Your browser doesn't support javascript.
loading
Show: 20 | 50 | 100
Results 1 - 20 de 28
Filter
2.
Prev Med Rep ; 30: 102029, 2022 Dec.
Article in English | MEDLINE | ID: mdl-36281349

ABSTRACT

Objectives: US males initiate HPV vaccination at older ages than females and currently have low population coverage. We aim to describe the prevalence and predictors of HPV vaccination initiation among males of White, Black, and Middle-Eastern/North-African (MENA) descent in southeast Michigan. Methods: We conducted three community-based surveys in 2019 that provided primary data via self report. Using population weights and multivariate modeling, we measured the prevalence and predictors of HPV vaccine initiation in each race/ethnicity of men (age 18-34 years) analyzed. Results: The vaccine initiation rates were 44.5 % (95 % CI: 44.4, 44.6) for White men, 46.2 % (46.0, 46.4) for Black men, and 23.2 % (22.8, 23.6) for MENA men, (p < 0.001). Being a student, compared to unemployed or disabled, was significantly associated with HPV vaccine initiation across all three races/ethnicities. Married men of any race/ethnicity were unlikely to be vaccinated. MENA men born in the US and having some college education were also more likely to initiate HPV vaccination. Conclusions: White, Black, and MENA men are not vaccinated in accord with Healthy (Healthy People 2030, 2022) goals. Each race/ethnicity has different predictors of vaccination.

3.
Vaccines (Basel) ; 10(8)2022 Jul 27.
Article in English | MEDLINE | ID: mdl-35893836

ABSTRACT

In Colombia, the uptake rate of the HPV vaccine dropped from 96.7% after its introduction in 2013 to 9% in 2020. To identify the behavioural components of HPV-vaccine hesitancy in females aged 15 and under and their families, we conducted a convergent mixed-methods study in which 196 parents/caregivers responded to an online questionnaire and 10 focus groups were held with 13 of these parents/caregivers, and 50 age-eligible girls. The study is novel as it is the first to explore the factors influencing HPV-vaccine hesitancy alongside the COVID vaccine within an integrative model of behaviour change, the capability-opportunity-motivation-behaviour (COM-B) model. We found that COVID-19 has had an impact on the awareness of HPV and HPV vaccination. Lack of information about the vaccination programs, concerns about vaccine safety and the relationship between HPV and sexuality could be related to vaccine hesitancy. Trust in medical recommendations and campaigns focused on the idea that vaccination is a way of protecting daughters from cervical cancer could improve HPV vaccine uptake.

4.
Elife ; 112022 06 28.
Article in English | MEDLINE | ID: mdl-35762572

ABSTRACT

Background: Using screen counts, women 50-64 years old have lower cancer screening rates for cervical and colorectal cancers (CRC) than all other age ranges. This paper aims to present woman-centric cervical cancer and CRC screenings to determine the predictor of being up-to-date for both. Methods: We used the Behavioral Risk Factor Surveillance System (BRFSS), an annual survey to guide health policy in the United States, to explore the up-to-date status of dual cervical cancer and CRC screening for women 50-64 years old. We categorized women into four mutually exclusive categories: up-to-date for dual-screening, each single screen, or neither screen. We used multinomial multivariate regression modeling to evaluate the predictors of each category. Results: Among women ages 50-64 years old, dual-screening was reported for 58.2% (57.1-59.4), cervical cancer screening alone (27.1% (26.0-28.2)), CRC screening alone (5.4% (4.9-5.9)), and neither screen (9.3% (8.7-9.9)). Age, race, education, income, and chronic health conditions were significantly associated with dual-screening compared to neither screen. Hispanic women compared to non-Hispanic White women were more likely to be up-to-date with cervical cancer screening than dual-screening (adjusted odds ratio [aOR] = 1.39 (1.10, 1.77)). Compared to younger women, those 60-64 years are significantly more likely to be up-to-date with CRC screening than dual-screening (aOR = 1.75 (1.30, 2.35)). Conclusions: Screening received by each woman shows a much lower rate of dual-screening than prior single cancer screening rates. Addressing dual-screening strategies rather than single cancer screening programs for women 50-64 years may increase both cancer screening rates. Funding: This work was supported by NIH through the Michigan Institute for Clinical and61 Health Research UL1TR002240 and by NCI through The University of Michigan Rogel Cancer62 Center P30CA046592 grants.


