Your browser doesn't support javascript.
loading
Mostrar: 20 | 50 | 100
Resultados 1 - 20 de 32
Filtrar
1.
J Genet Couns ; 2024 Jun 06.
Artigo em Inglês | MEDLINE | ID: mdl-38845384

RESUMO

Black women have a disproportionately high mortality rate from breast cancer, which is likely influenced by an intersection of environmental, cultural, economic, and social factors. Few published studies capture the experiences of Black women after a genetic diagnosis associated with increased risk for breast cancer. This study aims to explore the perspectives and experiences of Black women who carry a pathogenic variant associated with increased breast cancer risk and identify barriers to care for this population. We conducted semi-structured interviews with 16 participants with and without histories of breast cancer. The sample included representation across a range of demographic groups (e.g., income level, employment status, insurance status, and education level). Reflexive thematic analysis was the methodology used to analyze data. Five major themes emerged from participants' descriptions of their experiences during and after genetic testing: (1) searching for representation; (2) information enabling agency; (3) healthcare providers as facilitators or barriers to care; (4) self-identity impacting disclosure; and (5) evolving mental health and coping strategies. Participants identified barriers to care including challenging or misinformed healthcare providers, medical racism, and a lack of Black representation in the cancer community. This work deepens our understanding of the nuanced experiences of Black women across the continuum of cancer care, illustrates unmet needs, and provides a foundation for future research that includes the perspectives of Black women.

2.
Cancer Epidemiol Biomarkers Prev ; 33(1): 55-62, 2024 01 09.
Artigo em Inglês | MEDLINE | ID: mdl-37819271

RESUMO

BACKGROUND: Public health calls to ensure equity in genomics and precision medicine necessitate a closer examination of how these efforts might differentially affect access to genetic services across demographic subgroups. This study set out to examine racial/ethnic disparities along the cancer genetic service delivery continuum. METHODS: Retrospective data are drawn from 15 clinical sites across 6 U.S. States. Individuals who screened at-risk for hereditary cancer were: (i) referred/scheduled to see a genetic counselor (referral workflow), or (ii) offered genetic testing at the point-of-care (POC testing workflow). Logistic regression analyses evaluated the associations between race/ethnicity and several outcomes including appointment scheduling, genetic counseling, and genetic testing, controlling for demographics, clinical factors, and county-level covariates. RESULTS: A total of 14,527 patients were identified at-risk. Genetic testing uptake was significantly higher at POC sites than referral sites (34% POC vs. 11% referral, P < 0.001). Race/ethnicity was significantly associated with testing uptake among all sites, with non-Hispanic Blacks having lower odds of testing compared with non-Hispanic Whites [aOR = 0.84; 95% confidence interval (CI), 0.71-1.00; P = 0.049]. Moreover, this disparity was observed at referral sites, but not POC sites. Among patients scheduled, non-Hispanic Blacks had lower odds of counseling (aOR = 0.28; 95% CI, 0.17-0.47; P < 0.001). CONCLUSIONS: Findings suggest that factors influencing genetic counseling show rates may be driving disparities in genetic testing. IMPACT: Strategies to reduce barriers to seeing a genetic counselor, including modifications to clinical workflow, may help mitigate racial/ethnic disparities in genetic testing.


Assuntos
Disparidades em Assistência à Saúde , Neoplasias , Grupos Raciais , Humanos , Etnicidade/genética , Serviços em Genética , Neoplasias/genética , Neoplasias/terapia , Estudos Retrospectivos , Estados Unidos , Acessibilidade aos Serviços de Saúde
3.
Contemp Clin Trials ; 132: 107309, 2023 09.
Artigo em Inglês | MEDLINE | ID: mdl-37516165

