Publications by authors named "Deborah J Bowen"

243 Publications

Patient Decision Aid Selection for Shared Decision Making: A Multicase Qualitative Study.

Med Care Res Rev 2021 May 6:10775587211012995. Epub 2021 May 6.

University of Washington, Seattle, WA, USA.

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.
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http://dx.doi.org/10.1177/10775587211012995DOI Listing
May 2021

Community health worker-delivered weight management intervention among public housing residents: A feasibility study.

Prev Med Rep 2021 Jun 16;22:101360. Epub 2021 Mar 16.

Department of Bioethics and Humanities, University of Washington, United States.

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.
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http://dx.doi.org/10.1016/j.pmedr.2021.101360DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8008178PMC
June 2021

Utility of a virtual counselor (VICKY) to collect family health histories among vulnerable patient populations: A randomized controlled trial.

Patient Educ Couns 2021 May 18;104(5):979-988. Epub 2021 Feb 18.

Khoury College of Computer Sciences, Northeastern University, Boston, MA, USA.

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.
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http://dx.doi.org/10.1016/j.pec.2021.02.034DOI Listing
May 2021

The Role of Stress in Breast Cancer Incidence: Risk Factors, Interventions, and Directions for the Future.

Int J Environ Res Public Health 2021 02 15;18(4). Epub 2021 Feb 15.

Department of Social and Behavioral Sciences, Harvard University, Boston, MA 02138, USA.

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.
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http://dx.doi.org/10.3390/ijerph18041871DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7918955PMC
February 2021

The FamilyTalk randomized controlled trial: patient-reported outcomes in clinical genetic sequencing for colorectal cancer.

Cancer Causes Control 2021 May 16;32(5):483-492. Epub 2021 Feb 16.

Departments of Medicine (Medical Genetics) and Genome Sciences, University of Washington Medical Center, Seattle, WA, USA.

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.
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http://dx.doi.org/10.1007/s10552-021-01398-1DOI Listing
May 2021

What improves the likelihood of people receiving genetic test results communicating to their families about genetic risk?

Patient Educ Couns 2021 Apr 7;104(4):726-731. Epub 2021 Jan 7.

Departments of Medicine (Medical Genetics) and Genome Sciences, University of Washington Medical Center, Seattle, USA.

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.
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http://dx.doi.org/10.1016/j.pec.2021.01.001DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8005444PMC
April 2021

Design of a study to implement population-based risk assessment for hereditary cancer genetic testing in primary care.

Contemp Clin Trials 2021 Feb 26;101:106257. Epub 2020 Dec 26.

University of Washington, 1959 NE Pacific St, Box 357120, Seattle, WA 98195, USA. Electronic address:

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.
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http://dx.doi.org/10.1016/j.cct.2020.106257DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8075171PMC
February 2021

Care manager perspectives on integrating an mHealth app system into clinical workflows: A mixed methods study.

Gen Hosp Psychiatry 2021 Jan-Feb;68:38-45. Epub 2020 Oct 17.

University of Washington, Department of Psychiatry and Behavioral Sciences, USA.

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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http://dx.doi.org/10.1016/j.genhosppsych.2020.10.004DOI Listing
October 2020

Community partners' responses to items assessing stakeholder engagement: Cognitive response testing in measure development.

PLoS One 2020 23;15(11):e0241839. Epub 2020 Nov 23.

New York University, School of Global Public Health, New York, NY, United States of America.

Background: Despite recognition of the importance of stakeholder input into research, there is a lack of validated measures to assess how well constituencies are engaged and their input integrated into research design. Measurement theory suggests that a community engagement measure should use clear and simple language and capture important components of underlying constructs, resulting in a valid measure that is accessible to a broad audience.

Objective: The primary objective of this study was to evaluate how community members understood and responded to a measure of community engagement developed to be reliable, valid, easily administered, and broadly usable.

Method: Cognitive response interviews were completed, during which participants described their reactions to items and how they processed them. Participants were asked to interpret item meaning, paraphrase items, and identify difficult or problematic terms and phrases, as well as provide any concerns with response options while responding to 16 of 32 survey items.

Results: The results of the cognitive response interviews of participants (N = 16) suggest concerns about plain language and literacy, clarity of question focus, and the lack of context clues to facilitate processing in response to items querying research experience. Minimal concerns were related to response options. Participants suggested changes in words and terms, as well as item structure.

