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1.
J Community Genet ; 9(3): 263-276, 2018 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-29197036

RESUMO

As genetics and genomics become part of mainstream medicine, these advances have the potential to either reduce or exacerbate health disparities. Relatively, little research has explored the quality of genetic counseling communication experienced by limited English proficiency patients, especially Chinese Americans. We observed and audio recorded genetic counseling appointments (n = 40) of low-income, limited English-proficient Chinese patients (n = 25) and conducted post-visit interviews (n = 17) using stimulated recall to examine patient understanding of the communication. Standard techniques based in grounded theory, including iterative data review and multiple coders, were used to analyze observation fieldnotes and interview transcripts and to identify these themes: (1) strong beliefs in environmental causes of cancer and skepticism about genetic causes, (2) willingness to undergo genetic testing despite skepticism of hereditary cause of cancer, (3) misunderstanding of key information needed to make informed decisions about testing and screening/prevention options, (4) variable quality of medical interpretation, and (5) selective family communication about cancer and genetic counseling and testing. Together, these themes describe substantial gaps in communication and identify the need for genetic counseling techniques and skills that enable counselors to communicate more effectively across language, literacy, and culture. Understanding the mechanisms of inheritance and the implications of genetic test results can be challenging for anyone, and it is exceptionally daunting for those who have limited English proficiency and/or low literacy. For Chinese immigrant patients to reap the full benefits of genetic counseling and testing, effective communication is essential. Research on interventions to improve communication is needed to ensure that disparities do not widen as genomic medicine reaches a more diverse population.

2.
J Community Support Oncol ; 15(1): 20-27, 2017.
Artigo em Inglês | MEDLINE | ID: mdl-28944260

RESUMO

BACKGROUND: A comprehensive assessment of Spanish-speaking breast cancer survivors' (SSBCS) survivorship needs is lacking. OBJECTIVE: Assess SSBCS' post-treatment symptom management, psychosocial, and informational needs. METHODS: 118 telephone surveys and 25 in-person semi-structured interviews with SSBCS, and semi-structured interviews with 5 support providers and 4 physicians who serve SSBCS from 5 Northern California counties. RESULTS: Surveys identified the most bothersome (bothered by it in the past month "somewhat/quite a bit/a lot") physical symptoms as: joint pain, fatigue, hot flashes, numbness in hands/feet, and vaginal dryness. The most bothersome emotional symptoms were thoughts of recurrence/new cancers, depression/sadness, anxieties, and stress. Seven themes emerged from interviews: 1) unmet physical symptom management needs; 2) social support from family/friends often ends when treatment is completed; 3) challenges resuming roles; 5) sense of abandonment by health care system when treatment ends; 6) need for formal transition from active treatment to follow-up care; 6) fear of recurrence especially when obtaining follow-up care; and 7) desire for information on late effects of initial treatments and side effects of hormonal treatments. Based on survey and interview results, we present a conceptual framework for survivorship care interventions for SSBCS. LIMITATIONS: Sample may not represent SSBCS' concerns seen outside of Northern California hospitals. CONCLUSIONS: Physical and psychosocial symptoms were common. SSBCS need culturally appropriate survivorship care programs that address symptom management, psychosocial concerns, follow-up care, and healthy lifestyles.

4.
J Genet Couns ; 26(5): 1090-1104, 2017 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-28289853

RESUMO

As genetics and genomics become part of mainstream Medicine, these advances have the potential to reduce or exacerbate health disparities. Gaps in effective communication (where all parties share the same meaning) are widely recognized as a major contributor to health disparities. The purpose of this study was to examine GC-patient communication in real time, to assess its effectiveness from the patient perspective, and then to pilot intervention strategies to improve the communication. We observed 64 English-, 35 Spanish- and 25 Chinese-speaking (n = 124) public hospital patients and 10 GCs in 170 GC appointments, and interviewed 49 patients who were offered testing using the audio recordings to stimulate recall and probe specific aspects of the communication. Data analyses were conducted using grounded theory methods and revealed a fundamental mismatch between the information provided by GCs and the information desired and meaningful to patients. Several components of the communication that contributed to this mismatch and often resulted in ineffective communication included: (1) too much information; (2) complex terminology and conceptually difficult presentation of information; (3) information perceived as not relevant by the patient; (4) unintentional inhibition of patient engagement and question-asking; (5) vague discussions of screening and prevention recommendations. Our findings indicate a need to transform the standard model of genetic counseling communication using evidence-based principles and strategies from other fields of Medicine. The high rates of limited health literacy in the US, increasing access of diverse populations to genetic services, and growing complexity of genetic information have created a perfect storm. If not directly addressed, this convergence is likely to exacerbate health disparities in the genomic age.


