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1.
Public Health Genomics ; 27(1): 83-95, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38824916

RESUMO

INTRODUCTION: Less than half of eligible Black women are assessed for genetic risk and only 28% engage in recommended hereditary breast and ovarian cancer (HBOC) risk-reducing interventions. CHWs are trusted individuals that work as a liaison between health systems and the community to improve access to services and support cancer prevention efforts, though they are an overlooked resource to support genetic risk assessment. To address the need and training gaps for CHWs, we developed and assessed an online training program to build CHW's competencies in cancer genomics and use of health information technologies to navigate high-risk individuals to appropriate genetic services. METHODS: The curriculum and 10 training modules were developed through engaging a panel of experts in a three-round Delphi process. Recruitment focused on CHWs who worked in clinical settings or groups providing outreach or health services to Black women. We assessed: changes in knowledge and attitudes about HBOC and genomics, as well as the perceptions about the quality and implementation of the training. RESULTS: Forty-six individuals expressed interest in the training after recruitment. Thirty eight individuals were eligible for the training and 26 completed the course. We found improvements in knowledge and genomics competencies immediately post-course, but the majority of these improvements were not sustained at 3-month follow-up. The training was highly rated for its relevance to CHW work and overall delivery. Top rated sessions included HBOC overview and family history collection. On average, participants reported discussing HBOC with 17 individuals at 3-month follow-up. CONCLUSION: Championing a diverse cancer and genomics workforce can help address the goals of the National Cancer Plan to improve early detection and health equity. Through this training, CHWs gained critical cancer and genomics knowledge that was then applied to their primary roles.


Assuntos
Agentes Comunitários de Saúde , Genômica , Humanos , Feminino , Agentes Comunitários de Saúde/educação , Genômica/educação , Genômica/métodos , Adulto , Pessoa de Meia-Idade , Neoplasias da Mama/genética , Currículo , Neoplasias Ovarianas/genética , Neoplasias Ovarianas/prevenção & controle , Conhecimentos, Atitudes e Prática em Saúde , Neoplasias/genética , Masculino , Competência Clínica
2.
Am J Hum Genet ; 111(3): 433-444, 2024 03 07.
Artigo em Inglês | MEDLINE | ID: mdl-38307026

RESUMO

We use the implementation science framework RE-AIM (reach, effectiveness, adoption, implementation, and maintenance) to describe outcomes of In Our DNA SC, a population-wide genomic screening (PWGS) program. In Our DNA SC involves participation through clinical appointments, community events, or at home collection. Participants provide a saliva sample that is sequenced by Helix, and those with a pathogenic variant or likely pathogenic variant for CDC Tier 1 conditions are offered free genetic counseling. We assessed key outcomes among the first cohort of individuals recruited. Over 14 months, 20,478 participants enrolled, and 14,053 samples were collected. The majority selected at-home sample collection followed by clinical sample collection and collection at community events. Participants were predominately female, White (self-identified), non-Hispanic, and between the ages of 40-49. Participants enrolled through community events were the most racially diverse and the youngest. Half of those enrolled completed the program. We identified 137 individuals with pathogenic or likely pathogenic variants for CDC Tier 1 conditions. The majority (77.4%) agreed to genetic counseling, and of those that agreed, 80.2% completed counseling. Twelve clinics participated, and we conducted 108 collection events. Participants enrolled at home were most likely to return their sample for sequencing. Through this evaluation, we identified facilitators and barriers to implementation of our state-wide PWGS program. Standardized reporting using implementation science frameworks can help generalize strategies and improve the impact of PWGS.


Assuntos
Aconselhamento Genético , Ciência da Implementação , Humanos , Feminino , Adulto , Pessoa de Meia-Idade , Genômica
3.
J Am Med Inform Assoc ; 31(3): 631-639, 2024 Feb 16.
Artigo em Inglês | MEDLINE | ID: mdl-38164994