Conclusion: Qualitative research can improve the validity and accessibility of measures that assess stakeholder experience of community-engaged research. The findings suggest wording and sentence structure changes that improve ability to assess implementation of community engagement and its impact on research outcomes.
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http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0241839PLOS
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7682898PMC
January 2021

A special issue addressing healthful food access and food insecurity: risk factors, behavioral variables, interventions, and measurement.

Transl Behav Med 2020 12;10(6):1249-1254

Gretchen Swanson Center for Nutrition, Omaha, NE.

This article introduces a special issue in Translational Behavioral Medicine that focuses on translational aspects of food insecurity research. The purpose of this special issue was to add to the evidence base to inform short- and intermediate-term intervention development and implementation and to spark additional future discourse around these important topics. The special issue included 12 articles and 2 commentaries roughly evenly split across four topic areas, including subpopulation food insecurity risk factors; food behaviors and psychosocial variables; implementation and/or evaluation of food insecurity interventions; and food insecurity-related measurement issues. The articles in this special issue offer a number of contributions to the translational literature specific to food insecurity. They add to our understanding that depression, stress, and social isolation (sometimes related to language barriers) may play a large role in individuals' food insecurity experience. The articles explored the differences between food insecure and food secure households in relation to food and grocery shopping behaviors, and nutritional self-efficacy. In addition, authors described the implementation and/or efficacy of interventions meant to promote healthful diets and food access among food insecure populations. And finally, several studies explored current measurement issues such as intra-household subjectivity, disconnect between perceived and objective measures of food access, and a need for more holistic and nutrition-focused measurement approaches. While there are deeper systemic factors driving food insecurity, the findings provided in this special issue can help guide those addressing the current challenges faced by food insecure households that struggle to achieve healthful diets.
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http://dx.doi.org/10.1093/tbm/ibaa119DOI Listing
December 2020

Risk Ladder, Table, or Bulleted List? Identifying Formats That Effectively Communicate Personalized Risk and Risk Reduction Information for Multiple Diseases.

Med Decis Making 2021 01 26;41(1):74-88. Epub 2020 Oct 26.

Department of Surgery, Division of Public Health Sciences, Washington University in St. Louis, Saint Louis, MO, USA.

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 ( = 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 ( = 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 ( > 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 ( = 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.
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http://dx.doi.org/10.1177/0272989X20968070DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7772263PMC
January 2021

Psychiatrist and Psychologist Experiences with Telehealth and Remote Collaborative Care in Primary Care: A Qualitative Study.

J Rural Health 2020 Oct 6. Epub 2020 Oct 6.

Department of Psychiatry and Behavioral Sciences, University of Washington School of Medicine, Seattle, Washington.

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.
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http://dx.doi.org/10.1111/jrh.12523DOI Listing
October 2020

Introduction to the special series: translating behavioral medicine research to prevent and control the spread of COVID-19.

Transl Behav Med 2020 10;10(4):817-818

Georgetown Lombardi Comprehensive Cancer Center, Georgetown University Medical Center, Washington, DC, USA.

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http://dx.doi.org/10.1093/tbm/ibaa093DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7543073PMC
October 2020

What is successful aging in lesbian and bisexual women? Application of the aging-well model.

J Gerontol B Psychol Sci Soc Sci 2020 Aug 22. Epub 2020 Aug 22.

Department of Bioethics and Humanities, University of Washington.

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.

Methods: Data were from the Women's Health Initiative (N = 15691; heterosexual n = 15002, 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 (OR 1.59, 95%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 .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.
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http://dx.doi.org/10.1093/geronb/gbaa130DOI Listing
August 2020

Beliefs and Values About Gene Therapy and In-Utero Gene Editing in Patients with Hemophilia and Their Relatives.

Patient 2020 10;13(5):633-642

Public Health Genetics, University of Washington, Seattle, WA, USA.

Aim: Hemophilia is an inherited disease for which current treatment is noncurative. While gene therapy and gene editing are being researched, we do not know how the hemophilia community perceives them. Herein, we explore the beliefs and values regarding these new therapies in patients with hemophilia and their relatives.

