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1.
Support Care Cancer ; 31(12): 689, 2023 Nov 11.
Article in English | MEDLINE | ID: mdl-37950073

ABSTRACT

PURPOSE: While cancer treatment advancements have increased the number of reproductive-aged women survivors, they can harm reproductive function. Despite national guidelines, oncofertility service uptake remains low. This review explores interventions for fertility preservation alignment with American Society of Clinical Oncology (ASCO) guidelines and consideration of a multilevel framework. METHODS: We systematically reviewed literature from 2006 to 2022 across four databases. Identified interventions were assessed and scored for quality based on CONSORT and TREND statement checklists. Results were synthesized to assess for intervention alignment with ASCO guidelines and four multilevel intervention framework characteristics: targeted levels of influence, conceptual clarity, methodologic pragmatism, and sustainability. RESULTS: Of 407 articles identified, this review includes nine unique interventions. The average quality score was 7.7 out of 11. No intervention was guided by theory. Per ASCO guidelines, most (n=8) interventions included provider-led discussions of treatment-impaired fertility. Fewer noted discussions on fertility preservation approaches (n=5) and specified discussion timing (n=4). Most (n=8) referred patients to reproductive specialists, and few (n=2) included psychosocial service referrals. Most (n=8) were multilevel, with five targeting three levels of influence. Despite targeting multiple levels, all analyses were conducted at the individual level. Intervention strategies included: educational components (n=5), decision aids (n=2), and nurse navigators (n=2). Five interventions considered stakeholders' views. All interventions were implemented in real-world contexts, and only three discussed sustainability. CONCLUSIONS: This review identifies key gaps in ASCO guideline-concordant fertility preservation that could be filled by updating and adhering to standardized clinical practice guidelines and considering multilevel implementation frameworks elements.


Subject(s)
Fertility Preservation , Neoplasms , Humans , Female , Adult , Fertility Preservation/methods , Neoplasms/therapy , Neoplasms/psychology , Reproduction , Survivors
4.
J Community Genet ; 14(6): 593-603, 2023 Dec.
Article in English | MEDLINE | ID: mdl-37648941

ABSTRACT

Promoting family communication about inherited disease risk is an arena in which family systems theory is highly relevant. One family systems' construct that can support promotion of family communication regarding inherited disease risk is the notion of "kin keeping." However, kin keeping and whether it might be capitalized on to encourage family communication about inherited risk has been understudied. The goal of this report was to propose a broadened conceptualization of kin keeping that distinguishes between a structural functional perspective (role conceptualization) and transitional behaviors (skill conceptualization), and to develop and evaluate a scale that would enable this assertion to be tested among a sample of African American community health workers. We developed a scale using four steps: item development using concept analysis and content validity, scale development among a national sample (n = 312), scale evaluation using exploratory factor analysis (n = 52), and scale reduction. We then posed suppositions of associations that would indicate whether the developed kin keeping measure was assessing a specific family role or set of behaviors. Our results included the development of the first quantitative measure of kin keeping (9- and 15-item scales). Model fit for 9-item scale (CFI = 0.97, AFGI = 0.89, RMSEA = 0.09, SMRM = 0.06) and model fit for 15-item scale (CFI = 0.97, AFGI = 0.89, RMSEA = 0.06, SMRM = 0.05). These findings allow us to move toward more rigorous research about the role of kin keeping on information sharing and health decision making. Results also suggest that, contrary to the historical structural functional conceptualization of kin keeping as a role, kin keeping might also be conceptualized as a behavior or set of modifiable behaviors. Ultimately, the kin keeping scale could be used to operationalize kin keeping in various theoretical models and frameworks, guide intervention development to encourage or train for kin keeping behaviors, and test assumptions of whether families vary in the density of kin keeping.