RESUMO

INTRODUCTION: This study aimed to identify barriers and facilitators to the implementation of family cancer history (FCH) collection tools in clinical practices and community settings by assessing clinicians' perceptions of implementing a chatbot interface to collect FCH information and provide personalized results to patients and providers. OBJECTIVES: By identifying design and implementation features that facilitate tool adoption and integration into clinical workflows, this study can inform future FCH tool development and adoption in healthcare settings. MATERIALS AND METHODS: Quantitative data were collected using survey to evaluate the implementation outcomes of acceptability, adoption, appropriateness, feasibility, and sustainability of the chatbot tool for collecting FCH. Semistructured interviews were conducted to gather qualitative data on respondents' experiences using the tool and recommendations for enhancements. RESULTS: We completed data collection with 19 providers (n = 9, 47%), clinical staff (n = 5, 26%), administrators (n = 4, 21%), and other staff (n = 1, 5%) affiliated with the NCI Community Oncology Research Program. FCH was systematically collected using a wide range of tools at sites, with information being inserted into the patient's medical record. Participants found the chatbot tool to be highly acceptable, with the tool aligning with existing workflows, and were open to adopting the tool into their practice. DISCUSSION AND CONCLUSIONS: We further the evidence base about the appropriateness of scripted chatbots to support FCH collection. Although the tool had strong support, the varying clinical workflows across clinic sites necessitate that future FCH tool development accommodates customizable implementation strategies. Implementation support is necessary to overcome technical and logistical barriers to enhance the uptake of FCH tools in clinical practices and community settings.


Assuntos
Oncologia , Neoplasias , Humanos , Pessoal Administrativo , Coleta de Dados , Atenção à Saúde , Anamnese
4.
J Cancer Educ ; 39(1): 70-77, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-37919623

RESUMO

We developed a curriculum for community health workers (CHWs) using an innovative, community-engaged focus group and Delphi process approach. Equipping CHWs with knowledge of hereditary breast and ovarian cancer syndrome (HBOC) and genetics could help enhance identification of women at risk for HBOC, referral, and navigation through genetic services. We conducted focus groups with five CHWs and a three-round Delphi process with eight experts. In the first round of the Delphi process, participants rated and commented on draft curriculum modules. The second round involved live video discussion to highlight points of confusion and concern in the modules. The curriculum was revised and refined based on quantitative and qualitative data and reassessed by the experts in Round 3. Ultimately, agreement was achieved on eight of 10 modules when assessing for clarity of learning objectives, seven out of 10 when assessing for adult learning theory, and nine out of 10 when assessing for participants' ability to learn desired knowledge. We plan to virtually deliver this curriculum to CHWs to enhance their HBOC and genomic competencies. By equipping CHWs to understand and participate in genomics education, we can enable more equitable participation in genomics-informed clinical care and research. Beyond this curriculum, the Delphi methodology can further be used to design content for new CHW curriculums.


Assuntos
Agentes Comunitários de Saúde , Neoplasias Ovarianas , Adulto , Humanos , Feminino , Agentes Comunitários de Saúde/educação , Currículo , Neoplasias Ovarianas/genética , Neoplasias Ovarianas/prevenção & controle
5.
Am J Prev Med ; 66(3): 503-515, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-37806365

RESUMO

INTRODUCTION: Currently, no standard workflow exists for managing patients with pathogenic variants that put them at higher risk for hereditary cancers. Therefore, follow-up care for individuals with pathogenic variants is logistically challenging and results in poor guideline adherence. To address this challenge, authors created clinical management strategies for individuals identified at high risk for hereditary cancers. METHODS: An implementation mapping approach was used to develop and evaluate the establishment of a Hereditary Cancer Clinic at the Medical University of South Carolina throughout in 2022. This approach consisted of 5 steps: conduct a needs assessment, identify objectives, select implementation strategies, produce implementation protocols, and develop an evaluation plan. The needs assessment consisted of qualitative interviews with patients (n=11), specialists (n=9), and members of the implementation team (n=4). Interviews were coded using the Consolidated Framework for Implementation Research to identify barriers and facilitators to establishment of the Hereditary Cancer Clinic. Objectives were identified, and then the team selected implementation strategies and produced implementation protocols to address concerns identified during the needs assessment. Authors conducted a second round of patient interviews to assess patient education materials. RESULTS: The research team developed a long-term evaluation plan to guide future assessment of implementation, service, and clinical/patient outcomes. CONCLUSIONS: This approach provides the opportunity for real-time enhancements and impact, with strategies for care specialists, patients, and implementation teams. Findings support ongoing efforts to improve patient management and outcomes while providing an opportunity for long-term evaluation of implementation strategies and guidelines for patients at high risk for hereditary cancers.


