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2.
BMC Health Serv Res ; 24(1): 253, 2024 Feb 28.
Artigo em Inglês | MEDLINE | ID: mdl-38414045

RESUMO

BACKGROUND: Germline cancer genetic testing has become a standard evidence-based practice, with established risk reduction and screening guidelines for genetic carriers. Access to genetic services is limited in many places, which leaves many genetic carriers unidentified and at risk for late diagnosis of cancers and poor outcomes. This poses a problem for childhood cancer survivors, as this is a population with an increased risk for subsequent malignant neoplasms (SMN) due to cancer therapy or inherited cancer predisposition. The ENGaging and Activating cancer survivors in Genetic services (ENGAGE) study evaluates the effectiveness of an in-home, collaborative PCP model of remote telegenetic services to increase uptake of cancer genetic testing in childhood cancer survivors compared to usual care options for genetic testing. METHODS: The ENGAGE study is a 3-arm randomized hybrid type 1 effectiveness and implementation study within the Childhood Cancer Survivor Study population which tests a clinical intervention while gathering information on its delivery during the effectiveness trial and its potential for future implementation among 360 participants. Participants are randomized into three arms. Those randomized to Arm A receive genetic services via videoconferencing, those in Arm B receive these services by phone, and those randomized to Arm C will receive usual care services. DISCUSSION: With many barriers to accessing genetic services, innovative delivery models are needed to address this gap and increase uptake of genetic services. The ENGAGE study evaluates the effectiveness of an adapted model of remote delivery of genetic services to increase the uptake of recommended genetic testing in childhood cancer survivors. This study assesses the uptake in remote genetic services and identify barriers to uptake to inform future recommendations and a theoretically-informed process evaluation which can inform modifications to enhance dissemination beyond this study population and to realize the benefits of precision medicine. TRIAL REGISTRATION: This protocol was registered at clinicaltrials.gov (NCT04455698) on July 2, 2020.


Assuntos
Sobreviventes de Câncer , Neoplasias , Humanos , Criança , Neoplasias/genética , Testes Genéticos
3.
J Cancer Educ ; 38(5): 1420-1428, 2023 10.
Artigo em Inglês | MEDLINE | ID: mdl-37540339

RESUMO

Patient education is an important part of cancer care as it increases patient activation and informed decision-making, reduces anxiety, and improves outcomes. However, challenges to providing appropriate education to patients exist on both the health provider and patient side of the equation, e.g., time constraints and health literacy issues. Digital health education is a fast-growing field of interest that has been shown to improve health outcomes, increase effectiveness of medical treatments and education, lower medical costs, and enhance both clinical diagnosis and research opportunities by streamlining data collection, sharing, and analysis. In 2019, Fox Chase Cancer Center was selected by ARCHES, an established patient education software company, to pilot its award-winning digital patient engagement system MyCareCompass. During the pilot, patients scheduled for port insertions were sent electronic messages inviting them to review various online educational materials related to their procedure and subsequent concerns. The invitations and resources were seamlessly integrated into the scheduling system and timed to arrive when patients would most need them. There was high usage of the port-related materials and patients reported a high level of satisfaction with the delivery system and the information. This automated process of delivering high-quality and relevant patient education was able to be implemented smoothly with IT involvement, had a positive impact on patients without adding any extra burden to the care team, and highlighted opportunities to integrate these types of interventions into routine care.


Assuntos
Letramento em Saúde , Educação de Pacientes como Assunto , Humanos , Pacientes , Participação do Paciente
4.
Cancer ; 128 Suppl 13: 2568-2577, 2022 07 01.
Artigo em Inglês | MEDLINE | ID: mdl-35699612