5.
Public Health Genomics ; 26(1): 77-89, 2023.
Article in English | MEDLINE | ID: mdl-37487468

ABSTRACT

INTRODUCTION: Encouraging family communication about possible genetic risk has become among the most important avenues for achieving the full potential of genomic discovery for primary and secondary prevention. Yet, effective family-wide risk communication (i.e., conveying genetic risk status and its meaning for other family members) remains a critical gap in the field. We aim to describe the iterative process of developing a scalable population-based communication outreach intervention, Your Family Connects, to reach ovarian cancer survivors and close relatives to communicate the potential for inherited risk and to consider genetic counseling. METHODS: Relational-level theories (e.g., interdependence theory) suggest that interventions to promote family cancer risk communication will be most effective if they consider the qualities of specific relationships and activate motives to preserve the relationship. Informed by these theories, we collaborated with 14 citizen scientists (survivors of ovarian cancer or relatives) and collected 261 surveys and 39 structured interviews over 12 weeks of citizen science activities in 2020. RESULTS: The citizen science findings and consideration of relational-level theories informed the content and implementation of Your Family Connects (www.yourfamilyconnects.org). CS results showed survivors favor personal contact with close relatives, but relatives were open to alternative contact methods, such as through health professionals. Recognizing the need for varied approaches based on relationship dynamics, we implemented a relative contact menu to enable survivors identify at-risk relatives and provide multiple contact options (i.e., survivor contact, health professional contact, and delayed contact). In line with relational autonomy principles, we included pros and cons for each option, assisting survivors in choosing suitable contact methods for each relative. DISCUSSION: Our developed intervention represents a novel application of relational-level theories and partnership with citizen scientists to expand genetic services reach to increase the likelihood for fair distribution of cancer genomic advances. The Your Family Connects intervention as part of a randomized trial in collaboration with the Georgia Cancer Registry compared with standard outreach.


Subject(s)
Cancer Survivors , Ovarian Neoplasms , Humans , Female , Ovarian Neoplasms/genetics , Survivors , Genetic Counseling , Communication , Family
6.
Ann Behav Med ; 57(9): 696-707, 2023 08 21.
Article in English | MEDLINE | ID: mdl-37155576

ABSTRACT

BACKGROUND: The US Preventive Services Task Force does not recommend routine annual mammography screening for women aged 40-49 at average risk. Little research has been done to develop theory-based communication interventions to facilitate informed decision-making about reducing potentially low-value mammography screening. PURPOSE: Evaluate the effects of theory-based persuasive messages on women's willingness to consider delaying screening mammography until age 50 or have mammograms biennially. METHODS: We conducted a randomized controlled communication experiment online with a population-based sample of U.S. women aged 40-49 (N = 383) who screened to be at average risk for breast cancer. Women were randomly assigned to the following messaging summaries: annual mammography risks in 40s (Arm 1, n = 124), mammography risks plus family history-based genetic risk (Arm 2, n = 120), and mammography risks, genetic risk, and behavioral alternatives (Arm 3, n = 139). Willingness to delay screening or reduce screening frequency was assessed post-experiment by a set of 5-point Likert scale items. RESULTS: Women in Arm 3 reported significantly greater willingness to delay screening mammography until age 50 (mean = 0.23, SD = 1.26) compared with those in Arm 1 (mean = -0.17, SD = 1.20; p = .04). There were no significant arm differences in willingness to reduce screening frequency. Exposure to the communication messages significantly shifted women's breast cancer-related risk perceptions without increasing unwarranted cancer worry across all three arms. CONCLUSIONS: Providing women with screening information and options may help initiate challenging discussions with providers about potentially low-value screening.


The US Preventive Services Task Force does not recommend routine annual mammography screening for women aged 40­49 at average risk. This study aimed to assess the impact of theory-based persuasive messages on women's willingness to delay mammography screening until age 50 or opt for biennial screenings. In a randomized online experiment, 383 U.S. women aged 40­49 at average risk for breast cancer were assigned to three different message groups. The results showed that women exposed to messaging that included mammography risks, family history-based genetic risk, and behavioral alternatives were significantly more willing to delay screening until age 50. However, there were no significant differences in willingness to reduce screening frequency. The tested communication messages effectively shifted women's breast cancer-related risk perceptions without causing unnecessary worry. Providing women with screening information and options may help initiate challenging discussions with providers about potentially low-value screening.