RESUMO

BACKGROUND: A central challenge to precision medicine research efforts is the return of genetic research results in a manner that is effective, ethical, and efficient. Formal tests of alternate modalities are needed, particularly for racially marginalized populations that have historically been underserved in this context. METHODS: We are conducting a randomized controlled trial (RCT) to test scalable modalities for results return and to examine the clinical utility of returning genetic research results to a research cohort of Black women. The primary aim is to compare the efficacy of two communication modalities for results return: 1) a conventional modality that entails telephone disclosure by a Board-certified genetic counselor, and 2) an online self-guided modality that entails results return directly to participants, with optional genetic counselor follow-up via telephone. The trial is being conducted among participants in the Black Women's Health Study (BWHS), where targeted sequencing of 4000 participants was previously completed. RESULTS: Several ethical, legal, and social implications (ELSI) and challenges presented, which necessitated substantial revision of the original study protocol. Challenges included chain of custody, re-testing of research results in a CLIA lab, exclusion of VUS results, and digital literacy. Bioethical principles of autonomy, justice, non-maleficence, and beneficence were considered in the design of the study protocol. CONCLUSION: This study is uniquely situated to provide critical evidence on the effectiveness of alternative models for genetic results return and provide further insight into the factors influencing access and uptake of genetic information among U.S. Black women. CLINICALTRIALS: gov: NCT04407611.


Assuntos
Testes Genéticos , Neoplasias , Feminino , Humanos , Neoplasias/genética , Revelação , Comunicação , Pesquisa em Genética
4.
JCO Oncol Pract ; 19(10): 852-859, 2023 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-37384869

RESUMO

PURPOSE: Little is known about the uptake of germline genetic testing for patients with prostate cancer after 2018 guideline changes. This study characterizes genetic service referral patterns and predictors of referrals among patients with prostate cancer. METHODS: A retrospective cohort study using electronic health record data was conducted at an urban safety-net hospital. Individuals diagnosed with prostate cancer between January 2011 and March 2020 were eligible. The primary outcome was referral to genetic services after diagnosis. Using multivariable logistic regression, we identified patient characteristics associated with referrals. Interrupted time series analysis using a segmented Poisson regression examined whether guideline changes resulted in higher rates of referral after implementation. RESULTS: The cohort included 1,877 patients. Mean age was 65 years; 44% identified as Black, 32% White; and 17% Hispanic or Latino. The predominant insurance type was Medicaid (34%) followed by Medicare or private insurance (25% each). Most were diagnosed with local disease (65%), while 3% had regional and 9% had metastatic disease. Of the 1,877 patients, 163 (9%) had at least one referral to genetics. In multivariable models, higher age was negatively associated with referral (odds ratio [OR], 0.96; 95% CI, 0.94 to 0.98), while having regional (OR, 4.51; 95% CI, 2.44 to 8.34) or metastatic disease (OR, 4.64; 95% CI, 2.98 to 7.24) versus local only disease at diagnosis was significantly associated with referral. The time series analysis demonstrated a 138% rise in referrals 1 year after guideline implementation (relative risk, 3.992; 97.5% CI, 2.20 to 7.24; P < .001). CONCLUSION: Referrals to genetic services increased after guideline implementation. The strongest predictor of referral was clinical stage, suggesting opportunities to raise awareness about guideline eligibility for patients with advanced local or regional disease who may benefit from genetic services.

5.
Cancer Control ; 30: 10732748221143884, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-36946278

RESUMO

INTRODUCTION: The 2018 National Comprehensive Cancer Network guidelines for prostate cancer genetic testing expanded access to genetic services. Few studies have examined how this change has affected provider practice outside of large cancer centers. METHODS: We conducted a qualitative study of multi-disciplinary health care providers treating patients with prostate cancer at a safety-net hospital. Participants completed an interview that addressed knowledge, practices, and contextual factors related to providing genetic services to patients with prostate cancer. A thematic analysis using both inductive and deductive coding was undertaken. RESULTS: Seventeen providers completed interviews. Challenges in identifying eligible patients for genetic testing stemmed from a lack of a) systems that facilitate routine patient identification, and b) readily available family history data for eligibility determination. Providers identified non-medical patient characteristics that influenced their referral process, including health literacy, language, cultural beliefs, patient distress, and cost. Providers who see patients at different times along the cancer care continuum viewed benefits of testing differently. CONCLUSION: The use of digital technologies that systematically identify those eligible for genetic testing referrals may mitigate some but not all challenges identified in this study. Further research should determine how individual provider perceptions influence referral practices and patient access to genetics both within and across cancer specialties.