Routine screenings for cervical and colorectal cancers save lives by detecting cancers at an early stage when they are more treatable and more likley to cure. Most cancer screening in the United States is focused on single cancer screening programs, often held at community health fairs, pop-up screening vans and other settings, without coordination with the individuals' primary care doctors. This is problematic because the primary care physician cannot counsel if the results are abnormal and advise when the next routine screen is appropriate. This leads to gaps in women not being informed that they are due for routine screening and gaps to act on any abnormal screening results. This is especially problematic for women aged 50 to 64, who are less likely to screen for either cancer alone compared to other age groups. Currently, 86% of women in the United States are up to date with cervical cancer screening, and 64% are up to date with colorectal cancer screening. However, it is not clear how many women in this age group receive both screens, compared to a single screen or neither screen. Harper et al. analyzed data from over 40,000 women aged 50 to 64, collected in a United States health survey in 2018. This study revealed that only 59% of the women reported being up to date with cervical and colorectal cancer screenings. Compared to women who did not screen at all, women completing both screens were more educated, had higher incomes, and were more likely to have other chronic conditions such as arthritis, diabetes, depression and other cancers. These findings reveal that the number of women aged 50 to 64 in the United States, who are up to date with both cancer screenings, is still well below national targets. Harper et al. propose that shifting towards a women-centric focus, with primary care physicians or health care systems responsible for managing screening efforts, could decrease cancer incidence and mortality. In future, self-test kits for both cancers should help encourage more women to have both screens in a comfortable environment. This change in focus will also allow primary care physicians to notify women at appropriate intervals to attend routine screening and immediate follow-ups in the case of abnormal results.


Subject(s)
Colorectal Neoplasms , Uterine Cervical Neoplasms , Colorectal Neoplasms/diagnosis , Colorectal Neoplasms/epidemiology , Cross-Sectional Studies , Early Detection of Cancer , Female , Humans , Mass Screening , Middle Aged , United States/epidemiology , Uterine Cervical Neoplasms/diagnosis , Uterine Cervical Neoplasms/epidemiology
5.
Ann Fam Med ; (20 Suppl 1)2022 04 01.
Article in English | MEDLINE | ID: mdl-36857034

ABSTRACT

COVID-19 has caused disruptions in health care, in particular cancer screenings. The primary aim of our work was to evaluate the degree to which populations were accepting of home-based screenings for colorectal cancer (CRC) and cervical cancer (primary HPV testing). Three groups of adults having distinct health burdens which may affect acceptance of home-based cancer screening were identified through outpatient electronic medical records as follows as either having survived a COVID hospitalization, having been positive for non-COVID respiratory illness or having type 2 diabetes. 132 respondents (58% female) completed an online survey with hypothetical cases about their acceptance of home-based CRC or cervical cancer screening. Among females, urine and vaginal screening for primary HPV testing was acceptable to 64% and 59%, respectively. Among both males and females, CRC home screening with fecal immunochemical test (FIT) or Cologuard was acceptable to 60% of the respondents. When adjusting for education, women with a positive attitude toward home-based urine /vaginal screening were 49 times and 23 times more likely to have a positive attitude toward CRC screening (aOR=48.7 (95% CI: 7.1, 337) and aOR=23.2 (95% CI: 3.8, 142), respectively). This report indicates that home-based cancer screens for CRC and primary HPV testing are acceptable to men and women and may allow for greater compliance with screening in the future.


Subject(s)
COVID-19 , Diabetes Mellitus, Type 2 , Papillomavirus Infections , Uterine Cervical Neoplasms , Adult , Male , Female , Humans , Early Detection of Cancer , SARS-CoV-2 , Pandemics , Patient-Centered Care
6.
Vaccines (Basel) ; 9(6)2021 Jun 17.
Article in English | MEDLINE | ID: mdl-34204379