Assuntos
Fidelidade a Diretrizes , Neoplasias , Humanos , Pesquisa Qualitativa , Avaliação das Necessidades , Neoplasias/genética , Neoplasias/prevenção & controle , Predisposição Genética para Doença
6.
Implement Sci Commun ; 4(1): 122, 2023 Oct 11.
Artigo em Inglês | MEDLINE | ID: mdl-37821977

RESUMO

INTRODUCTION: Population-wide genomic screening for CDC Tier-1 conditions offers the ability to identify the 1-2% of the US population at increased risk for Hereditary Breast and Ovarian Cancer, Lynch Syndrome, and Familial Hypercholesterolemia. Implementation of population-wide screening programs is highly complex, requiring engagement of diverse collaborators and implementation teams. Implementation science offers tools to promote integration of these programs through the identification of determinants of success and strategies to address potential barriers. METHODS: Prior to launching the program, we conducted a pre-implementation survey to assess anticipated barriers and facilitators to reach, effectiveness, adoption, implementation, and maintenance (RE-AIM), among 51 work group members (phase 1). During the first year of program implementation, we completed coding of 40 work group meetings guided by the Consolidated Framework for Implementation Research (CFIR) (phase 2). We matched the top barriers to implementation strategies identified during phase 2 using the CFIR-ERIC (Expert Recommendation for Implementing Change) matching tool. RESULTS: Staffing and workload concerns were listed as the top barrier in the pre-implementation phase of the program. Top barriers during implementation included adaptability (n = 8, 20%), complexity (n = 14, 35%), patient needs and resources (n = 9, 22.5%), compatibility (n = 11, 27.5%), and self-efficacy (n = 9, 22.5%). We identified 16 potential implementation strategies across six ERIC clusters to address these barriers and operationalized these strategies for our specific setting and program needs. CONCLUSION: Our findings provide an example of successful use of the CFIR-ERIC tool to guide implementation of a population-wide genomic screening program.

7.
Health Educ Behav ; 50(5): 572-585, 2023 10.
Artigo em Inglês | MEDLINE | ID: mdl-36794801

RESUMO

PROBLEM ADDRESSED: To better understand the factors associated with family cancer history (FCH) information and cancer information seeking, we model the process an individual undergoes when assessing whether to gather FCH and seek cancer information and compare models by sociodemographics and family history of cancer. We used cross-sectional data from the Health Information National Trends Survey (HINTS 5, Cycle 2) and variables (e.g., emotion and self-efficacy) associated with the Theory of Motivated Information Management to assess the process of FCH gathering and information seeking. We completed path analysis to assess the process of FCH gathering and stratified path models. RESULTS: Those who felt they could lower their chances of getting cancer (emotion) were more confident in their ability to complete FCH on a medical form (self-efficacy; B = 0.11, p < .0001) and more likely to have discussed FCH with family members (B = 0.07, p < .0001). Those who were more confident in their ability to complete a summary of their family history on a medical form were more likely to have discussed FCH with family members (B = 0.34, p < .0001) and seek other health information (B = 0.24, p < .0001). Stratified models showed differences in this process by age, race/ethnicity, and family history of cancer. IMPLICATIONS FOR PUBLIC HEALTH RESEARCH AND PRACTICE: Tailoring outreach and education strategies to address differences in perceived ability to lower chances of getting cancer (emotion) and confidence in the ability to complete FCH (self-efficacy) could help encourage less engaged individuals to learn about their FCH and gather cancer information.


Assuntos
Comportamento de Busca de Informação , Neoplasias , Humanos , Estudos Transversais , Neoplasias/psicologia , Família , Etnicidade/psicologia
8.
Diseases ; 10(4)2022 Oct 03.
Artigo em Inglês | MEDLINE | ID: mdl-36278574