Assuntos
Testes Genéticos , Neoplasias da Próstata , Masculino , Humanos , Neoplasias da Próstata/diagnóstico , Neoplasias da Próstata/genética , Neoplasias da Próstata/terapia , Acessibilidade aos Serviços de Saúde
6.
Genet Med ; 25(5): 100802, 2023 05.
Artigo em Inglês | MEDLINE | ID: mdl-36906849

RESUMO

PURPOSE: National efforts have prioritized the identification of effective methods for increasing case ascertainment and delivery of evidence-based health care for individuals at elevated risk for hereditary cancers. METHODS: This study examined the uptake of genetic counseling and testing following the use of a digital cancer genetic risk assessment program implemented at 27 health care sites in 10 states using 1 of 4 clinical workflows: (1) traditional referral, (2) point-of-care scheduling, (3) point-of-care counseling/telegenetics, and (4) point-of-care testing. RESULTS: In 2019, 102,542 patients were screened and 33,113 (32%) were identified as at high risk and meeting National Comprehensive Cancer Network genetic testing criteria for hereditary breast and ovarian cancer, Lynch syndrome, or both. Among those identified at high risk, 5147 (16%) proceeded with genetic testing. Genetic counseling uptake was 11% among the sites with workflows that included seeing a genetic counselor before testing, with 88% of patients proceeding with genetic testing after counseling. Uptake of genetic testing across sites varied significantly by clinical workflow (6% referral, 10% point-of-care scheduling, 14% point-of-care counseling/telegenetics, and 35% point-of-care testing, P < .0001). CONCLUSION: Study findings highlight the potential heterogeneity of effectiveness attributable to different care delivery approaches for implementing digital hereditary cancer risk screening programs.


Assuntos
Neoplasias Colorretais Hereditárias sem Polipose , Síndromes Neoplásicas Hereditárias , Feminino , Humanos , Fluxo de Trabalho , Testes Genéticos , Síndromes Neoplásicas Hereditárias/diagnóstico , Síndromes Neoplásicas Hereditárias/genética , Aconselhamento Genético , Neoplasias Colorretais Hereditárias sem Polipose/diagnóstico , Neoplasias Colorretais Hereditárias sem Polipose/genética , Predisposição Genética para Doença
7.
Front Digit Health ; 4: 961128, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36386046

RESUMO

Individual, provider, clinic, and societal level barriers have been shown to undermine the potential impact of genetic testing. The current approach in the primary care setting places an exorbitant burden on both providers and patients. Current literature provides insight into how to address barriers across multiple levels (patient, provider, clinic, system) and at multiple stages in the testing process (identification, referral, counseling, and testing) but interventions have had limited success. After outlining the current approach to genetic testing in the primary care setting, including the barriers that prevent genetic testing uptake and the methods proposed to address these issues, we recommend integrating genetic testing into routine medical care through population-based testing. Success in efforts to increase the uptake of genetic testing will not occur without significant changes to the way genetic services are delivered. These changes will not be instantaneous but are critical in moving this field forward to realize the potential for cancer risk genetic assessment to reduce cancer burden.

8.
Healthcare (Basel) ; 10(5)2022 May 10.
Artigo em Inglês | MEDLINE | ID: mdl-35628017

RESUMO

Cancer is a significant burden, particularly to individuals of low socioeconomic status (SES). Genetic testing can provide information about an individual's risk of developing cancer and guide future screening and preventative services. However, there are significant financial barriers, particularly for individuals of low SES. This study used the Early Detection of Genetic Risk (EDGE) Study's patient baseline survey (n = 2329) to evaluate the relationship between socioeconomic status and interest in pursuing hereditary cancer genetic testing. Analysis was completed for two interest outcomes-overall interest in genetic testing and interest in genetic testing if the test were free or low cost. Many demographic and SES variables were predictors for interest in genetic testing, including education, income, and MacArthur Subjective Social Scale (SSS). After controlling for the healthcare system, age, and gender, having a higher education level and a higher household income were associated with greater general interest. Lower SSS was associated with greater interest in genetic testing if the test was free or low cost. If genetic testing is the future of preventative medicine, more work needs to be performed to make this option accessible to low-SES groups and to ensure that those services are used by the most underserved populations.