Methods: This qualitative study used phone-based semi-structured interviews on 21 adult English-speaking patients with hemophilia A or B and their parents across the United States during March to July 2019. The study was advertised through different chapters of the Hemophilia Foundation. The interview guide included questions about participants' prior experience with hemophilia, and included two case scenarios about the use of gene therapy and in utero gene editing, after which participants were asked about their opinions, beliefs, and values on each scenario. We used a grounded theory approach and identified the main themes using an inductive process.

Results: We interviewed 21 participants-12 patients and 9 mothers. Most of them had or were related to a patient with severe disease. The main themes discussed were related to efficacy, safety and financial concerns and insurance coverage for both gene therapy and in utero gene editing. Patients and their parents had expected outcomes in terms of durability of therapy and impact on emotional health and lifestyle changes in the long term. Gene therapy was more accepted among patients with severe and uncontrolled disease. In-utero gene editing was not completely accepted because of safety and ethical issues.

Conclusion: Patients with severe hemophilia perceive gene therapy as a potential cure, while gene editing was more controversial. Patients still have questions that remain to be answered regarding safety and efficacy that should be assessed with long-term follow up studies.
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http://dx.doi.org/10.1007/s40271-020-00442-7DOI Listing
October 2020

Rural clinics implementing collaborative care for low-income patients can achieve comparable or better depression outcomes.

Fam Syst Health 2020 Sep 23;38(3):242-254. Epub 2020 Jul 23.

Department of Psychiatry and Behavioral Sciences.

Introduction: The gap between depression treatment needs and the available mental health workforce is particularly large in rural areas. Collaborative care (CoCM) is an evidence-based approach that leverages limited mental health specialists for maximum population effect. This study evaluates depression treatment outcomes, clinical processes of care, and primary care provider experiences for CoCM implementation in 8 rural clinics treating low-income patients.

Method: We used CoCM registry data to analyze depression response and remission then used logistic regression to model variance in depression outcomes. Primary care providers reported their experiences with this practice change 18 months following program launch.

Results: Participating clinics enrolled 5,187 adult patients, approximately 15% of the adult patient population. Mean PHQ-9 depression score was 16.1 at baseline and 10.9 at last individual measurement, a statistically and clinically significant improvement (SD6.7; 95% CI [4.9, 5.3]). Suicidal ideation also reduced significantly. Multivariate logistic regression predicted the probability of depression response and remission after controlling for several demographic attributes and processes of care, showing a significant amount of variance in outcomes could be explained by clinic, length of time in treatment, and age. Primary care providers reported positive experiences overall.

Discussion: Three quarters of participating primary care clinics, adapting CoCM for limited resource settings, exceeded depression response outcomes reported in a controlled research trial and mirrored results of large-scale quality improvement implementations. Future research should examine quality improvement strategies to address clinic-level variation and sustain improvements in clinical outcomes achieved. (PsycInfo Database Record (c) 2020 APA, all rights reserved).
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http://dx.doi.org/10.1037/fsh0000522DOI Listing
September 2020

Integrated behavioral health treatments: innovations to achieve population impact.

Transl Behav Med 2020 08;10(3):520-526

Department of Psychiatry and Behavioral Sciences, University of Washington, Seattle, WA, USA.

Translational Behavioral Medicine is a journal that brings together relevant scholars and practitioners to produce articles of scientific and practical significance in a variety of fields. Here, we published a call for manuscripts detailing the study of innovations in the field of implementation of integrated care in the USA. We present 13 articles, all peer reviewed and all targeting some aspect of integrated care implementation. These articles include medical and community-based settings, as well as interventions that effectively engage peers, family members, and other social systems to support and extend care. The behavioral health conditions of interest include but were not limited to those that carry the greatest population disease burdens: depression, posttraumatic stress disorder, bipolar disorder, anxiety disorders, and substance abuse disorders. Examples of cross-cutting issues of high interest include research focused on provider and system barriers to integrated care implementation, interventions to improve the use of innovative treatments, disparities in access to care and quality of treatment, the intersection of behavioral health disorders and complex chronic conditions as it affects regimen adherence, health services organization and quality of care, policy effects, innovative methods using health information and mHealth technologies, and personalized/precision medicine. This introduction briefly summarizes some of the relevant topics and background literature. We close with an eye toward future research activities that will continue to advance the field and offer directions to stimulate new research questions in the area.
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http://dx.doi.org/10.1093/tbm/ibaa059DOI Listing
August 2020

Sexual Orientation Identity Disparities in Mammography Among White, Black, and Latina U.S. Women.

