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1.
Artigo em Inglês | MEDLINE | ID: mdl-34639323

RESUMO

The Research Engagement Survey Tool (REST) examines the level of partner engagement in research studies. This study used mixed methods, including web-based surveys (N = 336), a modified Delphi process (N = 18), and cognitive response interviews (N = 16), with convenience sampling to develop and validate a short version of the REST. We conducted factor analysis and calculated internal consistency for the condensed REST. We validated the condensed REST against the comprehensive REST. All analyses were carried out on two scales (quality and quantity) based on Likert-type response options. We examined convergent validity with other measures theoretically associated with the REST (e.g., the Community Engagement Research Index and the Partnership Self-Assessment Tool). This study produced a 9-item condensed version of the REST. The condensed REST loads on 1 factor, has high internal consistency (Cronbach's alpha = 0.92 for the quantity scale; 0.94 for the quality scale), is significantly correlated (ρ = 0.97; p < 0.001 for both scales) with the comprehensive (32-item) REST, and has negligible, low, and moderate correlation with other measures (e.g., the Partnership Assessment In community-based Research, trust in medical researchers, and the Coalition Self-Assessment Survey). Use of the condensed REST will reduce participant burden and time to complete. This standardized and validated quantitative measure is useful to compare engagement across projects or within a project over time.


Assuntos
Pessoal de Saúde , Projetos de Pesquisa , Análise Fatorial , Humanos , Psicometria , Reprodutibilidade dos Testes , Inquéritos e Questionários
2.
Healthcare (Basel) ; 9(9)2021 Sep 16.
Artigo em Inglês | MEDLINE | ID: mdl-34574991

RESUMO

As healthcare systems progress toward initiatives that increase patient engagement, stakeholder hopes are that shared decision making (SDM) will become routine practice. Yet, there is limited empirical evidence to guide such SDM program implementations, particularly in obstetric practices. The first stage of any project implementation is the "initiation stage", in which project leaders define a project's purpose and stakeholders and structures are put in place to support the new initiative. Our study's objective was to identify factors affecting the initiation stage of an SDM program implementation project for TOLAC, trial of labor after Cesarean. We conducted a multiple-case study of an SDM program implementation in three obstetric settings in Washington State. The research design and analysis were guided by implementation science frameworks and project management literature. Data sources included interviews with key informants from the State, SDM tool vendors, and three project sites, as well as implementation documents. The study results provide insight into how the identified project implementation factors provide an essential foundation for informing project planning, execution, and reflection/evaluation. In this study, the State's decision aid certification program pressured the project sites to shape the project purpose and engage stakeholders that would meet immediate project requirements (specifically, state requirements). The study reveals that external demands may not be in perfect alignment with the internal necessities required for an SDM program's long-term viability and sustainability. Findings may be used by implementers and researchers to model and strategize the early stages of SDM program implementation projects, particularly in the obstetric setting.

3.
BMC Health Serv Res ; 21(1): 922, 2021 Sep 06.
Artigo em Inglês | MEDLINE | ID: mdl-34488741

RESUMO

BACKGROUND: The Collaborative Care Model is a well-established, evidence-based approach to treating depression and other common behavioral health conditions in primary care settings. Despite a robust evidence base, real world implementation of Collaborative Care has been limited and very slow. The goal of this analysis is to better describe and understand the progression of implementation in the largest state-led Collaborative Care program in the nation-the New York State Collaborative Care Medicaid Program. Data are presented using the RE-AIM model, examining the proportion of clinics in each of the model's five steps from 2014 to 2019. METHODS: We used the RE-AIM model to shape our data presentation, focusing on the proportion of clinics moving into each of the five steps of this model over the years of implementation. Data sources included: a New York State Office of Mental Health clinic tracking database, billing applications, quarterly reports, and Medicaid claims. RESULTS: A total of 84% of clinics with which OMH had an initial contact [n = 611clinics (377 FQHCs and 234 non-FQHCs)] received some form of training and technical assistance. Of those, 51% went on to complete a billing application, 41% reported quarterly data at least once, and 20% were able to successfully bill Medicaid. Of clinics that reported data prior to the first quarter of 2019, 79% (n = 130) maintained Collaborative Care for 1 year or more. The receipt of any training and technical assistance was significantly associated with our implementation indices: (completed billing application, data reporting, billing Medicaid, and maintaining Collaborative Care). The average percent of patient improvement for depression and anxiety across 155 clinics that had at least one quarter of data was 44.81%. Training and technical assistance source (Office of Mental Health, another source, or both) and intensity (high/low) were significantly related to implementation indices and were observed in FQHC versus non-FQHC samples. CONCLUSIONS: Offering Collaborative Care training and technical assistance, particularly high intensity training and technical assistance, increases the likelihood of implementation. Other state-wide organizations might consider the provision of training and technical assistance when assisting clinics to implement Collaborative Care.