Subject(s)
Breast Neoplasms , Female , Humans , Breast Neoplasms/diagnostic imaging , Breast Neoplasms/prevention & control , Mammography , Early Detection of Cancer , Risk Factors , Mass Screening
7.
Public Health Genomics ; 26(1): 68-76, 2023.
Article in English | MEDLINE | ID: mdl-37231974

ABSTRACT

INTRODUCTION: Engaging youth as peer educators has yet to be considered to promote literacy concerning conjoint genetic and environmental (G × E) influences on health conditions. Whether youth living in low- and middle-income countries (LMICs) could and would be willing to serve as lay educators of G × E education is unclear. METHODS: A cross-sectional survey of youth living in Southern Ethiopia was conducted from August to September 2017. Trained data collectors administered the survey on 377 randomly selected youth who ranged in age from 15 to 24; 52% were female and 95% reported having some formal education. Self-reported willingness and a constructed competency score were assessed. Bivariate analyses tested for factors associated with willingness and competency to serve as lay G × E literacy builders. RESULTS: Competency and willingness were significantly greater (p < 0.05) for youth who were male, had some formal education, and had civic or leadership experience. Differences in median willingness were significant for youth who scored as more competent versus those who scored as less competent (p < 0.001). There were no characteristics that moderated the association of competency with willingness. CONCLUSION: Youth peer educator programs hold promise for disseminating improved G Χ E literacy and reducing stigma associated with deterministic misunderstandings. Thoughtful recruitment and training strategies will be needed to ensure that the broadest representation of youth in LMIC contexts has the opportunity to serve in this role, particularly girls and those without formal education.


Subject(s)
Elephantiasis , Humans , Male , Female , Adolescent , Elephantiasis/genetics , Cross-Sectional Studies , Literacy , Rural Population , Surveys and Questionnaires
8.
Front Public Health ; 10: 984926, 2022.
Article in English | MEDLINE | ID: mdl-36424974

ABSTRACT

Background: Democratic deliberation (DD), a strategy to foster co-learning among researchers and communities, could be applied to gain informed public input on health policies relating to genomic translation. Purpose: We evaluated the quality of DD for gaining informed community perspectives regarding targeting communities of African Ancestry (AAn) for Hereditary Breast and Ovarian Cancer (HBOC) screening in Georgia. Methods: We audiotaped a 2.5 day conference conducted via zoom in March 2021 to examine indicators of deliberation quality based on three principles: (1) inclusivity (diverse viewpoints based on participants' demographics, cancer history, and civic engagement), (2) consideration of factual information (balanced and unbiased expert testimonies, participant perceived helpfulness), and (3) deliberation (speaking opportunities, adoption of a societal perspective on the issue, reasoned justification of ideas, and participant satisfaction). Results: We recruited 24 participants who reflected the diversity of views and life experiences of citizens of AAn living in Georgia. The expert testimony development process we undertook for creating balanced factual information was endorsed by experts' feedback. Deliberation process evaluation showed that while participation varied (average number of statements = 24, range: 3-62), all participants contributed. Participants were able to apply expert information and take a societal perspective to deliberate on the pros and cons of targeting individuals of AAn for HBOC screening in Georgia. Conclusions: The rigorous process of public engagement using deliberative democracy approach can successfully engage a citizenry with diverse and well-informed views, do so in a relatively short time frame and yield perspectives based on high quality discussion.


Subject(s)
Ovarian Neoplasms , Policy Making , Humans , Female , Democracy , Early Detection of Cancer , Community Participation/methods , Ovarian Neoplasms/diagnosis , Ovarian Neoplasms/genetics
9.
Cancer Control ; 29: 10732748221130567, 2022.
Article in English | MEDLINE | ID: mdl-36171178

ABSTRACT

INTRODUCTION: Lung cancer screening is greatly underutilized among those who may benefit from early detection. METHODS: We analysed data from a subsample (n = 929) of the 2020 Health Information National Trends Survey. We tested multivariable logistic regression models of associations of cancer worry, information insufficiency, and perceived information gathering capacity with reports of having discussed lung cancer screening with a health care provider. RESULTS: Among former smokers, no factors were associated significantly with lung cancer screening information seeking. However, for current smokers, extreme cancer worry was positively and significantly associated with having discussed lung cancer screening with a health care provider (OR: 12.95; 95% CI: 2.11, 79.39). CONCLUSION: To increase uptake of lung cancer screening, public health campaigns and healthcare providers will face the dual challenge of increasing perceived need for screening among former smokers while directing current smokers with high levels of worry to see the benefits of early detection.