Assuntos
Diversidade Cultural , Aconselhamento Genético/estatística & dados numéricos , Letramento em Saúde/estatística & dados numéricos , Disparidades em Assistência à Saúde , Neoplasias/genética , Populações Vulneráveis/estatística & dados numéricos , Feminino , Humanos , Masculino , Pessoa de Meia-Idade
5.
Neuro Oncol ; 19(1): 99-108, 2017 01.
Artigo em Inglês | MEDLINE | ID: mdl-27576871

RESUMO

BACKGROUND: The optimal therapeutic approach for patients with AIDS-related primary central nervous system lymphoma (AR-PCNSL) remains undefined. While its incidence declined substantially with combination antiretroviral therapy (cART), AR-PCNSL remains a highly aggressive neoplasm for which whole brain radiotherapy (WBRT) is considered a standard first-line intervention. METHODS: To identify therapy-related factors associated with favorable survival, we first retrospectively analyzed outcomes of AR-PCNSL patients treated at San Francisco General Hospital, a public hospital with a long history of dedicated care for patients with HIV and AIDS-related malignancies. Results were validated in a retrospective, multicenter analysis that evaluated all newly diagnosed patients with AR-PCNSL treated with cART plus high-dose methotrexate (HD-MTX). RESULTS: We provide evidence that CD4+ reconstitution with cART administered during HD-MTX correlates with long-term survival among patients with CD4 <100. This was confirmed in a multicenter analysis which demonstrated that integration of cART regimens with HD-MTX was generally well tolerated and resulted in longer progression-free survival than other treatments. No profound differences in immunophenotype were identified in an analysis of AR-PCNSL tumors that arose in the pre- versus post-cART eras. However, we detected evidence for a demographic shift, as the proportion of minority patients with AR-PCNSL increased since advent of cART. CONCLUSION: Long-term disease-free survival can be achieved in AR-PCNSL, even among those with histories of opportunistic infections, limited access to health care, and medical non-adherence. Given this, as well as the long-term toxicities of WBRT, we recommend that integration of cART plus first-line HD-MTX be considered for all patients with AR-PCNSL.


Assuntos
Antirretrovirais/uso terapêutico , Neoplasias do Sistema Nervoso Central/mortalidade , Irradiação Craniana , Linfoma Relacionado a AIDS/mortalidade , Metotrexato/uso terapêutico , Adulto , Idoso , Antimetabólitos Antineoplásicos/uso terapêutico , Neoplasias do Sistema Nervoso Central/patologia , Neoplasias do Sistema Nervoso Central/terapia , Terapia Combinada , Feminino , Seguimentos , Humanos , Linfoma Relacionado a AIDS/patologia , Linfoma Relacionado a AIDS/terapia , Masculino , Pessoa de Meia-Idade , Estadiamento de Neoplasias , Prognóstico , Estudos Retrospectivos , Taxa de Sobrevida
6.
PLoS One ; 11(12): e0168383, 2016.
Artigo em Inglês | MEDLINE | ID: mdl-27992491

RESUMO

PURPOSE: Despite the Institute of Medicine's (IOM) 2005 recommendation, few care organizations have instituted standard survivorship care plans (SCPs). Low health literacy and low English proficiency are important factors to consider in SCP development. Our study aimed to identify information needs and survivorship care plan preferences of low literacy, multi-lingual patients to support the transition from oncology to primary care and ongoing learning in survivorship. METHODS: We conducted focus groups in five languages with African American, Latina, Russian, Filipina, White, and Chinese medically underserved breast cancer patients. Topics explored included the transition to primary care, access to information, knowledge of treatment history, and perspectives on SCPs. RESULTS: Analysis of focus group data identified three themes: 1) the need for information and education on the transition between "active treatment" and "survivorship"; 2) information needed (and often not obtained) from providers; and 3) perspectives on SCP content and delivery. CONCLUSIONS: Our data point to the need to develop a process as well as written information for medically underserved breast cancer patients. An SCP document will not replace direct communication with providers about treatment, symptom management and transition, a communication that is missing in participating safety-net patients' experiences of cancer care. Women turned to peer support and community-based organizations in the absence of information from providers. IMPLICATIONS FOR CANCER SURVIVORS: "Clear and effective" communication of survivorship care for safety-net patients requires dedicated staff trained to address wide-ranging information needs and uncertainties.