Assuntos
Medicaid , Atenção Primária à Saúde , Instituições de Assistência Ambulatorial , Humanos , Saúde Mental , New York/epidemiologia , Estados Unidos/epidemiologia
4.
Br J Health Psychol ; 2021 Sep 14.
Artigo em Inglês | MEDLINE | ID: mdl-34523193

RESUMO

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.

5.
JAMA Psychiatry ; 78(11): 1189-1199, 2021 Nov 01.
Artigo em Inglês | MEDLINE | ID: mdl-34431972

RESUMO

Importance: Only one-third of patients with complex psychiatric disorders engage in specialty mental health care, and only one-tenth receive adequate treatment in primary care. Scalable approaches are critically needed to improve access to effective mental health treatments in underserved primary care settings. Objective: To compare 2 clinic-to-clinic interactive video approaches to delivering evidence-based mental health treatments to patients in primary care clinics. Design, Setting, and Participants: This pragmatic comparative effectiveness trial used a sequential, multiple-assignment, randomized trial (SMART) design with patient-level randomization. Adult patients treated at 24 primary care clinics without on-site psychiatrists or psychologists from 12 federally qualified health centers in 3 states who screened positive for posttraumatic stress disorder and/or bipolar disorder and who were not already receiving pharmacotherapy from a mental health specialist were recruited from November 16, 2016, to June 30, 2019, and observed for 12 months. Interventions: Two approaches were compared: (1) telepsychiatry/telepsychology-enhanced referral (TER), where telepsychiatrists and telepsychologists assumed responsibility for treatment, and (2) telepsychiatry collaborative care (TCC), where telepsychiatrists provided consultation to the primary care team. TER included an adaptive intervention (phone-enhanced referral [PER]) for patients not engaging in treatment, which involved telephone outreach and motivational interviewing. Main Outcomes and Measures: Survey questions assessed patient-reported outcomes. The Veterans RAND 12-item Health Survey Mental Component Summary (MCS) score was the primary outcome (range, 0-100). Secondary outcomes included posttraumatic stress disorder symptoms, manic symptoms, depressive symptoms, anxiety symptoms, recovery, and adverse effects. Results: Of 1004 included participants, 701 of 1000 (70.1%) were female, 660 of 994 (66.4%) were White, and the mean (SD) age was 39.4 (12.9) years. Baseline MCS scores were 2 SDs below the US mean; the mean (SD) MCS scores were 39.7 (14.1) and 41.2 (14.2) in the TCC and TER groups, respectively. There was no significant difference in 12-month MCS score between those receiving TCC and TER (ß = 1.0; 95% CI, -0.8 to 2.8; P = .28). Patients in both groups experienced large and clinically meaningful improvements from baseline to 12 months (TCC: Cohen d = 0.81; 95% CI, 0.67 to 0.95; TER: Cohen d = 0.90; 95% CI, 0.76 to 1.04). For patients not engaging in TER at 6 months, there was no significant difference in 12-month MCS score between those receiving PER and TER (ß = 2.0; 95% CI, -1.7 to 5.7; P = .29). Conclusions and Relevance: In this comparative effectiveness trial of patients with complex psychiatric disorders randomized to receive TCC or TER, significantly and substantially improved outcomes were observed in both groups. From a health care system perspective, clinical leadership should implement whichever approach is most sustainable. Trial Registration: ClinicalTrials.gov Identifier: NCT02738944.