LGBT Health 2020 Jul 13. Epub 2020 Jul 13.

Division of Adolescent and Young Adult Medicine, Boston Children's Hospital, Boston, Massachusetts, USA.

Our goal was to examine sexual orientation identity disparities in mammography in relationship to race/ethnicity among U.S. women. Using nationally representative 2013-2017 National Health Interview Survey data, we used multivariable logistic regression to estimate the odds of receiving a mammogram in the past year in relationship to sexual orientation identity among White, Black, and Latina U.S. women 40-75 years of age ( = 45,031) separately, adjusting for demographic factors. We also assessed whether socioeconomic and health care factors attenuated sexual orientation identity disparities in mammography across racial/ethnic groups. Among White women, bisexual women had significantly lower adjusted odds of mammography compared to heterosexual women (odds ratio = 0.70, 95% confidence interval: 0.50-0.99). Among Black women, the adjusted odds of mammography were significantly higher among bisexual women relative to heterosexual women (2.53, 1.08-5.92). Black lesbian women appeared to have lower adjusted odds of mammography compared to their heterosexual counterparts; however, this difference was not statistically significant (0.80, 0.46-1.38). Similarly, among Latina women, lesbian women also seemed to have lower adjusted odds of mammography relative to heterosexual women, but this disparity was also not statistically significant (0.64, 0.37-1.13). Adding socioeconomic factors completely attenuated the disparity between White bisexual and heterosexual women (0.76, 0.52-1.10). Sexual orientation identity disparities in receiving a mammogram in the past year differed in relationship to race/ethnicity among White, Black, and Latina U.S. women. Additional research with larger samples of Black and Latina lesbian and bisexual women is needed to more accurately estimate and explain observed differences.
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http://dx.doi.org/10.1089/lgbt.2020.0039DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7475089PMC
July 2020

Relationship between genetic knowledge and familial communication of CRC risk and intent to communicate CRCP genetic information: insights from FamilyTalk eMERGE III.

Transl Behav Med 2021 Mar;11(2):563-572

Departments of Medicine (Medical Genetics) and Genome Sciences, University of Washington Medical Center, Seattle, WA, USA.

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 (β = 0.01, p = .58). Greater current communication of CRC risk was associated with better family functioning (β = 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.
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http://dx.doi.org/10.1093/tbm/ibaa054DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7963296PMC
March 2021

Strategies of community engagement in research: definitions and classifications.

Transl Behav Med 2021 Mar;11(2):441-451

New York University, School of Global Public Health, New York, NY, USA.

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.
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http://dx.doi.org/10.1093/tbm/ibaa042DOI Listing
March 2021

Understanding the Return of Genomic Sequencing Results Process: Content Review of Participant Summary Letters in the eMERGE Research Network.

J Pers Med 2020 May 13;10(2). Epub 2020 May 13.

Genomic Medicine Institute, Geisinger, Danville, PA 17822, USA.

A challenge in returning genomic test results to research participants is how best to communicate complex and clinically nuanced findings to participants in a manner that is scalable to the large numbers of participants enrolled. The purpose of this study was to examine the features of genetic results letters produced at each Electronic Medical Records and Genomics (eMERGE3) Network site to assess their readability and content. Letters were collected from each site, and a qualitative analysis of letter content and a quantitative analysis of readability statistics were performed. Because letters were produced independently at each eMERGE site, significant heterogeneity in readability and content was found. The content of letters varied widely from a baseline of notifying participants that results existed to more detailed information about positive or negative results, as well as materials for sharing with family members. Most letters were significantly above the Centers for Disease Control-suggested reading level for health communication. While continued effort should be applied to make letters easier to understand, the ongoing challenge of explaining complex genomic information, the implications of negative test results, and the uncertainty that comes with some types of test and result makes simplifying letter text challenging.
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http://dx.doi.org/10.3390/jpm10020038DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7354464PMC
May 2020

Reaching Consensus on Principles of Stakeholder Engagement in Research.