10.
Contemp Clin Trials ; 101: 106257, 2021 02.
Artigo em Inglês | MEDLINE | ID: mdl-33373667

RESUMO

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


Assuntos
Predisposição Genética para Doença , Neoplasias , Testes Genéticos , Humanos , Neoplasias/diagnóstico , Neoplasias/genética , Atenção Primária à Saúde , Medição de Risco
11.
J Genet Couns ; 30(2): 588-597, 2021 04.
Artigo em Inglês | MEDLINE | ID: mdl-33124135

RESUMO

Multivariate risk models are commonly used in clinical practice to estimate a woman's lifetime risk for breast cancer and assist in implementation of appropriate screening and risk reduction strategies. More recently, breast cancer polygenic risk scores (PRS) have been derived and integrated into these models to further improve risk estimation. While breast cancer PRS have been offered by two clinical diagnostic laboratories since 2017, little is known about the extent to which genetic counselors are ordering breast cancer PRS or incorporating the results into patient management. This study surveyed U.S. cancer genetic counselors from October 2019 to January 2020 to identify and understand their current practices with breast cancer PRS, to determine the impact of breast cancer PRS on patient management, and to anticipate future genetic counselor practices with breast cancer PRS. Fewer than half of respondents (43%, 51/120) had ordered breast cancer PRS and approximately one-third (35%, 16/46) reported that the PRS had changed their medical management recommendations. The majority of cancer genetic counselors had not ordered PRS, most commonly due to (a) lack of clinical guidelines (90%, 60/67), (b) insufficient evidence of clinical utility (88%, 59/67), and (c) lack of availability for patients of non-European ancestry (70%, 47/67). Of genetic counselors who had not ordered breast cancer PRS, only 10% (7/68) did not believe they would order PRS in the future. This is the first study to characterize genetic counselors' experiences with breast cancer PRS. Results from this study indicate that although breast cancer PRS have been clinically available for patients for several years, most cancer genetic counselors are not yet convinced they are ready to be incorporated into patient care.


Assuntos
Neoplasias da Mama , Conselheiros , Neoplasias da Mama/genética , Feminino , Aconselhamento Genético , Predisposição Genética para Doença , Humanos , Fatores de Risco , Inquéritos e Questionários
12.
Oncologist ; 25(12): 1039-1046, 2020 12.
Artigo em Inglês | MEDLINE | ID: mdl-32335989

RESUMO

PURPOSE: Misinformation and lack of information about cancer and its treatment pose significant challenges to delivering cancer care in resource-limited settings and may undermine patient engagement in care. We aimed to investigate patients' knowledge and attitudes toward cancer and its treatment and to adapt, implement, and evaluate a low-literacy cancer patient education booklet at the Hôpital Universitaire de Mirebalais (HUM) in rural Haiti. MATERIALS AND METHODS: A low-literacy cancer patient education booklet was adapted into Haitian Creole in collaboration with clinicians at HUM. Patients were recruited for structured interviews (n = 20) and two focus groups (n = 13) designed to explore patients' attitudes toward cancer and its treatment and to assess whether the booklet increased patients' knowledge via an investigator-designed knowledge test. RESULTS: Participants reported a subjective lack of knowledge about cancer and its treatments and described views of cancer as deadly or incurable. Patients of varying education levels valued receiving written materials that set expectations about cancer treatment and expressed a desire to share the booklet with caregivers and others in their community. Participants across all levels of education significantly increased their performance on a knowledge test after counseling using the booklet (p < .001). CONCLUSION: We found that an educational booklet about cancer developed in collaboration with local providers was well received by patients with variable literacy levels and improved their knowledge of cancer and its treatment in a resource-limited setting. Such educational materials have the potential to serve as tools to engage patients with cancer and their families in care. IMPLICATIONS FOR PRACTICE: Misinformation and lack of information pose significant challenges to delivering cancer care in resource-limited settings; however, there are often no culturally and literacy appropriate tools available to aid in patient education. This article shows that written educational materials are well received by patients of variable literacy levels and can be effective tools for increasing patients' knowledge of cancer and its treatment in a limited-resource setting. Furthermore, the authors have made their educational booklet, Cancer and You, freely available online and welcome the opportunity to connect with readers of The Oncologist interested in implementing this educational booklet in clinical care.