6.
Artigo em Inglês | MEDLINE | ID: mdl-34208878

RESUMO

The coronavirus pandemic (COVID-19) has had multilevel effects on non-COVID-19 health and health care, including deferral of routine cancer prevention and screening and delays in surgical and other procedures. Health and health care use has also been affected by pandemic-related loss of employer-based health insurance, food and housing disruptions, and heightened stress, sleep disruptions and social isolation. These disruptions are projected to contribute to excess non-COVID-19 deaths over the coming decades. At the same time municipalities, health systems and individuals are making changes in response to the pandemic, including modifications in the environmental to promote health, implementation of telehealth platforms, and shifts towards greater self-care and using remote platforms to maintain social connections. We used a multi-level biopsychosocial model to examine the available literature on the relationship between COVID-19-related changes and breast cancer prevention to identify current gaps in knowledge and identify potential opportunities for future research. We found that COVID-19 has impacted several aspects of social and economic life, through a variety of mechanisms, including unemployment, changes in health care delivery, changes in eating and activity, and changes in mental health. Some of these changes should be reduced, while others should be explored and enhanced.


Assuntos
Neoplasias da Mama , COVID-19 , Neoplasias da Mama/epidemiologia , Neoplasias da Mama/prevenção & controle , Atenção à Saúde , Feminino , Promoção da Saúde , Humanos , Pandemias , SARS-CoV-2
7.
Transl Behav Med ; 11(9): 1764-1770, 2021 09 15.
Artigo em Inglês | MEDLINE | ID: mdl-34153979

RESUMO

Despite growing numbers in the USA, immigrant populations are underrepresented in existing physical activity (PA) research, in particular Muslim immigrant women. The current study is a pilot evaluation of a culturally adapted evidence-based PA intervention for adult Somali women. Stratified randomization was used to assign participants from a sample of 27 Somali women, aged 18 to 65, to a PA group or a waitlist control group. Bicultural Somali community research team members delivered a 12-week culturally adapted intervention available in English and Somali in a community-based setting. Process and outcome evaluation assessed changes in PA, self-efficacy for PA, access to PA resources, and wellbeing as well as feasibility and satisfaction with the program. Participants in the PA group increased their moderate to vigorous PA significantly more than those from the waitlist group from baseline to post-intervention (2 (SD = 15) to 100 (SD = 53) vs 12 (SD = 21) to 32 (SD = 44) minutes per week). Participants in the PA group had significantly greater scores in wellbeing at post-intervention compared to the waitlist group though there was no significant change from pre- to post-intervention for either group. Participants reported a high level of satisfaction with the program and preliminary evidence supports the general feasibility and acceptability of the program. Findings show that a culturally adapted intervention increased engagement in PA and was feasible and acceptable within a pilot sample of Somali women.


Assuntos
Emigrantes e Imigrantes , Exercício Físico , Adulto , Estudos de Viabilidade , Feminino , Humanos , Projetos Piloto , Autoeficácia , Somália
8.
Med Care Res Rev ; : 10775587211012995, 2021 May 06.
Artigo em Inglês | MEDLINE | ID: mdl-33957792

RESUMO

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.

9.
Prev Med Rep ; 22: 101360, 2021 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-33816090

RESUMO

Community health worker-led interventions may be an optimal approach to promote behavior change among populations with low incomes due to the community health workers' unique insights into participants' social and environmental contexts and potential ability to deliver interventions widely. The objective was to determine the feasibility (implementation, acceptability, preliminary efficacy) of a weight management intervention for adults living in public housing developments. In 2016-2018, in Boston Massachusetts, we conducted a 3-month, two-group randomized trial comparing participants who received a tailored feedback report (control group) to participants who received the same report plus behavioral counseling. Community health workers provided up to 12 motivational interviewing-based counseling sessions in English or Spanish for diet and physical activity behaviors using a website designed to guide standardized content delivery. 102 participants enrolled; 8 (7.8%) were lost at 3-month follow up. Mean age was 46.5 (SD = 11.9) years; the majority were women (88%), Hispanic (67%), with ≤ high school degree (62%). For implementation, among intervention group participants (n = 50), 5 completed 0 sessions and 45 completed a mean of 4.6 (SD = 3.1) sessions. For acceptability, most indicated they would be very likely (79%) to participate again. For preliminary efficacy, adjusted linear regression models showed mean changes in weight (-0.94 kg, p = 0.31), moderate-to-vigorous physical activity (+11.7 min/day, p = 0.14), and fruit/vegetable intake (+2.30 servings/day, p < 0.0001) in the intervention vs. control group. Findings indicate a low-income public housing population was reached through a community health worker-led intervention with sufficient implementation and acceptability and promising beneficial changes in weight, nutrition, and physical activity outcomes.

