a partner has been in a study from the partner's perspective. Here we develop and validate survey questions to measure the level of partner engagement in research studies. We looked at existing survey questions used to measure similar topics to make sure that a person who takes the survey gets consistent scores. We tested the survey with community health stakeholders (e.g., patients, caregivers, advocates, clinicians, community members) who are research partners for studies at universities across the United States. Over 2 years, the partners took different versions of the survey online four times. We used the data we collected from each survey to revise the questions and make sure that it measures partner involvement accurately and reliably. The Research Engagement Survey Tool (REST) has 32 questions to examine eight engagement principles on two scales: quantity (how much) and quality (how well). The REST is a valid and reliable tool to examine partner engagement in research.

14.
Healthcare (Basel) ; 10(5)2022 May 10.
Artículo en Inglés | MEDLINE | ID: mdl-35628017

RESUMEN

Cancer is a significant burden, particularly to individuals of low socioeconomic status (SES). Genetic testing can provide information about an individual's risk of developing cancer and guide future screening and preventative services. However, there are significant financial barriers, particularly for individuals of low SES. This study used the Early Detection of Genetic Risk (EDGE) Study's patient baseline survey (n = 2329) to evaluate the relationship between socioeconomic status and interest in pursuing hereditary cancer genetic testing. Analysis was completed for two interest outcomes-overall interest in genetic testing and interest in genetic testing if the test were free or low cost. Many demographic and SES variables were predictors for interest in genetic testing, including education, income, and MacArthur Subjective Social Scale (SSS). After controlling for the healthcare system, age, and gender, having a higher education level and a higher household income were associated with greater general interest. Lower SSS was associated with greater interest in genetic testing if the test was free or low cost. If genetic testing is the future of preventative medicine, more work needs to be performed to make this option accessible to low-SES groups and to ensure that those services are used by the most underserved populations.

15.
J Gen Intern Med ; 37(Suppl 1): 50-56, 2022 04.
Artículo en Inglés | MEDLINE | ID: mdl-35349011

RESUMEN

INTRODUCTION: Engagement of relevant stakeholders' ideas, opinions, and concerns is critical to the success of modern research projects. We have developed a tool to measure stakeholder engagement, called the Research Engagement Survey Tool (REST). The purpose of this paper is to present the implementation and uptake of the stakeholder engagement measure REST among research teams, including the assessment of barriers and facilitating factors for use of the new research engagement measure in practice. METHODS: In this implementation study, project team members participated in baseline and follow-up web-based surveys. Web-based interviews were conducted with a subset of project teams that implemented the REST. On the baseline survey, project teams were asked to provide details about up to three ongoing or recently completed projects, were asked if they agreed with compensation for REST completion, and were asked if they would like to send the survey to stakeholders or would prefer our project team to email their project stakeholders. Follow-up surveys contained questions on reactions to implementing REST and results of REST. RESULTS: Project team members/researchers who completed the baseline survey (n=86) were mostly female (79%) and Non-Hispanic/Latino(a) White (76%). Those who implemented REST were also mostly female (86%) and Non-Hispanic/Latino(a) White (71%), with an average of 11 years in academic research. About 98% of all participants completing the baseline survey had the capacity to survey partners, while 100% of all teams who implemented REST did. A small portion of respondents indicated the time commitment of REST would be a barrier (29% of baseline survey respondents, 10% of those who implemented REST) and indicated workload would be a barrier (31% of baseline survey respondents, 14% of those who implemented REST). DISCUSSION: The data presented here indicate that REST implementation is feasible in a volunteer group of ongoing research projects.


Asunto(s)
Investigadores , Participación de los Interesados , Femenino , Humanos , Estudios Longitudinales , Masculino , Encuestas y Cuestionarios
16.
Gen Hosp Psychiatry ; 76: 16-24, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35313202

RESUMEN

OBJECTIVES: To understand care managers' experiences treating primary care patients with bipolar disorder and PTSD in a telepsychiatry collaborative care (TCC) program, as part of a large pragmatic trial. METHODS: We conducted individual qualitative interviews with 12 care managers to evaluate barriers and facilitators to implementation of a previously completed TCC intervention for patients with bipolar disorder and/or PTSD. We used directed and conventional content analysis and Consolidated Framework for Implementation Research (CFIR) constructs to organize care manager experiences. RESULTS: Participants described clinical and medication management support from telepsychiatrists and satisfaction with the TCC model as facilitators of success for patients with bipolar disorder and PTSD in underserved communities. Participants also described onboarding of primary care providers and clinic leadership as keys to successful team-care and credited satisfaction with providing Behavioral Activation as essential to sustained delivery of the psychotherapy component of TCC. CONCLUSIONS: Participants described high satisfaction with TCC for patients with bipolar disorder and PTSD. Challenges included lack of clinic leadership and PCP engagement. Early and ongoing promotion of integrated care and prioritizing telepsychiatry consultation with patients, behavioral health professionals and PCPs, may improve patient care, provide ongoing training and improve workforce satisfaction.