RESUMO

Background: A better understanding of neighborhood-level factors' contribution is needed in order to increase the precision of cancer control interventions that target geographic determinants of cancer health disparities. This study characterized the distribution of neighborhood deprivation in a racially diverse cohort of prostate cancer survivors. Methods: A retrospective cohort of 253 prostate cancer patients who were treated with radical prostatectomy from 2011 to 2019 was established at the Medical University of South Carolina. Individual-level data on clinical variables (e.g., stage, grade) and race were abstracted. Social Deprivation Index (SDI) and Healthcare Professional Shortage (HPS) status was obtained from the Robert Graham Center and assigned to participants based on their residential census tract. Data were analyzed with descriptive statistics and multivariable logistic regression. Results: The cohort of 253 men consisted of 168 white, 81 African American, 1 Hispanic and 3 multiracial men. Approximately 49% of 249 men lived in areas with high SDI (e.g., SDI score of 48 to 98). The mean for SDI was 44.5 (+27.4), and the range was 97 (1−98) for all study participants. African American men had a significantly greater likelihood of living in a socially deprived neighborhood compared to white men (OR = 3.7, 95% C.I. 2.1−6.7, p < 0.01), while men who lived in areas with higher HPS shortage status were significantly more likely to live in a neighborhood that had high SDI compared to men who lived in areas with lower HPS shortages (OR = 4.7, 95% C.I. = 2.1−10.7, p < 0.01). African Americans had a higher likelihood of developing biochemical reoccurrence (OR = 3.7, 95% C.I. = 1.7−8.0) compared with white men. There were no significant association between SDI and clinical characteristics of prostate cancer. Conclusions: This study demonstrates that SDI varies considerably by race among men with prostate cancer treated with radical prostatectomy. Using SDI to understand the social environment could be -particularly useful as part of precision medicine and precision public health approaches and could be used by cancer centers, public health providers, and other health care specialists to inform operational decisions about how to target health promotion and disease prevention efforts in catchment areas and patient populations.

9.
J Pers Med ; 12(8)2022 Jul 27.
Artigo em Inglês | MEDLINE | ID: mdl-36013178

RESUMO

Background and Objectives: Genomic information is increasingly relevant for disease prevention and risk management at the individual and population levels. Screening healthy adults for Tier 1 conditions of hereditary breast and ovarian cancer, Lynch syndrome, and familial hypercholesterolemia using a population-based approach can help identify the 1−2% of the US population at increased risk of developing diseases associated with these conditions and tailor prevention strategies. Our objective is to report findings from an implementation science study that evaluates multi-level facilitators and barriers to implementation of the In Our DNA SC population-wide genomic screening initiative. Methods: We established an IMPACTeam (IMPlementAtion sCience for In Our DNA SC Team) to evaluate the pilot phase using principles of implementation science. We used a parallel convergent mixed methods approach to assess the Reach, Implementation, and Effectiveness outcomes from the RE-AIM implementation science framework during the pilot phase of In Our DNA SC. Quantitative assessment included the examination of frequencies and response rates across demographic categories using chi-square tests. Qualitative data were audio-recorded and transcribed, with codes developed by the study team based on the semi-structured interview guide. Results: The pilot phase (8 November 2021, to 7 March 2022) included recruitment from ten clinics throughout South Carolina. Reach indicators included enrollment rate and representativeness. A total of 23,269 potential participants were contacted via Epic's MyChart patient portal with 1976 (8.49%) enrolled. Black individuals were the least likely to view the program invitation (28.9%) and take study-related action. As a result, there were significantly higher enrollment rates among White (10.5%) participants than Asian (8.71%) and Black (3.46%) individuals (p < 0.0001). Common concerns limiting reach and participation included privacy and security of results and the impact participation would have on health or life insurance. Facilitators included family or personal history of a Tier 1 condition, prior involvement in genetic testing, self-interest, and altruism. Assessment of implementation (i.e., adherence to protocols/fidelity to protocols) included sample collection rate (n = 1104, 55.9%) and proportion of samples needing recollection (n = 19, 1.7%). There were no significant differences in sample collection based on demographic characteristics. Implementation facilitators included efficient collection processes and enthusiastic clinical staff. Finally, we assessed the effectiveness of the program, finding low dropout rates (n = 7, 0.35%), the identification of eight individuals with Tier 1 conditions (0.72% positive), and high rates of follow-up genetic counseling (87.5% completion). Conclusion: Overall, Asian and Black individuals were less engaged, with few taking any study-related actions. Strategies to identify barriers and promoters for the engagement of diverse populations are needed to support participation. Once enrolled, individuals had high rates of completing the study and follow-up engagement with genetic counselors. Findings from the pilot phase of In Our DNA SC offer opportunities for improvement as we expand the program and can provide guidance to organizations seeking to begin efforts to integrate population-wide genomic screening.