Subject(s)
Early Detection of Cancer , Lung Neoplasms , Data Analysis , Health Personnel , Humans , Lung Neoplasms/diagnosis , Lung Neoplasms/epidemiology , Mass Screening , Smokers , Smoking/adverse effects , Smoking/epidemiology
10.
J Community Genet ; 13(3): 281-292, 2022 Jun.
Article in English | MEDLINE | ID: mdl-35486291

ABSTRACT

Pathogenic variants in the BRCA1 and BRCA2 (BRCA1/2) genes are associated with elevated cancer risks in men and women. Due to a founder effect, Ashkenazi Jewish individuals are at higher risk for carrying three specific BRCA1/2 pathogenic variants. There have been recent calls for population screening in this population because many carriers do not have family histories suggestive of hereditary cancer. One approach could be to integrate optional BRCA1/2 testing into routinely offered reproductive carrier screening for recessive and X-linked disorders. However, the differing goals of these types of testing (i.e., personal health risks versus family planning) raise questions about the implications for patient education and informed consent. To this end, we aimed to determine interest, attitudes, and preferences regarding integrating such testing by electronically surveying 331 Ashkenazi Jewish participants in JScreen - a national, not-for-profit, at-home carrier screening program focused on genetic risks in Jewish communities. We found that while 41% of participants had plans to pursue BRCA1/2 testing, 93% would have opted for such testing if offered as an add-on to reproductive carrier screening. This was particularly true of those with higher perceived cancer risk and more positive attitudes toward genetic testing. With respect to preferences about delivery of this service, more than 85% of participants preferred remote (telephone, print, or web-based) genetic education rather than traditional genetic counseling. These results suggest that offering optional BRCA1/2 testing within the context of reproductive carrier screening might provide opportunities for cancer prevention without overburdening scarce genetic counseling resources.

11.
Patient Educ Couns ; 105(7): 1953-1962, 2022 07.
Article in English | MEDLINE | ID: mdl-35304074

ABSTRACT

BACKGROUND: Inherited risk is a family issue. Identifying family members who carry a pathogenic genetic variant that increases risk of cancers and other chronic diseases can be lifesaving for those affected. OBJECTIVE: The research questions are: (1) which family communication frameworks have been applied, (2) how do intervention strategies employed map to these theories, and (3) to what extent were families receptive to these strategies and communication increased? METHODS: Manuscripts published between January 2010 and August 2020 were searched in three databases: PubMed, PsycINFO, and Web of Science. RESULTS: Nine intervention trials were identified. All interventions were evaluated in clinical genetic counseling contexts using at least one individual-level strategy (e.g. increase knowledge). Only three focused on dyadic conversations such as preparing for relatives' information needs. CONCLUSIONS: This systematic review posed the question whether theoretically based approaches have been applied to foster family genetic risk communication. Greater attention needs to be paid to the utilization of dyadic level and family system level theories to guide intervention developments. PRACTICAL IMPLICATIONS: We conclude by calling for accelerating and broadening the development of interventions to enable family communication about inherited risk that are theory-based, incorporate family-systems thinking, and are conducted outside of specialty clinic settings.


Subject(s)
Communication , Neoplasms , Family , Genetic Counseling , Humans , Neoplasms/genetics
12.
PLoS One ; 17(2): e0262575, 2022.
Article in English | MEDLINE | ID: mdl-35157722

ABSTRACT

Citizen science (CS) approaches involving non-professional researchers (citizens) as research collaborators has been used infrequently in health promotion generally and specifically, in cancer prevention. Standardized CS approaches may be especially useful for developing communication interventions to encourage families to consider cancer genetic services. We engaged survivors of ovarian cancer and their close relatives as CS collaborators to collect and help interpret data to inform content for a website, printed invitation materials, and short-message reminders. We applied an implementation quality framework, and posed four research questions regarding the feasibility of CS: recruitment, data collection, data quality and evaluation of the experience. CS members were recruited through three networks: clinical sites, local and national cancer support organizations, and online ovarian cancer patient support groups. The professional research team operationalized theory-aligned CS tasks, five data collection options, question banks/scripts for creating surveys, structured interviews, online training and ongoing support from research coaches. 14 CS members agreed to the 12-week and 20-hour commitment for an honorarium. CS members opted to do both qualitative and quantitative assessments. CS members collected 261 surveys and 39 structured interviews. The largest number of surveys were collected for Task 1 (n = 102) to assess survivors' reactions to different possible options for motivating survivors to visit a study website; 77% of this data were complete (i.e., no missing values). Data collected for tasks 2, 3, 4, and 5 (e.g., assessment of survivors' and relatives' respective communication preferences) ranged from 10 to 58 surveys (80% to 84% completeness). All data were collected within the specified time frame. CSs reported 17 hours of work on average and regarded the experience positively. Our experience suggests that CS engagement is feasible, can yield comprehensive quantitative and qualitative data, and is achievable in a relatively a short timeline.