RESUMO

BACKGROUND: Patient navigation improves cancer care delivery for those most at risk for poor outcomes. Lack of sustainable funding threatens the full integration of navigation services into health care delivery systems. Standardized navigation metrics that document impact and identify best practices are necessary to support sustainability. METHODS: The National Navigation Roundtable administered a web-based, cross-sectional survey to oncology patient navigation programs to identify barriers and facilitators to the use of navigation metrics. The 38-item survey asked about data-collection practices and specific navigation metrics used by the program. Exploratory and descriptive statistics were used to identify factors associated with data collection and reporting. RESULTS: Seven hundred fifty respondents from across the country represented navigation programs across the continuum of care. Although 538 respondents (72%) reported participating in routine data collection, only one-half of them used data for reporting purposes. For the 374 programs that used electronic health records, only 40% had discrete, reportable navigation fields, and 25% had an identifier for navigated patients. Program funding was identified as the only characteristic associated with data collection, whereas the type of data collected was associated with work setting, participation in alternative payment models, and where on the continuum navigation services are provided. Respondents participating in an oncology accreditation program were more likely to collect specific outcome metrics across the continuum and to use those data for reporting purposes. The most common barriers to data collection were time (55%) and lack of support for complex data systems and/or platforms (50%). CONCLUSIONS: Inconsistent data collection and reporting of oncology navigation programs remain a threat to sustainability. Aligning data collection with oncology accreditation, funding, and reimbursement is a viable path forward.


Assuntos
Neoplasias , Navegação de Pacientes , Estudos Transversais , Atenção à Saúde , Humanos , Oncologia , Neoplasias/terapia , Navegação de Pacientes/métodos
5.
Cancer ; 128 Suppl 13: 2561-2567, 2022 07 01.
Artigo em Inglês | MEDLINE | ID: mdl-35699616

RESUMO

BACKGROUND: The evidence continues to build in support of implementing patient navigation to reduce barriers and increase access to care. However, health disparities remain in cancer outcomes. The goal of the National Navigation Roundtable (NNRT) is to serve as a convener to help support the field of navigation to address equity. METHODS: To examine the progress and opportunities for navigation, the NNRT submitted a collection of articles based on the results from 2 dedicated surveys and contributions from member organizations. The intent was to help inform what we know about patient navigation since the last dedicated examination in this journal 10 years ago. RESULTS: The online survey of >700 people described navigators and examined sustainability and policy issues and the longevity, specific role and function, and impact of clinical and nonclinical navigators in addition to the role of training and supervision. In addition, a full examination of coronavirus disease 2019 and contributions from member organizations helped further define progress and future opportunities to meet the needs of patients through patient navigation. CONCLUSIONS: To achieve equity in cancer care will demand the sustained action of virtually every component of the cancer care system. It is the hope and intent of the NNRT that the information presented in this supplement will be a catalyst for action in this collective action approach.


Assuntos
COVID-19 , Neoplasias , Navegação de Pacientes , COVID-19/epidemiologia , Humanos , Neoplasias/terapia , Inquéritos e Questionários
6.
Cancer ; 128 Suppl 13: 2601-2609, 2022 07 01.
Artigo em Inglês | MEDLINE | ID: mdl-35699618

RESUMO

BACKGROUND: A nationwide survey was conducted to examine differences between clinical and nonclinical oncology navigators in their service provision, engagement in the cancer care continuum, personal characteristics, and program characteristics. METHODS: Using convenience sampling, 527 oncology navigators participated and completed an online survey. Descriptive statistics, χ2 statistics, and t tests were used to compare nonclinical (eg, community health worker) and clinical (eg, nurse navigators) navigators on the provision of various navigation services, personal characteristics, engagement in the cancer care continuum, and program characteristics. RESULTS: Most participants were clinical navigators (76.1%). Compared to nonclinical navigators, clinical navigators were more likely to have a bachelor's degree or higher (88.6% vs 69.6%, P < .001), be funded by operational budgets (84.4% vs 35.7%, P < .001), and less likely to work at a community-based organization or nonprofit (2.0% vs 36.5%, P < .001). Clinical navigators were more likely to perform basic navigation (P < .001), care coordination (P < .001), treatment support (P < .001), and clinical trial/peer support (P = .005). Clinical navigators were more likely to engage in treatment (P < .001), end-of-life (P < .001), and palliative care (P = .001) navigation. CONCLUSIONS: There is growing indication that clinical and nonclinical oncology navigators perform different functions and work in different settings. Nonclinical navigators may be more likely to face job insecurity because they work in nonprofit organizations and are primarily funded by grants.