10.
BMC Proc ; 16(Suppl 4): 4, 2022 Jul 07.
Artigo em Inglês | MEDLINE | ID: mdl-35799197

RESUMO

BACKGROUND: Precision public health is an emergent field that requires transdisciplinary collaborations and leverages innovative approaches to improve population health. These opportunities have inspired a new generation of precision public health researchers. Despite burgeoning interest in precision public health, there are limited opportunities for researchers to convene and continue the momentum of this field. METHODS: The Transdisciplinary Conference for Future Leaders in Precision Public Health was the among the first events to bring together international researchers and practitioners to learn, network, and agenda set for the future of the field. The conference took place virtually on October 14 and 15, 2021. RESULTS: The conference spanned two days and featured a keynote address, speakers from public health disciplines who are international leaders in precision-based research, networking opportunities, a poster session, and research agenda setting activities. CONCLUSION: The conference was a critical first step to creating a shared international conversation about precision public health, especially among early-stage investigators. This allowed attendees to continue building their individual skills and international collaborations to support the growth of the field of precision public health.

11.
Front Genet ; 13: 881527, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35754808

RESUMO

Precision public health is an emerging discipline combining principles and frameworks of precision health with the goal of improving population health. The development of research priorities drawing on the strengths of precision and public health is critical to facilitate the growth of the discipline to improve health outcomes. We held an interactive workshop during a virtual conference bringing together early-career researchers across public health disciplines to identify research priorities in precision public health. The workshop participants discussed and voted to identify three priority areas for future research and capacity building including 1) enhancing equity and access to precision public health research and resources, 2) improving tools and metrics for evaluation and 3) applying principles of implementation science to support sustainable practices. Participants also developed future objectives for achieving each priority. Future efforts by working groups will continue the process of identifying, revising, and advancing critical research priorities to grow the impact of precision public health.

12.
Healthcare (Basel) ; 10(6)2022 Jun 08.
Artigo em Inglês | MEDLINE | ID: mdl-35742117

RESUMO

Cancer is the third largest source of spending for Medicaid in the United States. A working group of the American Public Health Association Genomics Forum Policy Committee reviewed 133/149 pieces of literature addressing the impact of Medicaid expansion on cancer screening and genetic testing in underserved groups and the general population. Breast and colorectal cancer screening rates improved during very early Medicaid expansion but displayed mixed improvement thereafter. Breast cancer screening rates have remained steady for Latina Medicaid enrollees; colorectal cancer screening rates have improved for African Americans. Urban areas have benefited more than rural. State programs increasingly cover BRCA1/2 and Lynch syndrome genetic testing, though testing remains underutilized in racial and ethnic groups. While increased federal matching could incentivize more states to engage in Medicaid expansion, steps need to be taken to ensure that they have an adequate distribution of resources to increase screening and testing utilization.

13.
Implement Sci Commun ; 3(1): 48, 2022 Apr 28.
Artigo em Inglês | MEDLINE | ID: mdl-35484601

RESUMO

BACKGROUND: In 2021, the Medical University of South Carolina (MUSC) partnered with Helix, a population genetic testing company, to offer population-wide genomic screening for Centers for Disease Control and Preventions' Tier 1 conditions of hereditary breast and ovarian cancer, Lynch syndrome, and familial hypercholesterolemia to 100,000 individuals in South Carolina. We developed an implementation science protocol to study the multi-level factors that influence the successful implementation of the In Our DNA SC initiative. METHODS: We will use a convergent parallel mixed-methods study design to evaluate the implementation of planned strategies and associated outcomes for In Our DNA SC. Aims focus on monitoring participation to ensure engagement of diverse populations, assessing contextual factors that influence implementation in community and clinical settings, describing the implementation team's facilitators and barriers, and tracking program adaptations. We report details about each data collection tool and analyses planned, including surveys, interview guides, and tracking logs to capture and code work group meetings, adaptations, and technical assistance needs. DISCUSSION: The goal of In Our DNA SC is to provide population-level screening for actionable genetic conditions and to foster ongoing translational research. The use of implementation science can help better understand how to support the success of In Our DNA SC, identify barriers and facilitators to program implementation, and can ensure the sustainability of population-level genetic testing. The model-based components of our implementation science protocol can support the identification of best practices to streamline the expansion of similar population genomics programs at other institutions.