Assuntos
Neoplasias da Mama/psicologia , Sobreviventes/psicologia , Adulto , Idoso , Continuidade da Assistência ao Paciente , Feminino , Grupos Focais , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Alfabetização , Pessoa de Meia-Idade , Taxa de Sobrevida , Estados Unidos
7.
Am J Public Health ; 106(10): 1842-8, 2016 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-27552275

RESUMO

OBJECTIVES: To determine the effectiveness of a statewide telephone service in identifying low-income women at risk for hereditary breast and ovarian cancer and referring them to free genetic counseling. METHODS: From June 2010 through August 2011, eligible callers to California's toll-free breast and cervical cancer telephone service were screened for their family histories of breast and ovarian cancer. High-risk women were identified and called for a baseline survey and randomization to an immediate offer of genetic counseling or a mailed brochure on how to obtain counseling. Clinic records were used to assess receipt of genetic counseling after 2 months. RESULTS: Among 1212 eligible callers, 709 (58.5%) agreed to answer family history questions; 102 (14%) were at high risk (25% Hispanic, 46% White, 10% Black, 16% Asian, 3% of other racial/ethnic backgrounds). Of the high-risk women offered an immediate appointment, 39% received counseling during the intervention period, as compared with 4.5% of those receiving the brochure. CONCLUSIONS: A public health approach to the rare but serious risk of hereditary breast and ovarian cancer can be successful when integrated into the efforts of existing safety net organizations.


Assuntos
Neoplasias da Mama/genética , Aconselhamento Genético/métodos , Neoplasias Ovarianas/genética , Pobreza , Encaminhamento e Consulta , Negro ou Afro-Americano , Povo Asiático , Neoplasias da Mama/diagnóstico , California , Feminino , Predisposição Genética para Doença , Testes Genéticos/métodos , Hispânico ou Latino , Humanos , Pessoa de Meia-Idade , Neoplasias Ovarianas/diagnóstico , Fatores de Risco , População Branca
8.
Pain ; 157(4): 892-900, 2016 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-26683234

RESUMO

The purposes of this study, in oncology outpatients receiving chemotherapy (n = 926), were to: describe the occurrence of different types of pain (ie, no pain, only noncancer pain [NCP], only cancer pain [CP], or both CP and NCP) and evaluate for differences in demographic, clinical, and symptom characteristics, and quality of life (QOL) among the 4 groups. Patients completed self-report questionnaires on demographic and symptom characteristics and QOL. Patients who had pain were asked to indicate if it was or was not related to their cancer or its treatment. Medical records were reviewed for information on cancer and its treatments. In this study, 72.5% of the patients reported pain. Of the 671 who reported pain, 21.5% reported only NCP, 37.0% only CP, and 41.5% both CP and NCP. Across the 3 pain groups, worst pain scores were in the moderate to severe range. Compared with the no pain group, patients with both CP and NCP were significantly younger, more likely to be female, have a higher level of comorbidity, and a poorer functional status. In addition, these patients reported: higher levels of depression, anxiety, fatigue, and sleep disturbance; lower levels of energy and attentional function; and poorer QOL. Patients with only NCP were significantly older than the other 3 groups. The most common comorbidities in the NCP group were back pain, hypertension, osteoarthritis, and depression. Unrelieved CP and NCP continue to be significant problems. Oncology outpatients need to be assessed for both CP and NCP conditions.