Prog Community Health Partnersh 2020 ;14(1):117-127

Background: Stakeholder-engaged research is an umbrella term for the types of research that have community, patient, and/or stakeholder engagement, feedback, and bidirectional communication as approaches used in the research process. The level of stakeholder engagement across studies can vary greatly, from minimal engagement to fully collaborative partnerships.

Objectives: To present the process of reaching consensus among stakeholder and academic experts on the stakeholder engagement principles (EPs) and to identify definitions for each principle.

Methods: We convened 19 national experts, 18 of whom remained engaged in a five-round Delphi process. The Delphi panel consisted of a broad range of stakeholders (e.g., patients, caregivers, advocacy groups, clinicians, researchers). We used web-based surveys for most rounds (1-3 and 5) and an in-person meeting for round 4. Panelists evaluated EP titles and definitions with a goal of reaching consensus (>80% agreement). Panelists' comments guided modifications, with greater weight given to non-academic stakeholder input.

Conclusions: EP titles and definitions were modified over five Delphi rounds. The panel reached consensus on eight EPs (dropping four, modifying four, and adding one) and corresponding definitions. The Delphi process allowed for a stakeholder-engaged approach to methodological research. Stakeholder engagement in research is time consuming and requires greater effort but may yield a better, more relevant outcome than more traditional scientist-only processes. This stakeholder-engaged process of reaching consensus on EPs and definitions provides a key initial step for the content validation of a survey tool to examine the level of stakeholder engagement in research studies.
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http://dx.doi.org/10.1353/cpr.2020.0014DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7867997PMC
February 2021

Perceptions of risk and reward in BRCA1 and BRCA2 mutation carriers choosing salpingectomy for ovarian cancer prevention.

Fam Cancer 2020 04 24;19(2):143-151. Epub 2020 Feb 24.

Division of Gynecologic Oncology, Department of Obstetrics and Gynecology, University of Washington, 1959 NE Pacific St, Box 356460, Seattle, WA, 98195-6460, USA.

Salpingectomy with interval oophorectomy has gained traction as an ovarian cancer prevention strategy, but is not currently recommended for high risk women. Nevertheless, some choose this approach. We aimed to understand risk perception and plans for oophorectomy in BRCA1 and BRCA2 (BRCA) mutation carriers choosing salpingectomy for ovarian cancer prevention. This was a longitudinal survey study of BRCA mutation carriers who underwent bilateral salpingectomy to reduce ovarian cancer risk. An initial written questionnaire and telephone interview was followed by annual phone interviews. 22 women with BRCA mutations were enrolled. Median follow-up was three years. The median age at salpingectomy was 39.5 years (range 27-49). Perceived lifetime ovarian cancer risk decreased by half after salpingectomy (median risk reduction 25%, range 0-40%). At final follow-up, five (22.7%) had undergone oophorectomy and five women (22.7%) were not planning to undergo completion oophorectomy. BRCA mutation carriers who had salpingectomy after the recommended age of prophylactic surgery (vs. before the recommended age) were less likely to plan for future oophorectomy (28.6% vs. 66.7%, p = 0.037). All women were satisfied with their decision to undergo salpingectomy with eighteen (81.8%) expressing decreased cancer-related worry. There were no diagnoses of ovarian cancer during our study period. In conclusion, most BRCA mutation carriers undergoing risk-reducing salpingectomy are satisfied with their decision and have lower risk perception after salpingectomy, though some older mutation carriers did not plan on future oophorectomy. Salpingectomy with delayed oophorectomy in BRCA mutation carriers remains investigational and should preferably be performed within a clinical trial to prevent introduction of an innovation before safety has been proven.
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http://dx.doi.org/10.1007/s10689-020-00166-5DOI Listing
April 2020

Implementing collaborative care to reduce depression for rural native American/Alaska native people.

BMC Health Serv Res 2020 Jan 13;20(1):34. Epub 2020 Jan 13.

University of Washington, A204, 1959 NE Pacific Street, Seattle, WA, 98195, USA.

Background: The purpose of this study was to identify the effects of Collaborative Care on rural Native American and Alaska Native (AI/AN) patients.