10.
Artigo em Inglês | MEDLINE | ID: mdl-33671879

RESUMO

Stress is a common belief among breast cancer patients and the public to explain variation in breast cancer incidence. Epidemiological studies interrogating the relationship between stress and cancer have reported mixed results. The impact of the topic and the lack of consensus has sparked this review of the literature to investigate gaps in knowledge and identify areas of research. We first present a brief summary of the biopsychosocial model generally used to conduct research on stress. We then divide the overview of the literature into areas of research focus. These include the role of distressing life events in breast cancer incidence, the role of adverse childhood events in later breast cancer incidence, the importance of race and socioeconomic status (SES) as social determinants of breast cancer incidence, and the specific role of chronic stress in relation to breast cancer. For each topic, we discuss the potential of stress as a risk factor and possible intervention strategies that could reduce the effects of stress. We then identify further research questions to be probed to fill the gaps in knowledge. We conclude with a discussion of future research directions for stress research as it relates to breast cancer incidence.


Assuntos
Neoplasias da Mama , Neoplasias da Mama/epidemiologia , Criança , Humanos , Incidência , Fatores de Risco , Classe Social
11.
Patient Educ Couns ; 104(5): 979-988, 2021 05.
Artigo em Inglês | MEDLINE | ID: mdl-33750594

RESUMO

OBJECTIVES: This study is a randomized controlled trial comparing the efficacy of a virtual counselor (VICKY) to the My Family Health Portrait (MFHP) tool for collecting family health history (FHx). METHODS: A total of 279 participants were recruited from a large safety-net hospital and block randomized by health literacy to use one of the digital FHx tools, followed by a genetic counselor interview. A final sample of 273 participants were included for analyses of primary study aims pertaining to tool concordance, which assessed agreement between tool and genetic counselor. RESULTS: Tool completion differed significantly between tools (VICKY = 97%, MFHP = 51%; p < .0001). Concordance between tool and genetic counselor was significantly greater for participants randomized to VICKY compared to MFHP for ascertaining first- and second-degree relatives (ps<.0001), and most health conditions examined. There was significant interaction by health literacy, with greater differences in concordance observed between tools among those with limited literacy. CONCLUSIONS: A virtual counselor overcomes many of the literacy-related barriers to using traditional digital tools and highlights an approach that may be important to consider when collecting health histories from vulnerable populations. PRACTICE IMPLICATIONS: The usability of digital health history tools will have important implications for the quality of the data collected and its downstream clinical utility.


Assuntos
Conselheiros , Letramento em Saúde , Família , Saúde da Família , Humanos , Anamnese , Populações Vulneráveis
12.
Cancer Causes Control ; 32(5): 483-492, 2021 May.
Artigo em Inglês | MEDLINE | ID: mdl-33591484

RESUMO

As genetics gains favor in clinical oncology, it is important to address patient concerns around confidentiality, privacy, and security of genetic information that might otherwise limit its utilization. We designed a randomized controlled trial to assess the social impact of an online educational tool (FamilyTalk) to increase family communication about colorectal cancer (CRC) risk and screening. Of 208 randomized participants, 149 (71.6%) returned six-month surveys. Overall, there was no difference in CRC screening between the study arms. Privacy and confidentiality concerns about medical and genetic information, reactions to genetic test results, and lifestyle changes did not differ between arms. Participants with pathogenic or likely pathogenic (P/LP) and variant of uncertain significance (VUS) results were more likely than those with negative results to report that the results accurately predicted their disease risks (OR 5.37, p = 0.02 and OR 3.13, p = 0.02, respectively). This trial demonstrated no evidence that FamilyTalk impacted patient-reported outcomes. Low power, due to the limited number of participants with P/LP results in the overall sample, as well as the short follow-up period, could have contributed to the null findings.