14.
Public Health Genomics ; : 1-9, 2021 Dec 06.
Artigo em Inglês | MEDLINE | ID: mdl-34872100

RESUMO

INTRODUCTION: Primary care providers (PCPs) and oncologists lack time and training to appropriately identify patients at increased risk for hereditary cancer using family health history (FHx) and clinical practice guideline (CPG) criteria. We built a tool, "ItRunsInMyFamily" (ItRuns) that automates FHx collection and risk assessment using CPGs. The purpose of this study was to evaluate ItRuns by measuring the level of concordance in referral patterns for genetic counseling/testing (GC/GT) between the CPGs as applied by the tool and genetic counselors (GCs), in comparison to oncologists and PCPs. The extent to which non-GCs are discordant with CPGs is a gap that health information technology, such as ItRuns, can help close to facilitate the identification of individuals at risk for hereditary cancer. METHODS: We curated 18 FHx cases and surveyed GCs and non-GCs (oncologists and PCPs) to assess concordance with ItRuns CPG criteria for referring patients for GC/GT. Percent agreement was used to describe concordance, and logistic regression to compare providers and the tool's concordance with CPG criteria. RESULTS: GCs had the best overall concordance with the CPGs used in ItRuns at 82.2%, followed by oncologists with 66.0% and PCPs with 60.6%. GCs were significantly more likely to concur with CPGs (OR = 4.04, 95% CI = 3.35-4.89) than non-GCs. All providers had higher concordance with CPGs for FHx cases that met the criteria for genetic counseling/testing than for cases that did not. DISCUSSION/CONCLUSION: The risk assessment provided by ItRuns was highly concordant with that of GC's, particularly for at-risk individuals. The use of such technology-based tools improves efficiency and can lead to greater numbers of at-risk individuals accessing genetic counseling, testing, and mutation-based interventions to improve health.

15.
Artigo em Inglês | MEDLINE | ID: mdl-34831579

RESUMO

The purpose of this study was to examine the association between neighborhood social deprivation and individual-level characteristics on breast cancer staging in African American and white breast cancer patients. We established a retrospective cohort of patients with breast cancer diagnosed from 1996 to 2015 using the South Carolina Central Cancer Registry. We abstracted sociodemographic and clinical variables from the registry and linked these data to a county-level composite that captured neighborhood social conditions-the social deprivation index (SDI). Data were analyzed using chi-square tests, Student's t-test, and multivariable ordinal regression analysis to evaluate associations. The study sample included 52,803 female patients with breast cancer. Results from the multivariable ordinal regression model demonstrate that higher SDI (OR = 1.06, 95% CI: 1.02-1.10), African American race (OR = 1.35, 95% CI: 1.29-1.41), and being unmarried (OR = 1.17, 95% CI: 1.13-1.22) were associated with a distant stage at diagnosis. Higher tumor grade, younger age, and more recent year of diagnosis were also associated with distant-stage diagnosis. As a proxy for neighborhood context, the SDI can be used by cancer registries and related population-based studies to identify geographic areas that could be prioritized for cancer prevention and control efforts.


Assuntos
Neoplasias da Mama , Neoplasias da Mama/epidemiologia , Feminino , Humanos , Estadiamento de Neoplasias , Sistema de Registros , Características de Residência , Estudos Retrospectivos , Privação Social , Fatores Socioeconômicos , South Carolina/epidemiologia
16.
Cancer Prev Res (Phila) ; 14(10): 927-932, 2021 10.
Artigo em Inglês | MEDLINE | ID: mdl-34341014

RESUMO

Lynch syndrome is the most common inherited cancer syndrome that increases the risk of developing colorectal and endometrial cancer. Universal screening guidelines were first recommended by the Centers for Disease Control and Prevention (CDC) in 2009 and are updated annually by multiple societies. Therefore, one would expect genetic testing rates to increase over time. But testing remains underutilized among those with colorectal or endometrial cancer, even though early detection can improve prognosis and survival rates. In this study, we aimed to understand differences in genetic testing uptake among those with colorectal cancer or endometrial cancer from 2005, 2010, 2015, using data from the National Health Interview Survey (NHIS). We examined genetic testing uptake across cancer-type, age (≤50 or ≥51), sex, race, insurance, and education using a χ2 statistical analysis. Despite an upward genetic testing trend in 2010, we found no significant differences in genetic testing uptake over time. In 2010, non-White individuals experienced the highest increase from 2005 in comparison with White individuals. However, genetic testing rates declined for both groups by 2015. Our findings show that genetic testing for colorectal cancer and endometrial cancer did not increase over a 10-year period in spite of guidelines that recommend testing.Prevention Relevance: Genetic testing uptake for colorectal cancer and endometrial cancer has not increased over a 10-year period in spite of universal screening guidelines. More genetic testing education is needed at the provider and patient level to improve screening strategies for cancer patients who are most at risk for Lynch syndrome.