Assuntos
Neoplasias , Educação de Pacientes como Assunto , Cuidadores , Haiti , Educação em Saúde , Humanos , Neoplasias/terapia
13.
J Genet Couns ; 28(4): 836-846, 2019 08.
Artigo em Inglês | MEDLINE | ID: mdl-31058402

RESUMO

The duty to recontact continues to be revisited in the field of clinical genetics and is currently relevant for cancer genetic counseling given the transition from single-gene to multi-gene panel testing. We recruited cancer genetic counselors through the National Society of Genetic Counselors list-serv to complete an online survey assessing current practices and perspectives regarding recontacting patients about diagnostic genetic tests. Forty-one percent of respondents reported that they have recontacted patients to offer updated (new) diagnostic genetic testing (40/97). A majority (61%, 17/28), of genetic counselors who reported recontact specifically for panel testing indicated that the availability of management recommendations for genes not previously tested routinely was an important factor in the decision to recontact. All respondents who recontacted patients reported "improved patient care" as a perceived benefit. Respondents indicated that recontact is mostly a patient responsibility (49%), followed by a shared responsibility between the provider and patient (43%). Few respondents (2%) reported a uniform ethical duty to recontact patients regarding new and updated testing, while the majority (89%) felt that there was some degree of ethical duty. A greater percentage of those who reported past recontact practices reported intention to recontact in the future (p = 0.001). There is little consensus among the genetic counselor respondents about how to approach the recontacting of patients to offer updated genetic testing.


Assuntos
Conselheiros , Dever de Recontatar , Ética Profissional , Aconselhamento Genético/normas , Testes Genéticos/normas , Aconselhamento Genético/ética , Humanos , Assistência ao Paciente
14.
J Clin Oncol ; 35(6): 636-644, 2017 Feb 20.
Artigo em Inglês | MEDLINE | ID: mdl-27937091

RESUMO

Purpose Significant concerns exist regarding the potential for unwarranted behavior changes and the overuse of health care resources in response to direct-to-consumer personal genomic testing (PGT). However, little is known about customers' behaviors after PGT. Methods Longitudinal surveys were given to new customers of 23andMe (Mountain View, CA) and Pathway Genomics (San Diego, CA). Survey data were linked to individual-level PGT results through a secure data transfer process. Results Of the 1,042 customers who completed baseline and 6-month surveys (response rate, 71.2%), 762 had complete cancer-related data and were analyzed. Most customers reported that learning about their genetic risk of cancers was a motivation for testing (colorectal, 88%; prostate, 95%; breast, 94%). No customers tested positive for pathogenic mutations in highly penetrant cancer susceptibility genes. A minority of individuals received elevated single nucleotide polymorphism-based PGT cancer risk estimates (colorectal, 24%; prostate, 24%; breast, 12%). At 6 months, customers who received elevated PGT cancer risk estimates were not significantly more likely to change their diet, exercise, or advanced planning behaviors or engage in cancer screening, compared with individuals at average or reduced risk. Men who received elevated PGT prostate cancer risk estimates changed their vitamin and supplement use more than those at average or reduced risk (22% v 7.6%, respectively; adjusted odds ratio, 3.41; 95% CI, 1.44 to 8.18). Predictors of 6-month behavior include baseline behavior (exercise, vitamin or supplement use, and screening), worse health status (diet and vitamin or supplement use), and older age (advanced planning, screening). Conclusion Most adults receiving elevated direct-to-consumer PGT single nucleotide polymorphism-based cancer risk estimates did not significantly change their diet, exercise, advanced care planning, or cancer screening behaviors.