Assuntos
Neoplasias Colorretais/diagnóstico , Detecção Precoce de Câncer/métodos , Programas de Rastreamento/métodos , Idoso , Idoso de 80 Anos ou mais , Comunicação , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Medidas de Resultados Relatados pelo Paciente , Risco , Inquéritos e Questionários
13.
Patient Educ Couns ; 104(4): 726-731, 2021 04.
Artigo em Inglês | MEDLINE | ID: mdl-33455827

RESUMO

OBJECTIVE: We currently rely on probands to communicate genetic testing results and health risks within a family to stimulate preventive behaviors, such as cascade testing. Rates of guidelines-based cascade testing are low, possibly due to low frequency or non-urgent communication of risk among family members. Understanding what is being communicated and why may help improve interventions that increase communication and rates of cascade testing. METHODS: Participants (n = 189) who were to receive both positive and negative colorectal cancer (CRC) sequencing results completed surveys on family communication, family functioning, impact of cancer in the family, and future communication of risk and were participants in eMERGE3. Questions were taken from existing surveys and administered electronically using email and a web driven tool. RESULTS: Common family member targets of CRC risk communication, before results were received, were mothers and fathers, then sisters and grandchildren and finally, children and brothers. A communication impact score of 0.66 (sd = 0.83) indicated low-to-moderate communication impact. Age and education were significantly associated with frequency of familial communication, but not on the cancer-related impact of familial communication. CONCLUSIONS: There is infrequent communication about cancer risk from probands to family members. PRACTICE IMPLICATIONS: These results demonstrate an opportunity to help families improve communication.


Assuntos
Neoplasias Colorretais , Testes Genéticos , Comunicação , Família , Feminino , Predisposição Genética para Doença , Humanos , Masculino , Fatores de Risco
14.
J Rural Health ; 37(4): 780-787, 2021 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-33022079

RESUMO

PURPOSE: Availability of mental health services is limited in the rural United States. Two promising models to reach patients with limited access to care are telehealth referral and collaborative care. The objective of this study was to assess telepsychiatrist- and telepsychologist-level facilitators and barriers to satisfaction with and implementation of these 2 telehealth models in rural settings. METHODS: Focus groups were held in 2019 using a semistructured interview guide. Participants were off-site telepsychiatrists (N = 10) and telepsychologists (N = 4) for primary care clinics across 3 states (Washington, Michigan, and Arkansas) involved in a recent pragmatic comparative effectiveness trial. Qualitative analysis occurred inductively by 2 independent coders. FINDINGS: Participants were satisfied with the models partly owing to good patient rapport and expanding access to care. Teamwork was highlighted as a facilitator in collaborative care and was often related to work with care managers. However, participants described communication with primary care providers as a challenge, especially in the telehealth referral arm. Barriers centered on variability of logistical processes (eg, symptom monitoring, scheduling, electronic medical record processes, and credentialing) among sites. Staff turnover, variable clinic investment, and inadequacy of training were possible explanations for these barriers. CONCLUSIONS: Participants described high motivation to provide team-based, remote care for patients, though they experienced operational challenges. Centralized credentialing, scheduling, and record keeping are possible solutions. These findings are important because consulting psychiatrists and psychologists may play a leadership role in the dissemination of these models.

15.
Med Decis Making ; 41(1): 74-88, 2021 01.
Artigo em Inglês | MEDLINE | ID: mdl-33106087

RESUMO

BACKGROUND: Personalized medicine may increase the amount of probabilistic information patients encounter. Little guidance exists about communicating risk for multiple diseases simultaneously or about communicating how changes in risk factors affect risk (hereafter "risk reduction"). PURPOSE: To determine how to communicate personalized risk and risk reduction information for up to 5 diseases associated with insufficient physical activity in a way laypeople can understand and that increases intentions. METHODS: We recruited 500 participants with <150 min weekly of physical activity from community settings. Participants completed risk assessments for diabetes, heart disease, stroke, colon cancer, and breast cancer (women only) on a smartphone. Then, they were randomly assigned to view personalized risk and risk reduction information organized as a bulleted list, a simplified table, or a specialized vertical bar graph ("risk ladder"). Last, they completed a questionnaire assessing outcomes. Personalized risk and risk reduction information was presented as categories (e.g., "very low"). Our analytic sample (N = 372) included 41.3% individuals from underrepresented racial/ethnic backgrounds, 15.9% with vocational-technical training or less, 84.7% women, 43.8% aged 50 to 64 y, and 71.8% who were overweight/obese. RESULTS: Analyses of covariance with post hoc comparisons showed that the risk ladder elicited higher gist comprehension than the bulleted list (P = 0.01). There were no significant main effects on verbatim comprehension or physical activity intentions and no moderation by sex, race/ethnicity, education, numeracy, or graph literacy (P > 0.05). Sequential mediation analyses revealed a small beneficial indirect effect of risk ladder versus list on intentions through gist comprehension and then through perceived risk (bIndirectEffect = 0.02, 95% confidence interval: 0.00, 0.04). CONCLUSION: Risk ladders can communicate the gist meaning of multiple pieces of risk information to individuals from many sociodemographic backgrounds and with varying levels of facility with numbers and graphs.