Assuntos
Neoplasias Colorretais Hereditárias sem Polipose/diagnóstico , Testes Genéticos/estatística & dados numéricos , Participação do Paciente/estatística & dados numéricos , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos de Casos e Controles , Neoplasias Colorretais Hereditárias sem Polipose/epidemiologia , Estudos Transversais , Detecção Precoce de Câncer/métodos , Detecção Precoce de Câncer/psicologia , Detecção Precoce de Câncer/estatística & dados numéricos , Feminino , Predisposição Genética para Doença , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Participação do Paciente/psicologia , Fatores de Risco , Inquéritos e Questionários , Estados Unidos/epidemiologia
17.
Hered Cancer Clin Pract ; 19(1): 31, 2021 Jul 17.
Artigo em Inglês | MEDLINE | ID: mdl-34274008

RESUMO

BACKGROUND: Family health history (FHx) is an effective tool for identifying patients at risk of hereditary cancer. Hereditary cancer clinical practice guidelines (CPG) contain criteria used to evaluate FHx and to make recommendations for genetic consultation. Comparing different CPGs used to evaluate a common set of FHx provides insight into how well the CPGs perform, the extent of agreement across guidelines, and how well they identify patients who should consider a cancer genetic consultation. METHODS: We compare the American College of Medical Genetics and Genomics (ACMG) and the National Comprehensive Cancer Networks (NCCN) (2019) CPG criteria for FHx collected by a chatbot and evaluated by ontologies and web services in a previous study. Collected FHx met criteria from seven groups: Gene Mutation, Breast and Ovarian, Li-Fraumeni syndrome (LFS), Colorectal and Endometrial, Relative Meets Criteria, ACMG Only Criteria, and NCCN Testing. CPG Criteria were coded and matched across 12 ACMG sub-guidelines and 6 NCCN sub-guidelines for comparison purposes. RESULTS: The dataset contains 4915 records, of which 2221 met either ACMG or NCCN criteria and 2694 did not. There was significant overlap-1179 probands met both ACMG and NCCN criteria. The greatest similarities were for Gene Mutation and Breast and Ovarian criteria and the greatest disparity existed among Colorectal and Endometrial criteria. Only 156 positive gene mutations were reported and of the 2694 probands who did not meet criteria, 90.6% of them reported at least one cancer in their personal or family cancer history. CONCLUSION: Hereditary cancer CPGs are useful for identifying patients at risk of developing cancer based on FHx. This comparison shows that with the aid of chatbots, ontologies, and web services, CPGs can be more efficiently applied to identify patients at risk of hereditary cancer. Additionally this comparison examines similarities and differences between ACMG and NCCN and shows the importance of using both guidelines when evaluating hereditary cancer risk.

18.
JCO Clin Cancer Inform ; 5: 768-774, 2021 06.
Artigo em Inglês | MEDLINE | ID: mdl-34328797

RESUMO

PURPOSE: The purpose of this study was to examine racial differences in patient portal activation and research participation among patients with prostate cancer. MATERIALS AND METHODS: Participants were African American and White patients with prostate cancer who were treated with radical prostatectomy (n = 218). Patient portal activation was determined using electronic health records, and research participation was measured based on completion of a social determinants survey. RESULTS: Thirty-one percent of patients completed the social determinants survey and enrolled in the study and 66% activated a patient portal. The likelihood of enrolling in the study was reduced with greater levels of social deprivation (odds ratio [OR], 0.70; 95% CI, 0.50 to 0.98; P = .04). Social deprivation also had a signification independent association with patient portal activation along with racial background. African American patients (OR, 0.48; 95% CI, 0.23 to 0.91; P = .02) and those with greater social deprivation (OR, 0.58; 95% CI, 0.42 to 0.82; P = .002) had a lower likelihood of activating a patient portal compared with White patients and those with lower social deprivation. CONCLUSION: Although the majority of patients with prostate cancer activated their patient portal, rates of patient portal activation were lower among African American patients and those who lived in areas with greater social deprivation. Greater efforts are needed to promote patient portal activation among African American patients with prostate cancer and address access to health information technology among those who live in socially disadvantaged geographic areas.