Asunto(s)
Trastorno Bipolar , Psiquiatría , Trastornos por Estrés Postraumático , Telemedicina , Trastorno Bipolar/terapia , Humanos , Atención Primaria de Salud , Investigación Cualitativa , Trastornos por Estrés Postraumático/terapia
17.
Soc Sci Med ; 294: 114706, 2022 02.
Artículo en Inglés | MEDLINE | ID: mdl-35033796

RESUMEN

RATIONALE: Many studies propose that patients', caregivers', and children's asthma management practices may diverge from biomedical recommendations because their understandings of asthma (i.e., conceptual models) are different from biomedical perspectives. However, little research in this area has examined conceptual models of asthma using embodiment theory, which suggests that caregivers' and children's experiences of the physical body shape their perspectives and consequent management strategies. OBJECTIVE: We investigated how two embodied processes of symptom perception-detection and interpretation-may influence caregiver or patient conceptions of asthma. METHODS: We interviewed 41 caregivers of children with asthma in Gainesville, Florida, and St. Louis, Missouri, and conducted ethnographic visits or virtual interviews with 19 children with asthma aged 6-16. RESULTS: Four aspects of asthma's embodied experience shaped conceptual models via processes of detection and interpretation: 1) symptoms are experienced in the context of other bodily processes; 2) acute symptoms and exacerbations are more salient than their absence; 3) the embodied experience of asthma is one of integrated physiological and emotional processes; and 4) caregivers and children acquire embodied practices of perceiving symptoms that produce embodied knowledge. CONCLUSION: Participant narratives suggest that embodied experiences of asthma shape caregivers' and children's understandings of asthma in ways that differ from the biomedical model. We argue that a focus on embodied experiences may provide important ground for mutual understanding and communication between providers and caregivers and/or patients.


Asunto(s)
Asma , Cuidadores , Adolescente , Cuidadores/psicología , Niño , Comunicación , Florida , Humanos , Modelos Teóricos
18.
Br J Health Psychol ; 27(2): 484-500, 2022 05.
Artículo en Inglés | MEDLINE | ID: mdl-34523193

RESUMEN

OBJECTIVES: (1) Test whether a mental imagery-based self-regulation intervention increases physical activity behaviour over 90 days; (2) Examine cognitive and affective precursors of change in physical activity behaviour. DESIGN: A randomized control trial with participants (N = 500) randomized to one of six intervention conditions in a 3 (risk communication format: bulleted list, table, risk ladder) x 2 (mental imagery behaviour: physical activity, active control [sleep hygiene]) factorial design. METHODS: After receiving personalized risk estimates via a website on a smartphone, participants listened to an audiorecording that guided them through a mental imagery activity related to improving physical activity (intervention group) or sleep hygiene behaviour (active control). Participants received text message reminders to complete the imagery for 3 weeks post-intervention, 4 weekly text surveys to assess behaviour and its cognitive and affective precursors, and a mailed survey 90 days post-baseline. RESULTS: Physical activity increased over 90 days by 19.5 more minutes per week (95%CI: 2.0, 37.1) in the physical activity than the active control condition. This effect was driven by participants in the risk ladder condition, who exercised 54.8 more minutes (95%CI 15.6, 94.0) in the physical activity condition than participants in the active control sleep hygiene group. Goal planning positively predicted physical activity behaviour (b = 12.2 minutes per week, p = 0.002), but self-efficacy, image clarity, and affective attitudes towards behaviours did not (p > 0.05). CONCLUSIONS: Mental imagery-based self-regulation interventions can increase physical activity behaviour, particularly when supported by personalized disease risk information presented in an easy-to-understand format.


Asunto(s)
Autocontrol , Envío de Mensajes de Texto , Cognición , Ejercicio Físico , Humanos , Motivación
19.
Med Care Res Rev ; 79(2): 267-280, 2022 04.
Artículo en Inglés | MEDLINE | ID: mdl-33957792

RESUMEN

The patient decision aid (PDA) is a promising patient engagement tool for use in shared decision making (SDM). Selecting a PDA is an essential precursor to successful SDM implementation. Little is known regarding the organizational stakeholder process for assessing and selecting a PDA. We conducted a qualitative, multicase study within the context of a maternal health decision to identify the criteria used by stakeholders to select a PDA. We further explored the perceived value of PDA certification on PDA selection. We reported the PDA selection criteria within the domains of (1) Design and Functionality, (2) User Fit, (3) Context and Climate, (4) Support, and (5) Strategic Vision and found that certification was perceived to be a valuable screening mechanism for smaller health organizations. Health organizations and researchers may use our PDA selection criteria and conceptual model to plan future deployments of PDAs and patient engagement tools.


Asunto(s)
Toma de Decisiones Conjunta , Técnicas de Apoyo para la Decisión , Toma de Decisiones , Humanos , Participación del Paciente , Selección de Paciente
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