Assuntos
Dor do Câncer/fisiopatologia , Depressão/fisiopatologia , Neoplasias , Qualidade de Vida , Adulto , Idoso , Ansiedade/psicologia , Depressão/psicologia , Feminino , Humanos , Pessoa de Meia-Idade , Neoplasias/psicologia , Pacientes Ambulatoriais , Transtornos do Sono-Vigília/psicologia , Inquéritos e Questionários
9.
Am J Public Health ; 105 Suppl 3: e55-63, 2015 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-25905829

RESUMO

OBJECTIVES: We evaluated a community-based, translational stress management program to improve health-related quality of life in Spanish-speaking Latinas with breast cancer. METHODS: We adapted a cognitive-behavioral stress management program integrating evidence-based and community best practices to address the needs of Latinas with breast cancer. Spanish-speaking Latinas with breast cancer were randomly assigned to an intervention or usual-care control group. Trained peers delivered the 8-week intervention between February 2011 and February 2014. Primary outcomes were breast cancer-specific quality of life and distress, and general symptoms of distress. RESULTS: Of 151 participants, 95% were retained at 6 months (between May 2011 and May 2014). Improvements in quality of life from baseline to 6 months were greater for the intervention than the control group on physical well-being, emotional well-being, breast cancer concerns, and overall quality of life. Decreases from baseline to 6 months were greater for the intervention group on depression and somatization. CONCLUSIONS: Results suggest that translation of evidence-based programs can reduce psychosocial health disparities in Latinas with breast cancer. Integration of this program into community-based organizations enhances its dissemination potential.


Assuntos
Neoplasias da Mama/etnologia , Neoplasias da Mama/psicologia , Serviços de Saúde Comunitária/organização & administração , Hispânico ou Latino/psicologia , Grupo Associado , Estresse Psicológico/prevenção & controle , Adulto , Terapia Cognitivo-Comportamental , Pesquisa Participativa Baseada na Comunidade , Feminino , Disparidades nos Níveis de Saúde , Humanos , Seleção de Pacientes , Estresse Psicológico/etiologia , Resultado do Tratamento
10.
J Pain ; 15(12): 1238-47, 2014 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-25439319

RESUMO

UNLABELLED: Persistent pain following breast cancer surgery is well documented. However, it is not well characterized in terms of the anatomic site affected (ie, breast, arm). In 2 separate growth mixture modeling analyses, we identified subgroups of women (N = 398) with distinct breast pain and arm pain trajectories. The fact that these latent classes differed by anatomic site, types of tissue affected, and neural innervation patterns suggests the need for separate evaluations of these distinct persistent pain conditions. The purposes of this companion study were to identify demographic and clinical characteristics that differed between the 2 arm pain classes and determine if differences existed over time in sensitivity in the upper inner arm and axillary lymph node dissection sites, pain qualities, pain interference, and hand and arm function, as well as to compare findings with persistent breast pain. Higher occurrence rates for depression and lymphedema were found in the moderate arm pain class. Regardless of pain group membership, sensory loss was observed in the upper inner arm and axillary lymph node dissection site. Arm pain was described similarly to neuropathic pain and interfered with daily functioning. Persistent arm pain was associated with sustained impairments in shoulder mobility. PERSPECTIVE: For persistent breast and arm pain, changes in sensation following breast cancer surgery were notable. Persistent arm pain was associated with sustained interference with daily functioning and upper body mobility impairments. Long-term management of persistent pain following breast cancer surgery is warranted to improve the quality of survivorship for these women.


Assuntos
Braço/fisiopatologia , Neoplasias da Mama/cirurgia , Mama/fisiopatologia , Dor Pós-Operatória/fisiopatologia , Mama/cirurgia , Neoplasias da Mama/fisiopatologia , Feminino , Força da Mão/fisiologia , Humanos , Pessoa de Meia-Idade , Atividade Motora/fisiologia , Medição da Dor , Amplitude de Movimento Articular/fisiologia , Ombro/fisiopatologia , Fatores de Tempo
11.
Clin Trials ; 11(2): 230-8, 2014 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-24577971