Assuntos
Portais do Paciente , Neoplasias da Próstata , Negro ou Afro-Americano , Humanos , Masculino , Prostatectomia , Neoplasias da Próstata/terapia , Fatores Raciais
19.
J Cancer Policy ; 28: 100275, 2021 06.
Artigo em Inglês | MEDLINE | ID: mdl-35559905

RESUMO

BACKGROUND: The Affordable Care Act and subsequent reforms pose tradeoffs for racial-ethnic, rural, and sex-related groups in the United States experiencing disparities in BRCA1/2 genetic counseling and testing and colorectal cancer screening, calling for policy changes. METHODS: A working group of the American Public Health Association Genomics Forum Policy Committee engaged in monthly meetings to examine ongoing literature and identify policy alternatives in the coverage of cancer genetic services for marginalized groups. 589 items were collected; 408 examined. Efforts continued from February 2015 through September 2020. RESULTS: African Americans and Latinos have shown 7-8 % drops in uninsured rates since the Exchanges opened. The ACA has increased BRCA1/2 test availability while several disparities remain, including by sex. Rural testing and screening utilization rates have improved. Medicaid expansion and the inclusion of Medicare in the ACA have resulted in mixed improvements in colorectal cancer screening rates in marginalized groups. CONCLUSION: Cancer genetic testing and screening to date have only partially benefited from healthcare reforms. Sensitivity to cost concerns and further monitoring of emerging data are needed. A reduction in disparities depends on the availability of private insurance, Medicaid and Medicare to the marginalized. Attention to value-based design and the way cancer benefits are translated into actual testing and screening are crucial. POLICY SUMMARY: The findings suggest the need for further benefits-related health agency interpretation of and amendments to the ACA, continued Medicaid and innovative Medicare expansion, and incorporation of cancer services values-based considerations at several levels, aimed at reducing group disparities.


Assuntos
Neoplasias Colorretais , Patient Protection and Affordable Care Act , Idoso , Neoplasias Colorretais/diagnóstico , Testes Genéticos , Reforma dos Serviços de Saúde , Disparidades em Assistência à Saúde , Humanos , Cobertura do Seguro , Medicare , Estados Unidos
20.
J Genet Couns ; 30(1): 170-179, 2021 02.
Artigo em Inglês | MEDLINE | ID: mdl-32643297

RESUMO

As precision medicine becomes a mainstay in health care, the use of health information technology (IT) platforms will play an important role in the delivery of services across the cancer care continuum. Currently, there is both limited understanding about perceptions of health IT tools and barriers to their use among cancer genetic counselors. We assessed open-ended responses from a survey conducted among 128 board-certified cancer genetic counselors in the United States. We evaluated the utility of ten health IT tools and perceived barriers to adoption. Responses about characteristics of health IT tools that influence current use (i.e., technology-specific challenges) were deductively analyzed using the diffusion of innovations (DOI) characteristics. Responses about cancer genetic counselors' perceived challenges to adopting health IT tools (i.e., discipline-specific challenges) were inductively coded using a thematic approach. DOI innovation characteristics included mixed perceptions about the relative advantage, complexity, compatibility, trialability, and observability of tools based on the type of tool and perceived end-user. One-third of participants indicated that they were considering adopting or switching health IT tools. Common barriers to adoption included no perceived need for change, lack of organizational infrastructure, cost, and lack of decision-making power. Our findings indicate that addressing barriers to use and adoption of health IT may allow for expansion of these tools among cancer genetic counselors. Integrating health IT is critical for enhancing cancer genetic counselors' capacity to address patient needs and realizing the potential of precision medicine.


Assuntos
Conselheiros , Informática Médica , Neoplasias , Aconselhamento Genético , Humanos , Neoplasias/genética , Inquéritos e Questionários , Estados Unidos
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