ABSTRACT

The success of large-scale COVID-19 vaccination campaigns is contingent upon people being willing to receive the vaccine. Our study explored COVID-19 vaccine hesitancy and its correlates in eight different countries around the globe. We analyzed convenience sample data collected between March 2020 and January 2021 as part of the iCARE cross-sectional study. Univariate and multivariate statistical analyses were conducted to explore the correlates of vaccine hesitancy. We included 32,028 participants from eight countries, and observed that 27% of the participants exhibited vaccine hesitancy, with increases over time. France reported the highest level of hesitancy (47.3%) and Brazil reported the lowest (9.6%). Women, younger individuals (≤29 years), people living in rural areas, and those with a lower perceived income were more likely to be hesitant. People who previously received an influenza vaccine were 70% less likely to report COVID-19 vaccine hesitancy. We observed that people reporting greater COVID-19 health concerns were less likely to be hesitant, whereas people with higher personal financial concerns were more likely to be hesitant. Our findings indicate that there is substantial vaccine hesitancy in several countries, with cross-national differences in the magnitude and direction of the trend. Vaccination communication initiatives should target hesitant individuals (women, younger adults, people with lower incomes and those living in rural areas), and should highlight the immediate health, social and economic benefits of vaccination across these settings. Country-level analyses are warranted to understand the complex psychological, socio-environmental, and cultural factors associated with vaccine hesitancy.

7.
Hum Vaccin Immunother ; 17(9): 2940-2945, 2021 09 02.
Article in English | MEDLINE | ID: mdl-33998949

ABSTRACT

This study examined whether future COVID-19 vaccine acceptance differed based on an experimental manipulation of the vaccine safety and effectiveness profile. Data come from the Detroit Metro Area Community Study, a population-based study conducted July 15-20, 2020. Participants were asked whether they would get a new COVID-19 vaccine after being randomly assigned information about the vaccine's effectiveness (50% or 95%) and chance of fever (5% or 20%). Among 1,117 Detroiters, 51.3% would accept a COVID-19 vaccine that is 50% effective and 77.1% would accept a vaccine that is 95% effective. Women and adults ≥65 were more accepting of a vaccine; Black Detroiters were less accepting. Believing vaccines to be important, effective, and safe was associated with higher acceptance. Uptake of a COVID-19 may be limited, depending on perceived vaccine effectiveness and general attitudes toward vaccines. Public health approaches to modifying these attitudes will be especially important in the Black community.


Subject(s)
COVID-19 Vaccines , COVID-19 , Adult , Aged , Cross-Sectional Studies , Female , Humans , Male , Michigan , Middle Aged , Patient Acceptance of Health Care , SARS-CoV-2
8.
Vaccines (Basel) ; 10(1)2021 Dec 22.
Article in English | MEDLINE | ID: mdl-35062668

ABSTRACT

Governments, public health officials and pharmaceutical companies have all mobilized resources to address the COVID-19 pandemic. Lockdowns, social distancing, and personal protective behaviours have been helpful but have shut down economies and disrupted normal activities. Vaccinations protect populations from COVID-19 and allow a return to pre-pandemic ways of living. However, vaccine development, distribution and promotion have not been sufficient to ensure maximum vaccine uptake. Vaccination is an individual choice and requires acceptance of the need to be vaccinated in light of any risks. This paper presents a behavioural sciences framework to promote vaccine acceptance by addressing the complex and ever evolving landscape of COVID-19. Effective promotion of vaccine uptake requires understanding the context-specific barriers to acceptance. We present the AACTT framework (Action, Actor, Context, Target, Time) to identify the action needed to be taken, the person needed to act, the context for the action, as well as the target of the action within a timeframe. Once identified a model for identifying and overcoming barriers, called COM-B (Capability, Opportunity and Motivation lead to Behaviour), is presented. This analysis identifies issues associated with capability, opportunity and motivation to act. These frameworks can be used to facilitate action that is fluid and involves policy makers, organisational leaders as well as citizens and families.

9.
Vaccines (Basel) ; 10(1)2021 Dec 28.
Article in English | MEDLINE | ID: mdl-35062697

ABSTRACT

Despite their disparate rates of infection and mortality, many communities of color report high levels of vaccine hesitancy. This paper describes racial differences in COVID-19 vaccine uptake in Detroit, and assesses, using a mediation model, how individuals' personal experiences with COVID-19 and trust in authorities mediate racial disparities in vaccination acceptance. The Detroit Metro Area Communities Study (DMACS) is a panel survey of a representative sample of Detroit residents. There were 1012 respondents in the October 2020 wave, of which 856 (83%) were followed up in June 2021. We model the impact of race and ethnicity on vaccination uptake using multivariable logistic regression, and report mediation through direct experiences with COVID as well as trust in government and in healthcare providers. Within Detroit, only 58% of Non-Hispanic (NH) Black residents were vaccinated, compared to 82% of Non-Hispanic white Detroiters, 50% of Hispanic Detroiters, and 52% of other racial/ethnic groups. Trust in healthcare providers and experiences with friends and family dying from COVID-19 varied significantly by race/ethnicity. The mediation analysis reveals that 23% of the differences in vaccine uptake by race could be eliminated if NH Black Detroiters were to have levels of trust in healthcare providers similar to those among NH white Detroiters. Our analyses suggest that efforts to improve relationships among healthcare providers and NH Black communities in Detroit are critical to overcoming local COVID-19 vaccine hesitancy. Increased study of and intervention in these communities is critical to building trust and managing widespread health crises.