Subject(s)
Family/psychology , Genetic Services , Ovarian Neoplasms/psychology , Adult , Citizen Science/methods , Female , Humans , Interviews as Topic , Ovarian Neoplasms/genetics , Ovarian Neoplasms/pathology , Program Development , Research Personnel/psychology , Surveys and Questionnaires
13.
J Womens Health (Larchmt) ; 31(8): 1120-1126, 2022 08.
Article in English | MEDLINE | ID: mdl-35171027

ABSTRACT

Background: The U.S. Preventive Services Task Force (USPSTF) does not recommend routine mammogram screening for women aged 40-49 years at average risk for breast cancer. We aimed to assess the extent to which women were following guideline recommendations and to examine whether guideline awareness and other individual-level factors were associated with adherence. Materials and Methods: We surveyed a nationally representative panel of 383 U.S. women aged 40-49 years at low risk for hereditary breast cancer in October 2019. Results: Only 29% of women reported not having initiated screening mammography. Most women (80%) were unaware of the USPSTF screening guideline related to age of initiation and frequency of mammography. Being aware of the recommendation to initiate screening at age 50 increased the odds of not initiating screening (odds ratio [OR] = 6.70, p < 0.001), whereas being older than 45 years (OR = 0.22, p < 0.001) and having a primary care doctor decreased the odds of not initiating screening (OR = 0.25, p < 0.001). Conclusions: Mammogram screening in excess of USPSTF recommendations is prevalent among U.S. women aged 40-49 years. Efforts are needed to increase women's awareness of the rationale for guidelines and the opportunities to discuss with providers whether delaying mammograms is appropriate.


Subject(s)
Breast Neoplasms , Mammography , Breast Neoplasms/diagnosis , Breast Neoplasms/prevention & control , Early Detection of Cancer , Female , Humans , Mass Screening , Middle Aged , Surveys and Questionnaires , United States
14.
Health Promot Pract ; 23(3): 504-517, 2022 05.
Article in English | MEDLINE | ID: mdl-34049463

ABSTRACT

Community health workers (CHWs) have been successful partners in addressing public health and health care challenges but have yet to be engaged in efforts to promote family health history (FHH) collection. FHH information is a key factor in determining disease risk and supporting screening and prevention across multiple diseases. The collection of FHH information could be facilitated by the existing cadre of CHWs already working alongside clients and families. In this qualitative study, we interviewed 30 CHWs from Georgia to better understand the current level of knowledge about FHH, perceptions of how FHH collection aligns with their role, and barriers and facilitators in order to support more active involvement of CHWs in FHH collection. Interviews were completed, transcribed, and double coded by three study team members. More than half of CHWs reported knowing their own FHH information. CHWs showed a strong interest and support for collecting FHH in their job, despite limited current engagement in this role. CHWs acknowledged the collection of FHH as being an opportunity to empower clients to have conversations with their providers. To better support this work, CHWs requested training in using and integrating FHH tools into their workflow and support in communicating about FHH with their clients. Our findings suggest that with support and training, CHWs are uniquely positioned to improve FHH collection among their client base. Ultimately, improving FHH collection skills among the population could allow for better integration of risk-stratified approaches that are informed by FHH information for the prevention, management, and treatment of disease.


Subject(s)
Community Health Workers , Community Health Workers/education , Georgia , Humans , Pilot Projects , Qualitative Research
15.
Cancer ; 128(6): 1252-1259, 2022 03 15.
Article in English | MEDLINE | ID: mdl-34882782