Methods: Collaborative Care was implemented in three AI/AN serving clinics. Clinic staff participated in training and coaching designed to facilitate practice change. We followed clinics for 2 years to observe improvements in depression treatment and to examine treatment outcomes for enrolled patients. Collaborative Care elements included universal screening for depression, evidence-based treatment to target, use of behavioral health care managers to deliver the intervention, use of psychiatric consultants to provide caseload consultation, and quality improvement tracking to improve and maintain outcomes. We used t-tests to evaluate the main effects of Collaborative Care and used multiple linear regression to better understand the predictors of success. We also collected qualitative data from members of the Collaborative Care clinical team about their experience.

Results: The clinics participated in training and practice coaching to implement Collaborative Care for depressed patients. Depression response (50% or greater reduction in depression symptoms as measured by the PHQ-9) and remission (PHQ-9 score less than 5) rates were equivalent in AI/AN patients as compared with White patients in the same clinics. Significant predictors of positive treatment outcome include only one depression treatment episodes during the study and more follow-up visits per patient. Clinicians were overall positive about their experience and the effect on patient care in their clinic.

Conclusions: This project showed that it is possible to deliver Collaborative Care to AI/AN patients via primary care settings in rural areas.
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http://dx.doi.org/10.1186/s12913-019-4875-6DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6958691PMC
January 2020

Exploring relatives' perceptions of participation, ethics, and communication in a patient-driven study for hereditary cancer variant reclassification.

J Genet Couns 2020 10 9;29(5):857-866. Epub 2020 Jan 9.

Department of Laboratory Medicine, University of Washington, Seattle, WA, USA.

Effective communication of genetic information within families depends on several factors. Few studies explore intra-familial communication of variant of uncertain significance (VUS) results or active collaboration between family members to classify VUS. Our qualitative study aimed to describe the experiences of individuals asked by family members to participate in the FindMyVariant study, a patient-driven family study which aimed to reclassify a clinically identified familial VUS in a hereditary cancer gene. We collected feedback from 56 individuals from 21 different families through phone interviews and written correspondence, transcribed the interviews, and performed thematic analysis on all text. We describe themes from three main topics: participation, ethical considerations, and study impacts. Participation in the FindMyVariant study, defined as returning a sample for targeted genotyping, was motivated by convenience and a desire to help the family, oneself, and science. Relatives were generally responsive to invitations to participate in FindMyVariant from another family member. Those who declined to participate did so due to concerns about research program confidentiality rather than family dynamics. No major ethical issues arose in response to the patient-driven study structure, and no major changes in stress and anxiety, medical care, or behavior occurred. Participation in patient-driven familial VUS classification studies has a neutral or positive impact on family health communication. While it is important to design studies to minimize familial coercion, intra-familial confidentiality breaches, and misinterpretation of genetic results, these were not major concerns among relatives in this study. Clinicians and laboratories may consider encouraging familial communication about genetic variants using family members as liaisons.
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http://dx.doi.org/10.1002/jgc4.1215DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7343600PMC
October 2020

Designing and Evaluating a Digital Family Health History Tool for Spanish Speakers.

Int J Environ Res Public Health 2019 12 7;16(24). Epub 2019 Dec 7.

Department of Community Health Sciences, Boston University School of Public Health, Boston, MA 02118, USA.

Digital family health history tools have been developed but few have been tested with non-English speakers and evaluated for acceptability and usability. This study describes the cultural and linguistic adaptation and evaluation of a family health history tool (VICKY: VIrtual Counselor for Knowing Your Family History) for Spanish speakers. In-depth interviews were conducted with 56 Spanish-speaking participants; a subset of 30 also participated in a qualitative component to evaluate the acceptability and usability of Spanish VICKY. Overall, agreement in family history assessment was moderate between VICKY and a genetic counselor (weighted kappa range: 0.4695 for stroke-0.6615 for heart disease), although this varied across disease subtypes. Participants felt comfortable using VICKY and noted that VICKY was very likeable and possessed human-like characteristics. They reported that VICKY was very easy to navigate, felt that the instructions were very clear, and thought that the time it took to use the tool was just right. Spanish VICKY may be useful as a tool to collect family health history and was viewed as acceptable and usable. The study results shed light on some cultural differences that may influence interactions with family history tools and inform future research aimed at designing and testing culturally and linguistically diverse digital systems.
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http://dx.doi.org/10.3390/ijerph16244979DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6950582PMC
December 2019

Patient-reported outcomes in the Translational Breast Cancer Research Consortium.

Cancer 2020 03 19;126(5):922-930. Epub 2019 Nov 19.