10.
Transl Behav Med ; 10(4): 873-876, 2020 10 08.
Article in English | MEDLINE | ID: mdl-33030537

ABSTRACT

Since its inception in 2016, the establishment of learning communities led by senior Society of Behavioral Medicine (SBM) members has been central to the SBM's Mid-Career Leadership Institute (Institute). At the beginning of an initial two-day intensive workshop, groups of approximately six fellows are placed together, and one or two senior SBM members are asked to lead group mentoring. Senior SBM members serve as mentors during quarterly calls that are conducted over the year in order for group members to develop and present an individual leadership project at the following annual meeting. Group mentoring relies on the social dynamic that emerges from the group's own social norms and roles; it is designed to advance the careers of group members. To our knowledge, this is the first commentary describing a program of formal group mentoring for mid-career leadership development in a professional association. Based on the authors' experience as mentors, thematic and descriptive analyses of the initial workshop evaluations, and contemporaneous notes, we discuss the structure, process, and project outcomes of the formal group mentoring in SBM's Institute. Early process evaluation of the Institute suggests that the Fellows benefitted from the group mentoring experience.


Subject(s)
Behavioral Medicine , Mentoring , Humans , Leadership , Mentors
11.
EClinicalMedicine ; 23: 100435, 2020 Jun.
Article in English | MEDLINE | ID: mdl-32637896
12.
Prev Med ; 111: 21-27, 2018 06.
Article in English | MEDLINE | ID: mdl-29277413

ABSTRACT

Behavioral and mental health risk factors are prevalent among primary care patients and contribute substantially to premature morbidity and mortality and increased health care utilization and costs. Although prior studies have found most adults screen positive for multiple risk factors, limited research has attempted to identify factors that most commonly co-occur, which may guide future interventions. The purpose of this study was to identify subgroups of primary care patients with co-occurring risk factors and to examine sociodemographic characteristics associated with these subgroups. We assessed 12 behavioral health risk factors in a sample of adults (n=1628) receiving care from nine primary care practices across six U.S. states in 2013. Using latent class analysis, we identified four distinct patient subgroups: a 'Mental Health Risk' class (prevalence=14%; low physical activity, high stress, depressive symptoms, anxiety, and sleepiness), a 'Substance Use Risk' class (29%; highest tobacco, drug, alcohol use), a 'Dietary Risk' class (29%; high BMI, poor diet), and a 'Lower Risk' class (27%). Compared to the Lower Risk class, patients in the Mental Health Risk class were younger and less likely to be Latino/Hispanic, married, college educated, or employed. Patients in the Substance Use class tended to be younger, male, African American, unmarried, and less educated. African Americans were over 7 times more likely to be in the Dietary Risk versus Lower Risk class (OR 7.7, 95% CI 4.0-14.8). Given the heavy burden of behavioral health issues in primary care, efficiently addressing co-occurring risk factors in this setting is critical.


Subject(s)
Health Behavior/physiology , Mental Disorders/prevention & control , Primary Health Care , Adult , Aged , Diet/psychology , Ethnicity/statistics & numerical data , Exercise , Female , Humans , Male , Middle Aged , Prevalence , Risk Factors , Socioeconomic Factors , Substance-Related Disorders , United States
13.
Health Educ Res ; 33(1): 14-25, 2018 02 01.
Article in English | MEDLINE | ID: mdl-29112721