RESUMO

BACKGROUND: Latinas with breast cancer suffer symptom and psychosocial health disparities. Effective interventions have not been developed for or tested in this population. PURPOSE: We describe community-based participatory research methods used to develop and implement the Nuevo Amanecer program, a culturally tailored, peer-delivered cognitive-behavioral stress management intervention for low-income Spanish-speaking Latinas with breast cancer, and unique considerations in implementing a randomized controlled trial to test the program in community settings. METHODS: We applied an implementation science framework to delineate the methodological phases used to develop and implement the Nuevo Amanecer program and trial, emphasizing community engagement processes. RESULTS: In phase 1, we established project infrastructure: academic and community co-principal investigators, community partners, community advisory board, steering committee, and funding. In phase 2, we identified three program inputs: formative research, a community best-practices model, and an evidence-based intervention tested in non-Latinas. In phase 3, we created the new program by integrating and adapting intervention components from the three sources, making adaptations to accommodate low literacy, Spanish language, cultural factors, community context, and population needs. In phase 4, we built community capacity for the program and trial by training field staff (recruiters and interventionists embedded in community sites), compensating field staff, and creating a system for identifying potential participants. In phase 5, we implemented and monitored the program and trial. Engaging community partners in all phases has resulted in a new, culturally tailored program that is suitable for newly diagnosed Latinas with breast cancer and a trial that is acceptable and supported by community and clinical partners. Lessons learned Engagement of community-based organizations and cancer survivors as research partners and hiring recruiters and interventionists from the community were critical to successful implementation in community settings. Having culturally and linguistically competent research staff with excellent interpersonal skills facilitated implementation. Facilitating and maintaining excellent communication among community partners was imperative to troubleshoot implementation issues. Randomization was challenging due to community concerns about assigning women to a control group. Patient privacy regulations and the need for extensive outreach to establish relationships between community partners and clinical sites hampered initial recruitment. LIMITATIONS: These were resource-intensive processes to develop and implement the program that need to be compared to less-intensive alternatives. CONCLUSION: Engaging community members in design and implementation of community-based programs and trials enhances cultural appropriateness and congruence with the community context. If the randomized trial demonstrates that the intervention is effective, it will fill a gap in evidence-based programs to address ethnic disparities in quality of life among Spanish-speaking Latinas with breast cancer.


Assuntos
Neoplasias da Mama/psicologia , Pesquisa Participativa Baseada na Comunidade/métodos , Hispânico ou Latino/psicologia , Seleção de Pacientes , Grupo Associado , Ensaios Clínicos Controlados Aleatórios como Assunto/métodos , Estresse Psicológico/terapia , Adulto , Terapia Cognitivo-Comportamental/métodos , Feminino , Disparidades nos Níveis de Saúde , Humanos
12.
Eur J Oncol Nurs ; 18(3): 242-53, 2014 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-24485012

RESUMO

PURPOSE: In this prospective, longitudinal study, we extend our findings on persistent breast pain in patients (n = 398) following breast cancer surgery and evaluate the prevalence and characteristics of persistent pain in the arm/shoulder. In addition, differences in the severity of common symptoms and quality of life outcomes measured prior to surgery, among the arm pain classes, were evaluated. METHODS AND SAMPLE: Patients were recruited from Breast Care Centers located in a Comprehensive Cancer Center, two public hospitals, and four community practices. Patients were assessed prior to and monthly for six months following breast cancer surgery. RESULTS: Using growth mixture modeling, patients were classified into no (41.6%), mild (23.6%), and moderate (34.8%) arm pain classes based on ratings of worst arm/shoulder pain. Compared to the no pain class, patients in the moderate pain class were significantly younger, had a higher body mass index, and were more likely to report preoperative breast pain and swelling in the affected breast. In addition, patients in the moderate pain class reported higher levels of depression, anxiety, and sleep disturbance than the no pain class. CONCLUSIONS: Findings suggest that approximately 35% of women experience persistent levels of moderate arm/shoulder pain in the first six months following breast cancer surgery. Moderate arm/shoulder pain is associated with clinically meaningful decrements in functional status and quality of life.


Assuntos
Neoplasias da Mama/cirurgia , Dor Pós-Operatória/epidemiologia , Dor de Ombro/epidemiologia , Atividades Cotidianas , Braço/fisiopatologia , California/epidemiologia , Feminino , Força da Mão/fisiologia , Humanos , Estudos Longitudinais , Mastectomia , Pessoa de Meia-Idade , Medição da Dor , Dor Pós-Operatória/fisiopatologia , Prevalência , Estudos Prospectivos , Qualidade de Vida , Amplitude de Movimento Articular/fisiologia , Fatores de Risco , Dor de Ombro/fisiopatologia , Inquéritos e Questionários
13.
J Pain ; 15(2): 169-80, 2014 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-24411993