Assuntos
Efeitos Psicossociais da Doença , Letramento em Saúde/métodos , Relações Profissional-Paciente , Medição de Risco/métodos , Adulto , Idoso , Feminino , Letramento em Saúde/estatística & dados numéricos , Humanos , Masculino , Pessoa de Meia-Idade , Medição de Risco/normas , Medição de Risco/estatística & dados numéricos , Fatores de Risco , Comportamento de Redução do Risco , Inquéritos e Questionários
16.
Transl Behav Med ; 11(2): 563-572, 2021 03 16.
Artigo em Inglês | MEDLINE | ID: mdl-32579152

RESUMO

Successful translation of genetic information into patient-centered care and improved outcomes depends, at least in part, on patients' genetic knowledge. Although genetic knowledge is believed to be an important facilitator of familial communication of genetic risk information, empirical evidence of this association is lacking. We examined whether genetic knowledge was related to frequency of current familial communication about colorectal cancer and polyp (CRCP) risk, and future intention to share CRCP-related genomic test results with family members in a clinical sample of patients. We recruited 189 patients eligible for clinical CRCP sequencing to the eMERGE III FamilyTalk randomized controlled trial and surveyed them about genetic knowledge and familial communication at baseline. Participants were primarily Caucasian, 47% male, average age of 68 years, mostly well educated, and with high-income levels. Genetic knowledge was positively associated with future-intended familial communication of genetic information (odds ratio = 1.11, 95% confidence interval: 1.02-1.23), but not associated with current communication of CRC risk (ß = 0.01, p = .58). Greater current communication of CRC risk was associated with better family functioning (ß = 0.04, p = 8.2e-5). Participants' genetic knowledge in this study was minimally associated with their intended familial communication of genetic information. Although participants have good intentions of communication, family-level factors may hinder actual follow through of these intentions. Continued focus on improving proband's genetic knowledge coupled with interventions to overcome family-level barriers to communication may be needed to improve familial communication rates.


Assuntos
Neoplasias Colorretais , Intenção , Idoso , Neoplasias Colorretais/genética , Comunicação , Família , Feminino , Humanos , Masculino , Fatores de Risco
17.
Transl Behav Med ; 11(2): 441-451, 2021 03 16.
Artigo em Inglês | MEDLINE | ID: mdl-32421173

RESUMO

Engagement activities are defined along a continuum that analyzes and represents nonacademic stakeholder activities and interactions with academic researchers. Proposed continua begin with none to limited stakeholder inclusion and input into research and continue with descriptions of increasing presence, input, and participation in decision-making. Despite some agreement in the literature, development of consistent terminology and definitions has been recommended to promote the common understanding of strategies in engaged research. This paper sought to develop and understand classifications and definitions of community-engaged research that can serve as the foundation of a measure of engaged research that permits comparisons among engagement strategies and the outcomes that they produce in health- and healthcare-related research studies. Data on academic and stakeholder perceptions and understandings of classifications and definitions were obtained using Delphi process (N = 19) via online and face-to-face survey and cognitive response interviews (N = 16). Participants suggested the need for more nuanced understanding of engagement along portions of the continuum, with active involvement and decision-making as engagement progressed. Cognitive interview responses suggested that outreach and education is a more advanced level of engagement than previously discussed in the literature and viewed consultation negatively because it required work without guaranteeing community benefit. It is possible to define a continuum of patient- and community-engaged research that is understood and accepted by both academic researchers and community members. However, future research should revisit the understanding and depiction of the strategies that are to be used in measure development.