ABSTRACT

BACKGROUND: Racial disparities in the uptake of cancer genetic services are well documented among African American (AA) women. Understanding the multiple social and psychological factors that can influence the uptake of genetic testing among AA women is needed. METHODS: Data came from 270 AA women diagnosed with ovarian cancer and participating in a population-based, case-control study of ovarian cancer who were asked about genetic testing. Logistic regression analyses tested the associations of predisposing, enabling, and need factors with reported genetic testing uptake. RESULTS: One-third of the sample (35%) reported having had genetic testing. In the multivariable model, AA women with higher incomes had more than double the odds of being tested than those with the lowest income (odds ratio [OR] for $25,000-$74,999, 2.04; 95% confidence interval [CI], 1.06-3.99; OR for ≥$75,000, 2.32; 95% CI, 0.92-5.94). AA women who reported employment discrimination were significantly less likely to report genetic testing than those who did not report job discrimination (OR, 0.39; 95% CI, 0.14-0.95). Marital status, Medicaid versus other insurance, prayer frequency, and perceived social support were significantly associated with genetic testing uptake in bivariate analyses but were not significant contributors in multivariable analyses. CONCLUSIONS: Consistent with other studies of AA women, a minority of African American Cancer Epidemiology Study participants had undergone genetic testing. Having a lower income and experiencing job discrimination decreased the likelihood of testing. These results provide foundational evidence supporting the need for interventions to improve the uptake of genetic testing among AA women by reducing cost barriers and providing credible assurances that genetic results will be kept private and not affect social factors such as employability.


Subject(s)
Black or African American , Ovarian Neoplasms , Black or African American/genetics , Carcinoma, Ovarian Epithelial/epidemiology , Case-Control Studies , Female , Genetic Testing , Humans , Ovarian Neoplasms/diagnosis , Ovarian Neoplasms/epidemiology , Ovarian Neoplasms/genetics , United States/epidemiology
16.
PLoS Negl Trop Dis ; 15(10): e0009791, 2021 10.
Article in English | MEDLINE | ID: mdl-34606499

ABSTRACT

BACKGROUND: Podoconiosis is preventable if genetically susceptible people wear shoes starting from an early age and do so consistently. However, lack of routine use of footwear is one of the major risk factors for podoconiosis and several other foot-related Neglected Tropical Diseases (NTDs). This study is aimed at describing the extent of footwear use among school-age rural children susceptible to the disease and investigating associated socioeconomic factors. METHODS: Cross sectional surveys were conducted in 330 randomly selected households in Wolaita zone, southern Ethiopia. A household head and a child aged between 9 and 15 years were recruited from each household. Household heads provided socioeconomic data while children were asked about their footwear ownership and footwear use. RESULTS: Nearly half (49.5%) of the children reported either walking barefoot or wearing under-protective footwear in a range of situations. Girls, older children, those in higher school grades, who belonged to families with higher socio-economic status, and those who owned a larger number of pairs of footwear reported more protective use of footwear. The linear regression model constituting the adequacy of footwear ownership and interaction term (i.e. family socioeconomic status by adequacy of footwear ownership) variables explained 30% of variance in the protective use of footwear (AR2 = 0.307). The interaction effect of adequate ownership of footwear and family socioeconomic status consistently predicted the protective use of footwear among children (ß = -0.175, p<0.01) though the main effect of adequacy of footwear ownership was stronger (ß = 0.507, p<0.001). CONCLUSION: Increased adoption of protective footwear is needed to effectively prevent school-age children living in endemic areas from developing podoconiosis and other neglected tropical diseases. Interventions aimed to improve the protective footwear use should consider approaches that also increase the socio-economic capacity of families in podoconiosis endemic communities.


Subject(s)
Elephantiasis/economics , Elephantiasis/epidemiology , Adolescent , Child , Cross-Sectional Studies , Elephantiasis/prevention & control , Ethiopia/epidemiology , Family Characteristics , Female , Humans , Male , Risk Factors , Rural Population/statistics & numerical data , Shoes , Socioeconomic Factors
18.
Soc Sci Med ; 283: 114189, 2021 08.
Article in English | MEDLINE | ID: mdl-34246031

ABSTRACT

There is strong consensus regarding the need for multi-level interventions (MLIs) to address today's complex health problems. Several longstanding social ecological frameworks are commonly referred to in guiding MLI development. The specificity and comprehensiveness of these frameworks unwittingly suggest that the totality of included influences are important in all health contexts. Not surprisingly, when viewed as requiring intervention at all levels of influence, MLIs are often considered to be infeasible due to sizeable cost and logistical barriers. Thus, efforts to develop and evaluate MLIs have been extremely limited, and comparatively few examples are found in the health literature. We argue that operational frameworks to identify which levels matter in which contexts - henceforth, referred to as parsimony - could accelerate the field towards broader use of MLIs. We suggest a hypothetical operational framework informed by complexity theory and pragmatic approaches that could enable us to conceptualize, design and evaluate MLIs to consider where reflexive and recursive process mechanisms that cross levels should be targeted by MLI. The approach also emphasizes sustainability of MLIs. Without developing parsimony-based operational frameworks to move us forward, we fear that little will change, and we will simply continue to talk, without proceeding to the walk.