RESUMO

UNLABELLED: Persistent pain following breast cancer surgery is a significant clinical problem. Although immune mechanisms may play a role in the development and maintenance of persistent pain, few studies have evaluated for associations between persistent breast pain following breast cancer surgery and variations in cytokine genes. In this study, associations between previously identified extreme persistent breast pain phenotypes (ie, no pain vs severe pain) and single nucleotide polymorphisms (SNPs) spanning 15 cytokine genes were evaluated. In unadjusted analyses, the frequency of 13 SNPs and 3 haplotypes in 7 genes differed significantly between the no pain and severe pain classes. After adjustment for preoperative breast pain and the severity of average postoperative pain, 1 SNP (ie, interleukin [IL] 1 receptor 2 rs11674595) and 1 haplotype (ie, IL10 haplotype A8) were associated with pain group membership. These findings suggest a role for cytokine gene polymorphisms in the development of persistent breast pain following breast cancer surgery. PERSPECTIVE: This study evaluated for associations between cytokine gene variations and the severity of persistent breast pain in women following breast cancer surgery. Variations in 2 cytokine genes were associated with severe breast pain. The results suggest that cytokines play a role in the development of persistent postsurgical pain.


Assuntos
Neoplasias da Mama/cirurgia , Mama/cirurgia , Citocinas/genética , Mastectomia , Dor Pós-Operatória/genética , Feminino , Técnicas de Genotipagem , Haplótipos , Humanos , Interleucina-10/genética , Desequilíbrio de Ligação , Modelos Logísticos , Estudos Longitudinais , Pessoa de Meia-Idade , Medição da Dor , Fenótipo , Polimorfismo de Nucleotídeo Único , Receptores Tipo II de Interleucina-1/genética , Índice de Gravidade de Doença , Inquéritos e Questionários
14.
Artigo em Inglês | MEDLINE | ID: mdl-25705576

RESUMO

BACKGROUND: Use of mobile health (mHealth) tools has expanded rapidly but little research has been done on its acceptability by low-income, diverse, older patient populations. OBJECTIVE: To assess the attitudes of a diverse group of underserved women on the acceptability and usability of mHealth tools in a clinical setting using a breast health questionnaire application (app) at a public hospital mammography clinic. METHODS: Semi-structured interviews were conducted in a breast-imaging center of an urban safety net institution from July-August 2012. Interviews included pre- and post-questions. Women completed the Athena breast health questionnaire app on an iPad and were asked about their experience and ways to improve the tool. RESULTS: Fifteen women age 45-79 years from diverse ethnic and educational backgrounds were interviewed. The majority of women, 11 of 15, preferred the Athena app over a paper version and all the women thought the app was easy to use. Two Spanish-speaking Latinas preferred paper; and two women, with limited mobile phone use, did not have a preference. Many women indicated that it would be necessary to have staff available for instruction and assistance if the app were to be implemented. CONCLUSIONS: mHealth tools are an acceptable, if not preferred, method of collecting health information for diverse, older, low-income women. Further studies are required to evaluate the reliability and accuracy of data collection using mHealth tools in underserved populations. mHealth tools should be explored as a novel way to engage diverse populations to improve clinical care and bridge gaps in health disparities.

15.
J Health Care Poor Underserved ; 24(3): 1150-66, 2013 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-23974388

RESUMO

Outcomes after genetic testing for hereditary breast and ovarian cancer (HBOC) syndrome have not been well studied in underserved populations. We surveyed 1,123 BRCA testers from a genetic counseling program serving an academic cancer center (n=1,045) and a public county hospital (n=78) a median of 3.7 years after testing for mutations in BRCA1 and BRCA2 (breast cancer susceptibility genes). We compared genetic counseling outcomes, cancer screening rates, and self-reported general health. We found no differences in genetic counseling outcomes between hospitals. Breast cancer screening rates were similarly high at both hospitals, which are warranted in this high-risk population. Screening rates for ovarian, colon, and skin cancer were significantly lower in participants from the public hospital. BRCA results were not a predictor of general health at either hospital. When creating a genetic counseling program that serves women in different hospital settings, providers should emphasize guidelines-based screening recommendations for all patients.