Assuntos
Pesquisa Participativa Baseada na Comunidade , Pesquisadores , Atenção à Saúde , Pesquisa sobre Serviços de Saúde , Humanos , Inquéritos e Questionários
18.
J Gerontol B Psychol Sci Soc Sci ; 76(7): 1371-1387, 2021 Aug 13.
Artigo em Inglês | MEDLINE | ID: mdl-32827215

RESUMO

OBJECTIVES: Most evidence concerning aging ignores women's sexual orientation, yet sexual orientation-related discrimination across the life course may influence older lesbian and bisexual women's risk for poorer health. Understanding aging-well in this group is vital to development, testing, and implementation of evidence-based health promotion programming and services for aging sexual minority women. METHOD: Data were from the Women's Health Initiative (N = 15,691; heterosexual n = 15,002, lesbian n = 440, bisexual n = 249) extension study. Multivariable linear and logistic regression tested associations between sexual orientation and indicators of successful, effective, and optimal aging-well in age-stratified groups of women (60-74 and 75+). RESULTS: Lesbians aged 60-74 were more likely (odds ratio [OR] 1.59, 95% confidence interval [CI] 1.16, 2.18) to report good self-mastery, more social support (b = 2.92, 95% CI, 1.99, 3.85), and greater likelihood of enjoying life (OR 1.46, 95% CI 1.06, 2.01) compared with heterosexual women. Bisexual women aged 75+ reported increased personal growth (b = 1.09, 95% CI 0.23, 1.95) compared to heterosexuals. While lesbians aged 75+ had greater likelihood of living in a nursing home (OR 1.96; 95% CI 1.01, 3.82) and were less likely to be happy at least most of the time (OR 0.68, 95% CI 0.49, 0.99), they reported greater self-mastery (OR 1.55; 95% CI 1.06, 2.26) than their heterosexual peers. DISCUSSION: Aging-well is not the same for all women. Health promotion programs may consider maximizing sexual minority women's internal and external resources-including social supports, self-mastery, and personal growth-to promote wellness in older age.

19.
Contemp Clin Trials ; 101: 106257, 2021 02.
Artigo em Inglês | MEDLINE | ID: mdl-33373667

RESUMO

Identifying patients with high genetic risk for cancer has important clinical ramifications, but hereditary cancer risk is often not identified because of testing barriers at both the provider and patient level. It is unknown how to best implement appropriate genetic testing and follow-up care into an operating primary care clinic. Implementation studies to date have been conducted in high resourced facilities under optimal conditions, often not at the clinic level. This study aims to compare and evaluate two population-wide engagement strategies for identifying members of a primary care clinic's population with a family or personal history of cancer and offering high-risk individuals genetic testing for cancer susceptibility mutations. The two engagement strategies are: 1) point of care screening (POC), conducted when a patient is scheduled for an appointment and 2) direct patient engagement (DPE), where outreach provides the patient an opportunity to complete screening online on their own time. The study will identify changes, problems, and inefficiencies in clinical flow during and after the implementation of risk assessment and genomic testing for cancer risk across primary care clinics. It will also evaluate the effects of the two engagement strategies on patient, provider, and clinic leader outcomes, including perceptions of benefits, harms, and satisfaction with the engagement strategy and process of cancer risk assessment and genetic testing, across gender, racial/ethnic, socioeconomic, and genetic literacy divides. Finally, the study will evaluate the cost-effectiveness and budget impact of each engagement strategy.


Assuntos
Predisposição Genética para Doença , Neoplasias , Testes Genéticos , Humanos , Neoplasias/diagnóstico , Neoplasias/genética , Atenção Primária à Saúde , Medição de Risco
20.
Gen Hosp Psychiatry ; 68: 38-45, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33310012

RESUMO

OBJECTIVE: mHealth can be a valuable means of monitoring symptoms and supporting care for rural patients, but barriers to implementation remain. This study aimed to examine care manager perspectives on the adoption, use and impact of an mHealth system deployed within a pragmatic Collaborative Care trial for rural patients with PTSD and/or Bipolar Disorder. METHOD: Sixteen care managers at 12 Federally Qualified Health Centers in 3 states participated in semi-structured interviews. Interviews were transcribed, coded, and thematically analyzed using the Unified Theory of Adoption and Use of Technology as a conceptual framework. App metadata was used to assess the frequency of a care manager reported phenomenon, clinically disengaged app use. RESULTS: 4 themes were identified: infrastructural limitations; redundant and incompatible clinical and mHealth workflows; cross platform and web access; and patient engagement and clinically disengaged app use. Most users had a period of consistently submitting symptom measures via the app while disengaged from care for >4 weeks.

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