ABSTRACT

Recommendations for the prevention of childhood obesity encourage providers to counsel parents and their children on healthy diet and activity behaviors. This study evaluated the feasibility of a theory-based, tailored communication intervention for obesity prevention (Team Up for Health) delivered during a well-child visit. A two-armed randomized controlled trial was used. Parents of children aged 4-10 years were recruited from a list of patients due for a well-child visit at a pediatric primary care clinic. Parents were randomized to either the 'immediate' condition (parent and pediatrician received the tailored report at the well-child visit) or the 'delayed' condition (parent received the report at the end of the study). Self-report measures assessed physical activity, fruits, vegetables, television time, sugary drinks, and 100% fruit juice. Parents completed assessments at baseline, <48 h and 4-week follow-up. Providers were interviewed at the end of the study. Independent t-tests were used to examine between group differences. Seven areas of feasibility were evaluated: Recruitment, randomization, measurement, retention, acceptability, implementation and demand. Results showed high rates of measurement (85%) and acceptability (89%) and implementation (80%) of the intervention. In conclusion, Team Up for Health was feasible; however, a larger study is needed to evaluate its efficacy.


Subject(s)
Diet, Healthy , Health Education/organization & administration , Parents/education , Pediatric Obesity/prevention & control , Primary Health Care/organization & administration , Child , Child, Preschool , Communication , Exercise , Feasibility Studies , Female , Humans , Male , Screen Time , Socioeconomic Factors , Television
14.
J Behav Med ; 40(1): 203-213, 2017 Feb.
Article in English | MEDLINE | ID: mdl-27481103

ABSTRACT

The dissemination and implementation of evidence-based behavioral medicine interventions into real world practice has been limited. The purpose of this paper is to discuss specific limitations of current behavioral medicine research within the context of the RE-AIM framework, and potential opportunities to increase public health impact by applying novel intervention designs and data collection approaches. The MOST framework has recently emerged as an alternative approach to development and evaluation that aims to optimize multicomponent behavioral and bio-behavioral interventions. SMART designs, imbedded within the MOST framework, are an approach to optimize adaptive interventions. In addition to innovative design strategies, novel data collection approaches that have the potential to improve the public-health dissemination include mHealth approaches and considering environment as a potential data source. Finally, becoming involved in advocacy via policy related work may help to improve the impact of evidence-based behavioral interventions. Innovative methods, if increasingly implemented, may have the ability to increase the public health impact of evidence-based behavioral interventions to prevent disease.


Subject(s)
Behavior Therapy/trends , Behavioral Medicine/trends , Biomedical Research/trends , Evidence-Based Medicine/statistics & numerical data , Health Promotion/trends , Forecasting , Health Services Research/trends , Humans , Public Health
15.
Am J Med ; 129(10): 1022-9, 2016 10.
Article in English | MEDLINE | ID: mdl-26953063

ABSTRACT

Based on a collaborative symposium in 2014 hosted by the Society of Behavioral Medicine (SBM) and the American College of Sports Medicine (ACSM), this paper presents a model for physical activity counseling for primary care physicians (PCPs). Most US adults do not meet national recommendations for physical activity levels. Socioecological factors drive differences in physical activity levels by geography, sex, age, and racial/ethnic group. The recent Patient Protection and Affordable Care Act incentivizes PCPs to offer patients physical activity counseling. However, PCPs have reported socioecological barriers to physical activity counseling and also patient barriers to physical activity, spanning from the individual to the environmental (eg, lack of safe spaces for physical activity), policy (eg, reimbursement policies), and organizational (eg, electronic medical record protocols, worksite norms/policies) levels. The aims of this paper are to: 1) discuss barriers to PCP counseling for physical activity; 2) provide evidence-based strategies and techniques to help PCPs address these counseling barriers; and 3) suggest practical steps for PCPs to counsel patients on physical activity using strategies and supports from policy, the primary care team, and other support networks.


Subject(s)
Counseling/methods , Exercise , Physicians, Primary Care , Primary Health Care/methods , Clinical Competence , Humans , Mass Screening , Patient Protection and Affordable Care Act , Reimbursement Mechanisms , Risk Reduction Behavior , Time Factors
16.
Ann Fam Med ; 12(6): 505-13, 2014.
Article in English | MEDLINE | ID: mdl-25384812