Assuntos
Triagem e Testes Direto ao Consumidor/psicologia , Testes Genéticos/métodos , Neoplasias/genética , Neoplasias/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Comportamento do Consumidor , Triagem e Testes Direto ao Consumidor/métodos , Feminino , Predisposição Genética para Doença , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Polimorfismo de Nucleotídeo Único , Adulto Jovem
15.
PLoS One ; 11(1): e0145215, 2016.
Artigo em Inglês | MEDLINE | ID: mdl-26771309

RESUMO

Well-developed point-of-care (POC) cancer screening tools have the potential to provide better cancer care to patients in both developed and developing countries. However, new medical technology will not be adopted by medical providers unless it addresses a population's existing needs and end-users' preferences. The goals of our study were to assess primary care providers' level of awareness, interest, and preferences in using POC cancer screening technology in their practice and to provide guidelines to biomedical engineers for future POC technology development. A total of 350 primary care providers completed a one-time self-administered online survey, which took approximately 10 minutes to complete. A $50 Amazon gift card was given as an honorarium for the first 100 respondents to encourage participation. The description of POC cancer screening technology was provided in the beginning of the survey to ensure all participants had a basic understanding of what constitutes POC technology. More than half of the participants (57%) stated that they heard of the term "POC technology" for the first time when they took the survey. However, almost all of the participants (97%) stated they were either "very interested" (68%) or "somewhat interested" (29%) in using POC cancer screening technology in their practice. Demographic characteristics such as the length of being in the practice of medicine, the percentage of patients on Medicaid, and the average number of patients per day were not shown to be associated with the level of interest in using POC. These data show that there is a great interest in POC cancer screening technology utilization among this population of primary care providers and vast room for future investigations to further understand the interest and preferences in using POC cancer technology in practice. Ensuring that the benefits of new technology outweigh the costs will maximize the likelihood it will be used by medical providers and patients.


Assuntos
Conscientização , Detecção Precoce de Câncer/métodos , Pessoal de Saúde , Neoplasias/diagnóstico , Neoplasias/epidemiologia , Sistemas Automatizados de Assistência Junto ao Leito , Atenção Primária à Saúde , Competência Clínica , Fatores Epidemiológicos , Feminino , Necessidades e Demandas de Serviços de Saúde , Humanos , Masculino , Inquéritos e Questionários , Tecnologia
16.
Genet Med ; 17(7): 545-53, 2015 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-25341112

RESUMO

PURPOSE: On 14 May 2013, actress Angelina Jolie disclosed that she had a BRCA1 mutation and underwent a prophylactic bilateral mastectomy. This study documents the impact of her disclosure on information-seeking behavior, specifically that regarding online genetics and risk reduction resources available from the National Cancer Institute. METHODS: Using Adobe Analytics, daily page views for 11 resources were tracked from 23 April 2013 through 25 June 2013. Usage data were also obtained for four resources over a 2-year period (2012-2013). Source of referral that viewers used to locate a specific resource was also examined. RESULTS: There was a dramatic and immediate increase in traffic to the National Cancer Institute's online resources. The Preventive Mastectomy fact sheet received 69,225 page views on May 14, representing a 795-fold increase as compared with the previous Tuesday. A fivefold increase in page views was observed for the PDQ Genetics of Breast and Ovarian Cancer summary in the same time frame. A substantial increase, from 0 to 49%, was seen in referrals from news outlets to four resources from 7 May to 14 May. CONCLUSION: Celebrity disclosures can dramatically influence online information-seeking behaviors. Efforts to capitalize on these disclosures to ensure easy access to accurate information are warranted.