Sidney Kimmel Comprehensive Cancer Center, Johns Hopkins University, Baltimore, Maryland.

Members of the Translational Breast Cancer Research Consortium conducted an expert-driven literature review to identify a list of domains and to evaluate potential measures of these domains for inclusion in a list of preferred measures. Measures were included if they were easily available, free of charge, and had acceptable psychometrics based on published peer-reviewed analyses. A total of 22 domains and 52 measures were identified during the selection process. Taken together, these measures form a reliable and validated list of measurement tools that are easily available and used in multiple cancer trials to assess patient-reported outcomes in relevant patients.
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http://dx.doi.org/10.1002/cncr.32615DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7063688PMC
March 2020

Impact of the Affordable Care Act on human papillomavirus vaccination initiation among lesbian, bisexual, and heterosexual U.S. women.

Health Serv Res 2020 02 10;55(1):18-25. Epub 2019 Nov 10.

Department of Social and Behavioral Sciences, Harvard T.H. Chan School of Public Health, Boston, Massachusetts.

Objective: To examine the effect of the 2010 Affordable Care Act (ACA) extended dependent coverage and no cost-sharing provisions on human papillomavirus (HPV) vaccination in relation to sexual orientation identity among U.S. women.

Data Sources: 2006-2010 and 2011-2015 National Survey of Family Growth.

Study Design: We used an interrupted time series design and multivariable Poisson regression to assess differences in HPV vaccination initiation before (2007-2010) and after (2011-2015) the 2010 ACA provisions among heterosexual, bisexual, and lesbian U.S. women aged 15-25 years (N = 7033), adjusting for temporal trends and demographic factors.

Data Collection: Computer-assisted personal interview and audio computer-assisted self-interview questionnaires.

Principal Findings: The adjusted prevalence of HPV vaccination initiation was significantly higher among lesbian and bisexual women after compared to before the 2010 ACA-at 19.1 (95% confidence interval [CI]: 5.4, 32.9) and 15.7 (95% CI: 4.4, 27.1) percentage points in 2015 compared to 2007-2010, respectively. We observed no association between the 2010 ACA provisions and HPV vaccination initiation among heterosexual women after adjusting for temporal trends and demographic factors.

Conclusions: The 2010 ACA provisions may have improved HPV vaccination initiation among lesbian and bisexual women. Policies and programs that increase access to health insurance and provide HPV vaccines at no cost to patients may facilitate HPV vaccine uptake in these marginalized populations.
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http://dx.doi.org/10.1111/1475-6773.13231DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6980951PMC
February 2020

Environmental, social, and economic factors related to the intersection of food security, dietary quality, and obesity: an introduction to a special issue of the Translational Behavioral Medicine journal.

Transl Behav Med 2019 10;9(5):823-826

Gretchen Swanson Center for Nutrition, Omaha, NE, USA.

This special issue of Translational Behavioral Medicine solicited papers focusing on the intersection of food security, dietary quality, and obesity. Specifically, the special issue seeks to highlight research that provides actionable takeaways related to policy, systems, and environmental (PSE) approaches for practitioners and policymakers. The purpose of this introduction was to summarize relevant background literature and then briefly introduce topics covered by the articles included in the special issue. There are economic, environmental, and social factors that create systemic barriers that drive persistent poverty in communities and underlay the intersection of food security, dietary quality, and obesity. Although equitable healthful food access is needed, the issue is exceedingly complicated. Understanding and operationalizing effective and efficient PSE approaches is in its infancy. More research is needed to better understand how to appropriately measure determinants of health (and how they relate to the conditions that ultimately promote obesity through food insecurity and compromises to dietary quality), implement deliberate interventions that address the underlying factors, and disseminate that information to policymakers and practitioners in the field. This special issue of Translational Behavioral Medicine includes articles that relay practical findings, measurement methods, and lessons learned related to PSE approaches such as federal food assistance programs (e.g., National School Lunch Program), systems-based interventions (e.g., clinic-community connections), and environmental modifications(e.g., food retail marketing). Although much more practical and action-oriented research is needed in this area, these articles will contribute to the evidence base supporting better future assessment and PSE interventions that address food security, dietary quality, and obesity.
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http://dx.doi.org/10.1093/tbm/ibz097DOI Listing
October 2019