19.
Transl Behav Med ; 11(4): 901-911, 2021 04 26.
Article in English | MEDLINE | ID: mdl-32902617

ABSTRACT

Since the completion of the Human Genome Project, progress toward translating genomic research discoveries to address population health issues has been limited. Several meetings of social and behavioral scientists have outlined priority research areas where advancement of translational research could increase population health benefits of genomic discoveries. In this review, we track the pace of progress, study size and design, and focus of genomics translational research from 2012 to 2018 and its concordance with five social and behavioral science recommended priorities. We conducted a review of the literature following the Preferred Reporting Items for Systematic Reviews and Meta-Analysis Guidelines for Scoping Reviews. Steps involved completing a search in five databases and a hand search of bibliographies of relevant literature. Our search (from 2012 to 2018) yielded 4,538 unique studies; 117 were included in the final analyses. Two coders extracted data including items from the PICOTS framework. Analysis included descriptive statistics to help identify trends in pace, study size and design, and translational priority area. Among the 117 studies included in our final sample, nearly half focused on genomics applications that have evidence to support translation or implementation into practice (Centers for Disease Control and Prevention Tier 1 applications). Common study designs were cross-sectional (40.2%) and qualitative (24.8%), with average sample sizes of 716 across all studies. Most often, studies addressed public understanding of genetics and genomics (33.3%), risk communication (29.1%), and intervention development and testing of interventions to promote behavior change (19.7%). The number of studies that address social and behavioral science priority areas is extremely limited and the pace of this research continues to lag behind basic science advances. Much of the research identified in this review is descriptive and related to public understanding, risk communication, and intervention development and testing of interventions to promote behavior change. The field has been slow to develop and evaluate public health-friendly interventions and test implementation approaches that could enable health benefits and equitable access to genomic discoveries. As the completion of the human genome approaches its 20th anniversary, full engagement of transdisciplinary efforts to address translation challenges will be required to close this gap.


Subject(s)
Behavioral Sciences , Population Health , Communication , Cross-Sectional Studies , Genomics , Humans , United States
20.
Am J Prev Med ; 60(2): e85-e94, 2021 02.
Article in English | MEDLINE | ID: mdl-33168338

ABSTRACT

CONTEXT: This systematic review aims to (1) characterize strategies used to identify individuals at increased risk for hereditary breast and ovarian cancer syndrome and Lynch syndrome outside of oncology and clinical genetic settings, (2) describe the extent to which these strategies have extended the reach of genetic services to underserved target populations, and (3) summarize indicators of the potential scalability of these strategies. EVIDENCE ACQUISITION: Investigators searched PubMed, EMBASE, and PsycINFO for manuscripts published from October 2005 to August 2019. Eligible manuscripts were those published in English, those that described strategies to identify those at risk for hereditary breast and ovarian cancer syndrome or Lynch syndrome, those implemented outside of an oncology or genetic specialty clinic, and those that included measures of cancer genetic services uptake. This study assessed strategies used to increase the reach of genetic risk screening and counseling services. Each study was evaluated using the 16-item quality assessment tool, and results were reported according to the PRISMA guidelines. EVIDENCE SYNTHESIS: Of the 16 eligible studies, 11 were conducted in clinical settings and 5 in public health settings. Regardless of setting, most (63%, 10/16) used brief screening tools to identify people with a family history suggestive of hereditary breast and ovarian cancer syndrome or Lynch syndrome. When reported, genetic risk screening reach (range =11%-100%) and genetic counseling reach (range =11%-100%) varied widely across studies. Strategies implemented in public health settings appeared to be more successful (median counseling reach=65%) than those implemented in clinical settings (median counseling reach=26%). Most studies did not describe fundamental components relevant for broad scalability. CONCLUSIONS: Efforts to expand cancer genomic services are limited outside of traditional oncology and genetic clinics. This is a missed opportunity because evidence thus far suggests that these efforts can be successful in expanding the reach of genetic services with the potential to reduce health inequities in access. This review highlights the need for accelerating research that applies evidence-based implementation strategies and frameworks along with process evaluation to understand barriers and facilitators to scalability of strategies with high reach.


Subject(s)
Genetic Counseling , Neoplasms , Counseling , Genetic Testing , Genomics , Humans , Neoplasms/diagnosis , Neoplasms/genetics
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