Assuntos
Neoplasias da Mama/genética , Neoplasias da Mama/prevenção & controle , Genes BRCA1 , Genes BRCA2 , Aconselhamento Genético , Nível de Saúde , Programas de Rastreamento , Adulto , Idoso , Idoso de 80 Anos ou mais , Neoplasias da Mama/etnologia , Institutos de Câncer , Feminino , Aconselhamento Genético/estatística & dados numéricos , Pesquisas sobre Atenção à Saúde , Humanos , Programas de Rastreamento/estatística & dados numéricos , Área Carente de Assistência Médica , Pessoa de Meia-Idade , Avaliação de Resultados em Cuidados de Saúde , Neoplasias Ovarianas/genética , Neoplasias Ovarianas/prevenção & controle , São Francisco , Adulto Jovem
16.
J Genet Couns ; 19(5): 447-62, 2010 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-20490636

RESUMO

The Cancer Risk Education Intervention Tool (CREdIT) is a computer-based (non-interactive) slide presentation designed to educate low-literacy, and ethnically and racially diverse public hospital patients at risk of Hereditary Breast and Ovarian Cancer (HBOC) about genetics. To qualitatively evaluate participants' experience with and perceptions of a genetic education program as an adjunct to genetic counseling, we conducted direct observations of the intervention, semi-structured in person interviews with 11 women who viewed CREdIT, and post-counseling questionnaires with the two participating genetic counselors. Five themes emerged from the analysis of interviews: (1) genetic counseling and testing for breast/ovarian cancer was a new concept; (2) CREdIT's story format was particularly appealing; (3) changes in participants' perceived risk for breast cancer varied; (4) some misunderstandings about individual risk and heredity persisted after CREdIT and counseling; (5) the context for viewing CREdIT shaped responses to the presentation. Observations demonstrated ways to make the information provided in CREdIT and by genetic counselors more consistent. In a post-session counselor questionnaire, counselors' rating of the patient's preparedness before the session was significantly higher for patients who viewed CREdIT prior to their appointments than for other patients. This novel educational tool fills a gap in HBOC education by tailoring information to women of lower literacy and diverse ethnic/racial backgrounds. The tool was well received by interview participants and counselors alike. Further study is needed to examine the varied effects of CREdIT on risk perception. In addition, the implementation of CREdIT in diverse clinical settings and the cultural adaptation of CREdIT to specific populations reflect important areas for future work.


Assuntos
Neoplasias da Mama/psicologia , Aconselhamento Genético , Predisposição Genética para Doença , Neoplasias Ovarianas/psicologia , Educação de Pacientes como Assunto/métodos , Adulto , Idoso , Neoplasias da Mama/genética , Feminino , Humanos , Pessoa de Meia-Idade , Neoplasias Ovarianas/genética , Fatores de Risco , Inquéritos e Questionários
17.
Cancer Epidemiol Biomarkers Prev ; 17(8): 1945-9, 2008 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-18708383

RESUMO

OBJECTIVE: To report on the effect of the Breast and Cervical Cancer Intervention Study (BACCIS), a multicomponent intervention conducted in the San Francisco Bay Area between 1992 and 1997. METHODS: BACCIS targeted approximately 25,000 multiethnic, underserved women in eight neighborhoods and the public health clinics that served them. An outreach intervention using lay health worker peers and clinic provider inreach intervention to improve breast and cervical cancer screening were evaluated in a quasi-experimental, controlled trial with pretest and posttest household surveys of 1,599 and 1,616 women, respectively. Surveys were conducted in English, Spanish, Mandarin, and Cantonese. RESULTS: Analyses of community survey results showed no significant improvement in reported screening behaviors. Reports of mammography in the intervention areas in the previous 2 years, or for Pap smear in the previous 3 years, did not differ significantly (73-71% and 84-87%, respectively, for pretest and posttest surveys). CONCLUSION: High baseline screening rates, lack of sensitive measures of change at the population level, contamination of the control group, and an imbalance of predictive factors at baseline contributed to the difficulty of assessing the value of the intervention. Lessons learned from this inconclusive study may be of value to future community intervention studies of cancer screening and other health behaviors in multiethnic underserved urban populations.


Assuntos
Neoplasias da Mama/prevenção & controle , Programas de Rastreamento , Área Carente de Assistência Médica , Neoplasias do Colo do Útero/prevenção & controle , Serviços de Saúde da Mulher/organização & administração , Adulto , Idoso , Distribuição de Qui-Quadrado , Feminino , Humanos , Modelos Logísticos , Pessoa de Meia-Idade , Aceitação pelo Paciente de Cuidados de Saúde , São Francisco
18.
J Cancer Surviv ; 2(3): 190-204, 2008 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-18670888