ABSTRACT

PURPOSE: To describe the frequency and patient-reported readiness to change, desire to discuss, and perceived importance of 13 health risk factors in a diverse range of primary care practices. METHODS: Patients (n = 1,707) in 9 primary care practices in the My Own Health Report (MOHR) trial reported general, behavioral, and psychosocial risk factors (body mass index [BMI], health status, diet, physical activity, sleep, drug use, stress, anxiety or worry, and depression). We classified responses as "at risk" or "healthy" for each factor, and patients indicated their readiness to change and/or desire to discuss identified risk factors with providers. Patients also selected 1 of the factors they were ready to change as most important. We then calculated frequencies within and across these factors and examined variation by patient characteristics and across practices. RESULTS: On average, patients had 5.8 (SD = 2.12; range, 0-13) unhealthy behaviors and mental health risk factors. About 55% of patients had more than 6 risk factors. On average, patients wanted to change 1.2 and discuss 0.7 risks. The most common risks were inadequate fruit/vegetable consumption (84.5%) and overweight/obesity (79.6%). Patients were most ready to change BMI (33.3%) and depression (30.7%), and most wanted to discuss depression (41.9%) and anxiety or worry (35.2%). Overall, patients rated health status as most important. CONCLUSIONS: Implementing routine comprehensive health risk assessments in primary care will likely identify a high number of behavioral and psychosocial health risks. By soliciting patient priorities, providers and patients can better manage counseling and behavior change.


Subject(s)
Communication , Health Behavior , Patient Acceptance of Health Care/statistics & numerical data , Primary Health Care/methods , Primary Health Care/statistics & numerical data , Adult , Aged , Alcohol Drinking/epidemiology , Anxiety/epidemiology , Body Mass Index , Depression/epidemiology , Diet/statistics & numerical data , Female , Health Status , Humans , Male , Middle Aged , Motor Activity , Physician-Patient Relations , Risk Assessment/methods , Risk Factors , Sleep , Smoking/epidemiology , Stress, Psychological/epidemiology , Substance-Related Disorders/epidemiology
17.
Ann Fam Med ; 12(6): 525-33, 2014.
Article in English | MEDLINE | ID: mdl-25384814

ABSTRACT

PURPOSE: Guidelines recommend screening patients for unhealthy behaviors and mental health concerns. Health risk assessments can systematically identify patient needs and trigger care. This study seeks to evaluate whether primary care practices can routinely implement such assessments into routine care. METHODS: As part of a cluster-randomized pragmatic trial, 9 diverse primary care practices implemented My Own Health Report (MOHR)-an electronic or paper-based health behavior and mental health assessment and feedback system paired with counseling and goal setting. We observed how practices integrated MOHR into their workflows, what additional practice staff time it required, and what percentage of patients completed a MOHR assessment (Reach). RESULTS: Most practices approached (60%) agreed to adopt MOHR. How they implemented MOHR depended on practice resources, informatics capacity, and patient characteristics. Three practices mailed patients invitations to complete MOHR on the Web, 1 called patients and completed MOHR over the telephone, 1 had patients complete MOHR on paper in the office, and 4 had staff help patients complete MOHR on the Web in the office. Overall, 3,591 patients were approached and 1,782 completed MOHR (Reach = 49.6%). Reach varied by implementation strategy with higher reach when MOHR was completed by staff than by patients (71.2% vs 30.2%, P <.001). No practices were able to sustain the complete MOHR assessment without adaptations after study completion. Fielding MOHR increased staff and clinician time an average of 28 minutes per visit. CONCLUSIONS: Primary care practices can implement health behavior and mental health assessments, but counseling patients effectively requires effort. Practices will need more support to implement and sustain assessments.


Subject(s)
Health Behavior , Mental Disorders/diagnosis , Mental Health , Primary Health Care/methods , Primary Health Care/statistics & numerical data , Feasibility Studies , Humans , Internet , Interviews as Topic/statistics & numerical data , Primary Health Care/organization & administration , Risk Assessment/methods , Risk Assessment/organization & administration , Risk Assessment/statistics & numerical data , Surveys and Questionnaires/statistics & numerical data
18.
J Community Genet ; 5(2): 99-108, 2014 Apr.
Article in English | MEDLINE | ID: mdl-23703702

ABSTRACT

There is consensus internationally that research participants should be offered the opportunity to receive clinically relevant genetic information identified through research, but there is little empirical peer-reviewed work documenting this process. We report the experience of conducting genetic research with nearly 35,000 participants in the Colon Cancer Family Registry, based in the USA, Canada, Australia, and New Zealand. Investigators from six multinational sites provided information about disclosure protocols, implementation, and uptake of genetic results and made suggestions to inform practice. Across 5 of the 6 registry sites, 1,634 participants in families with mismatch repair or MutYH gene mutations have been offered results. Participant uptake ranged from 56 to 86 %. Researchers faced significant challenges in the effort to return results. We offer suggestions in five key areas: (1) planning for the disclosure process, (2) participant information, (3) autonomy of participants, (4) monitoring scientific progress, and (5) involvement of stakeholders. Despite increasing discussion of the importance of returning incidental findings from genetic research, this paper highlights the considerable diversity, challenges, and costs faced in practice when returning expected findings with established utility and validity. We argue that more work is needed to ensure that genetic results in research are optimally managed.