Assuntos
Revelação , Pessoas Famosas , Comportamento de Busca de Informação , Neoplasias da Mama/prevenção & controle , Feminino , Genes BRCA1 , Genes BRCA2 , Predisposição Genética para Doença , Testes Genéticos/métodos , Humanos , Mastectomia , Neoplasias Ovarianas/prevenção & controle
17.
Am J Prev Med ; 43(4): 392-8, 2012 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-22992357

RESUMO

BACKGROUND: Family Healthware™, a tool developed by the CDC, is a self-administered web-based family history tool that assesses familial risk for six diseases (coronary heart disease; stroke; diabetes; and colon, breast, and ovarian cancers) and provides personalized prevention messages based on risk. The Family Healthware Impact Trial (FHITr) set out to examine the clinical utility of presenting personalized preventive messages tailored to family history risk for improving health behaviors. PURPOSE: The purpose of this study was to examine the impact of Family Healthware on modifying disease risk perceptions, particularly among those who initially underestimated their risk for certain diseases. DESIGN: A total of 3786 patients were enrolled in a cluster-randomized trial to evaluate the clinical utility of Family Healthware. SETTING/PARTICIPANTS: Participants were recruited from 41 primary care practices among 13 states between 2005 and 2007. MAIN OUTCOME MEASURES: Perceived risk for each disease was assessed at baseline and 6-month follow-up using a single-item comparative risk question. Analyses were completed in March 2012. RESULTS: Compared to controls, Family Healthware increased risk perceptions among those who underestimated their risk for heart disease (15% vs 9%, p<0.005); stroke (11% vs 8%, p<0.05); diabetes (18% vs 11%, p<0.05); and colon cancer (17% vs 10%, p=0.05) but not breast or ovarian cancers. The majority of underestimators did not shift in their disease risk perceptions. CONCLUSIONS: Family Healthware was effective at increasing disease risk perceptions, particularly for metabolic conditions, among those who underestimated their risk. Results from this study also demonstrate the relatively resistant nature of risk perceptions. TRIAL REGISTRATION: This study is registered at clinicaltrials.govNCT00164658.


Assuntos
Atitude Frente a Saúde , Doença Crônica/epidemiologia , Saúde da Família , Comportamentos Relacionados com a Saúde , Internet , Centers for Disease Control and Prevention, U.S. , Análise por Conglomerados , Feminino , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade , Atenção Primária à Saúde , Risco , Medição de Risco/métodos , Fatores de Risco , Estados Unidos
18.
Fam Cancer ; 11(3): 539-44, 2012 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-22419176

RESUMO

Practice changes in cancer genetic counseling have occurred to meet the demand for cancer genetic services. As cancer genetics continues to impact not only prevention strategies but also treatment decisions, current cancer genetic counseling models will need to be tailored to accommodate emerging clinical indications. These clinical indications include: surgical prophylactic bilateral mastectomy candidates, PARP-inhibitor candidates, patients with abnormal tumor screening results for Lynch syndrome, and post-test counseling patients (after genetic testing is ordered by another healthcare provider). A more personalized, multidisciplinary approach to selecting the best framework, for a given clinical indication, may become increasingly necessary in this era of personalized medicine.


Assuntos
Neoplasias da Mama/genética , Neoplasias Colorretais Hereditárias sem Polipose/genética , Aconselhamento Genético/tendências , Medicina de Precisão , Neoplasias da Mama/prevenção & controle , Neoplasias da Mama/cirurgia , Neoplasias Colorretais Hereditárias sem Polipose/diagnóstico , Feminino , Heterozigoto , Humanos , Instabilidade de Microssatélites
19.
Genet Med ; 13(11): 956-65, 2011 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-22075527

RESUMO

PURPOSE: To assess the effectiveness of computerized familial risk assessment and tailored messages for identifying individuals for targeted cancer prevention strategies and motivating behavior change. METHODS: We conducted a randomized clinical trial in primary care patients aged 35-65 years using Family Healthware, a self-administered, internet-based tool that collects family history for six common diseases including breast cancer, colon cancer, and ovarian cancer, stratifies risk into three tiers, and provides tailored prevention messages. Cancer screening adherence and consultation were measured at baseline and 6-month follow-up. RESULTS: Of 3283 participants, 34% were at strong or moderate risk of at least one of the cancers. Family Healthware identified additional participants for whom earlier screening (colon cancer, 4.4%; breast cancer, women ages: 35-39 years, 9%) or genetic assessment (colon cancer, 2.5%; breast cancer, 10%; and ovarian cancer, 4%) may be indicated. Fewer than half were already adherent with risk-based screening. Screening adherence improved for all risk categories with no difference between intervention and control groups. Consultation with specialists did not differ between groups. CONCLUSION: Family Healthware identified patients for intensified cancer prevention. Engagement of clinicians and patients, integration with clinical decision support, and inclusion of nonfamilial risk factors may be necessary to achieve the full potential of computerized risk assessment.