RESUMO

BACKGROUND: Today, the 5-year relative survival rate for cancer is 65% and there are 10.5 million survivors. The largest group of survivors are those of breast cancer. Reductions in mortality are occurring at a greater rate for women under age 50 at diagnosis than among older women. AIMS: Our goal was to design a socio-educational intervention for 5-year survivors aged 50 or younger at diagnosis and test the hypotheses that women in the intervention group would show greater improvement than controls with respect to (1) knowledge of breast cancer, its treatment, and long-term health concerns; (2) lifestyle habits (i.e., exercise and diet); and (3) communication with family and physicians. METHODS: Using a randomized controlled trial with a pre-post design, 404 women who were 5 years from diagnosis and cancer-free (response rate 54%) were randomly assigned to an intervention or delayed intervention (control) group and were assessed at pre-test (baseline) and 6 months later (96% retention). The intervention consisted of three 6-h workshops over a 3 month period. Four series of workshops were held at different geographical areas in the greater San Francisco Bay Area. The workshops included activities and information to promote physical, social, emotional, and spiritual well-being. The intervention design was based on findings from focus groups and a survey of 185 cancer-free 5-year survivors that assessed changes since the early months after diagnosis in physical, social, emotional, and spiritual concerns (response rate 73%). RESULTS: Consistent with our first hypothesis, at post-test, women in the intervention group, on average, had greater knowledge regarding breast cancer, its treatment, and their own future health than did those in the control group (p = 0.015). Hypothesis 2 was partially supported as women in the intervention group were more likely than the control group to report an increased amount of physical activity (p = 0.036), but not significant dietary changes. Social support was related to increased self report of physical activity. With the exception of the last series of workshops, the intervention group did not report improved communications with family, friends, and physicians (hypothesis 3). CONCLUSIONS: A short-term intervention can affect knowledge levels and physical activity but not diet or communication in the family. IMPLICATIONS FOR CANCER SURVIVORS: The intervention was related to greater knowledge related to breast cancer, and increased report of physical activity. The program was not related to changes in reported diet or family communication.


Assuntos
Protocolos Antineoplásicos , Neoplasias da Mama/terapia , Avaliação das Necessidades , Sobreviventes , Adulto , Fatores Etários , Neoplasias da Mama/mortalidade , Neoplasias da Mama/reabilitação , Barreiras de Comunicação , Dieta , Intervalo Livre de Doença , Feminino , Seguimentos , Humanos , Pessoa de Meia-Idade , Atividade Motora , Educação de Pacientes como Assunto , Relações Médico-Paciente , Fatores de Tempo , Adulto Jovem
19.
Genet Test ; 11(3): 276-90, 2007.
Artigo em Inglês | MEDLINE | ID: mdl-17949289

RESUMO

Genetic counseling for BRCA1 and BRCA2 mutations involves teaching about hereditary cancer, genetics and risk, subjects that are difficult to grasp and are routinely misunderstood. Supported by a grant from the Avon Foundation, the UCSF Cancer Risk Program started the first genetic testing and counseling service for a population of traditionally underserved women of varied ethnic and social backgrounds at the San Francisco General Hospital (SFGH). Informed by educational theory and clinical experience, we devised and piloted two simplified explanations of heredity and genetic risk, with the aim of uncovering how to best communicate genetics and risk to this underserved population. A "conventional" version comprised pictures of genes, pedigrees, and quantitative representations of risk. A "colloquial" pictorial version used an analogy of the "information book" of genes, family stories and vignettes, and visual representations of risk, without using scientific words such as genes or chromosomes. A verbal narrative accompanied each picture. We presented these modules to four focus groups of five to eight women recruited from the SFGH Family Practice Clinic. Overall, women preferred a picture-based approach and commented that additional text would have been distracting. The majority of women preferred the colloquial version because it was easier to understand and better conveyed a sense of comfort and hope. We conclude that simplicity, analogies, and familiarity support comprehension while vignettes, family stories, and photos of real people provide comfort and hope. These elements may promote understanding of complex scientific topics in healthcare, particularly when communicating with patients who come from disadvantaged backgrounds.


Assuntos
Neoplasias da Mama/diagnóstico , Aconselhamento Genético , Educação de Pacientes como Assunto , Neoplasias da Mama/etnologia , Neoplasias da Mama/genética , Feminino , Testes Genéticos , Pesquisas sobre Atenção à Saúde , Hospitais Públicos , Humanos , Área Carente de Assistência Médica , São Francisco
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