19.
J Community Genet ; 5(2): 89-98, 2014 Apr.
Article in English | MEDLINE | ID: mdl-23934762

ABSTRACT

Breast cancer is a significant health concern for African American women. Nonetheless, uptake of genetic risk assessment (including both genetic counseling and testing) for breast cancer gene mutations among these populations remains low. This paper systematically reviews cognitive (i.e., beliefs) and affective (i.e., emotions) factors influencing BRCA1/2 genetic risk assessment among African American women as well as psychosocial interventions to facilitate informed decision making in this population. A systematic search of CINAHL, PubMed, and PsycINFO was undertaken, yielding 112 published studies. Of these, 18 met the eligibility criteria. African American woman are likely to participate in genetic risk assessment if they are knowledgeable about cancer genetics, perceive a high risk of developing breast cancer, have low expectancies of stigmatization from medical professionals, view themselves as independent from family, and have fatalistic beliefs and a future temporal orientation. Anticipated negative affective responses, such as an inability to "handle" the results of testing, are barriers to uptake. Specific perceptions, beliefs, and emotional factors are associated with genetic risk assessment among African American women. Understanding these factors is key in the development of interventions to facilitate informed decision making in this population.

20.
Implement Sci ; 8: 73, 2013 Jun 25.
Article in English | MEDLINE | ID: mdl-23799943

ABSTRACT

BACKGROUND: There is a pressing need for greater attention to patient-centered health behavior and psychosocial issues in primary care, and for practical tools, study designs and results of clinical and policy relevance. Our goal is to design a scientifically rigorous and valid pragmatic trial to test whether primary care practices can systematically implement the collection of patient-reported information and provide patients needed advice, goal setting, and counseling in response. METHODS: This manuscript reports on the iterative design of the My Own Health Report (MOHR) study, a cluster randomized delayed intervention trial. Nine pairs of diverse primary care practices will be randomized to early or delayed intervention four months later. The intervention consists of fielding the MOHR assessment--addresses 10 domains of health behaviors and psychosocial issues--and subsequent provision of needed counseling and support for patients presenting for wellness or chronic care. As a pragmatic participatory trial, stakeholder groups including practice partners and patients have been engaged throughout the study design to account for local resources and characteristics. Participatory tasks include identifying MOHR assessment content, refining the study design, providing input on outcomes measures, and designing the implementation workflow. Study outcomes include the intervention reach (percent of patients offered and completing the MOHR assessment), effectiveness (patients reporting being asked about topics, setting change goals, and receiving assistance in early versus delayed intervention practices), contextual factors influencing outcomes, and intervention costs. DISCUSSION: The MOHR study shows how a participatory design can be used to promote the consistent collection and use of patient-reported health behavior and psychosocial assessments in a broad range of primary care settings. While pragmatic in nature, the study design will allow valid comparisons to answer the posed research question, and findings will be broadly generalizable to a range of primary care settings. Per the pragmatic explanatory continuum indicator summary (PRECIS) framework, the study design is substantially more pragmatic than other published trials. The methods and findings should be of interest to researchers, practitioners, and policy makers attempting to make healthcare more patient-centered and relevant. TRIAL REGISTRATION: Clinicaltrials.gov: NCT01825746.


Subject(s)
Health Behavior , Patient-Centered Care/methods , Pragmatic Clinical Trials as Topic/methods , Primary Health Care/organization & administration , Cluster Analysis , Costs and Cost Analysis , Data Collection , Electronic Health Records , Feasibility Studies , Humans , Interprofessional Relations , Mental Health , Patient-Centered Care/economics , Pragmatic Clinical Trials as Topic/economics , Self Report
SELECTION OF CITATIONS
SEARCH DETAIL
...