Assuntos
Detecção Precoce de Câncer/métodos , Atenção Primária à Saúde/estatística & dados numéricos , Encaminhamento e Consulta/estatística & dados numéricos , Software , Adulto , Idoso , Neoplasias da Mama/diagnóstico , Neoplasias da Mama/genética , Neoplasias da Mama/prevenção & controle , Neoplasias do Colo/diagnóstico , Neoplasias do Colo/genética , Neoplasias do Colo/prevenção & controle , Saúde da Família , Feminino , Humanos , Internet , Masculino , Pessoa de Meia-Idade , Neoplasias/diagnóstico , Neoplasias/genética , Neoplasias/prevenção & controle , Neoplasias Ovarianas/diagnóstico , Neoplasias Ovarianas/genética , Neoplasias Ovarianas/prevenção & controle , Medição de Risco/métodos , Medição de Risco/estatística & dados numéricos , Fatores de Risco , Inquéritos e Questionários
20.
Ann Fam Med ; 9(1): 3-11, 2011.
Artigo em Inglês | MEDLINE | ID: mdl-21242555

RESUMO

PURPOSE: We wanted to determine the impact of automated family history assessment and tailored messages for coronary heart disease, stroke, diabetes, colorectal, breast, and ovarian cancer on preventive behaviors compared with a standard preventive message. METHODS: The study was a cluster-randomized clinical trial that included 41 primary care practices, the majority in the Midwest, using Family Healthware, a self-administered, Web-based tool that assesses familial risk for the diseases and provides personalized risk-tailored messages. Patients in the control group received an age- and sex-specific health message related to lifestyle and screening. Smoking cessation, fruit and vegetable intake, physical activity, aspirin use, blood pressure, and cholesterol and blood glucose screening were assessed at baseline and 6 months after the intervention. RESULTS: Of 4,248 participants, 3,344 (78%) completed the study. Participants were white (91%), female (70%), and insured (97%), and had a mean age of 50.6 years (range 35-65 years). Intervention participants were more likely to increase daily fruit and vegetable consumption from 5 or fewer servings a day to 5 or more servings a day (OR = 1.29; 95% confidence interval [CI], 1.05-1.58) and to increase physical activity (OR = 1.47; 95% CI, 1.08-1.98) to 5 to 6 times a week for 30 minutes or more a week. The absolute differences in proportion were 3% and 4%, respectively. Intervention participants were less likely to move from not having cholesterol screening in the last 5 years to having their cholesterol measured within 5 years (OR = 0.34; 95% CI, 0.17-0.67), with an absolute difference of 15%. CONCLUSIONS: Messages tailored to an individual's familial risk for 6 common diseases modestly increased self-reported physical activity and fruit and vegetable intake but reduced the likelihood of receiving cholesterol screening.


Assuntos
Doença Crônica/prevenção & controle , Comunicação , Comportamentos Relacionados com a Saúde , Promoção da Saúde/métodos , Internet , Comportamento de Redução do Risco , Adulto , Aspirina/uso terapêutico , Glicemia , Pressão Sanguínea , Neoplasias da Mama/prevenção & controle , Colesterol/sangue , Doença das Coronárias/prevenção & controle , Diabetes Mellitus Tipo 2/prevenção & controle , Dieta , Exercício Físico , Feminino , Humanos , Estilo de Vida , Masculino , Programas de Rastreamento , Pessoa de Meia-Idade , Neoplasias Ovarianas/prevenção & controle , Avaliação de Programas e Projetos de Saúde , Fatores de Risco , Fumar , Acidente Vascular Cerebral/prevenção & controle
SELEÇÃO DE REFERÊNCIAS
DETALHE DA PESQUISA