Assuntos
Neoplasias , Navegação de Pacientes , Continuidade da Assistência ao Paciente , Humanos , Oncologia , Neoplasias/epidemiologia , Neoplasias/terapia , Inquéritos e Questionários , Estados Unidos/epidemiologia
7.
J Cancer Educ ; 37(2): 395-404, 2022 04.
Artigo em Inglês | MEDLINE | ID: mdl-32654038

RESUMO

Despite efforts to increase the diversity of cancer clinical trial participants, African Americans are still underrepresented. While perceptions of participation have been studied, the objective of this study was to compare perceptions and decisional conflict towards clinical trials among African American cancer patients who have and have not participated in clinical trials to identify key areas for intervention. Post hoc analysis also looked at whether they had been asked to participate and how that group differed from those who did. Forty-one African American cancer patients were surveyed at two urban cancer centers and asked to agree/disagree to statements related to clinical trials perceptions (facilitators, barriers, beliefs, values, support, and helpfulness), and complete the O'Connor Decisional Conflict Scale. Independent-samples t tests compared participants by clinical trials participation status; 41% had participated in a clinical trial. Results revealed significant perceptual differences among the groups in three main areas: helpfulness of clinical trials, facilitators to participate in clinical trials, and barriers to participating in clinical trials. Post hoc analysis indicated that those who were not asked about clinical trials and had not participated differed significantly in all areas compared with participants. Additionally, clinical trial participants reported significantly lower decisional conflict in most items compared with both those who had and had not be asked to participate. These differences can give practitioners clues as to how to bridge the gap from non-participator to participator. Messages could then be infused in the clinician-patient dyad when introducing and discussing clinical trials, potentially providing a more effective strategy for communicating with African American patients.


Assuntos
Negro ou Afro-Americano , Neoplasias , Humanos , Neoplasias/terapia , Inquéritos e Questionários
8.
J Gen Intern Med ; 36(1): 186-195, 2021 01.
Artigo em Inglês | MEDLINE | ID: mdl-32869193

RESUMO

Efforts to improve cancer care primarily come from two fields: improvement science and implementation science. The two fields have developed independently, yet they have potential for synergy. Leveraging that synergy to enhance alignment could both reduce duplication and, more importantly, enhance the potential of both fields to improve care. To better understand potential for alignment, we examined 20 highly cited cancer-related improvement science and implementation science studies published in the past 5 years, characterizing and comparing their objectives, methods, and approaches to practice change. We categorized studies as improvement science or implementation science based on authors' descriptions when possible; otherwise, we categorized studies as improvement science if they evaluated efforts to improve the quality, value, or safety of care, or implementation science if they evaluated efforts to promote the implementation of evidence-based interventions into practice. All implementation studies (10/10) and most improvement science studies (6/10) sought to improve uptake of evidence-based interventions. Improvement science and implementation science studies employed similar approaches to change practice. For example, training was employed in 8/10 implementation science studies and 4/10 improvement science studies. However, improvement science and implementation science studies used different terminology to describe similar concepts and emphasized different methodological aspects in reporting. Only 4/20 studies (2 from each category) described using a formal theory or conceptual framework to guide program development. Most studies were multi-site (10/10 implementation science and 6/10 improvement science) and a minority (2 from each category) used a randomized design. Based on our review, cancer-related improvement science and implementation science studies use different terminology and emphasize different methodological aspects in reporting but share similarities in purpose, scope, and methods, and are at similar levels of scientific development. The fields are well-positioned for alignment. We propose that next steps include harmonizing language and cross-fertilizing methods of program development and evaluation.


Assuntos
Ciência da Implementação , Neoplasias , Humanos , Neoplasias/terapia , Desenvolvimento de Programas
9.
Ann Behav Med ; 55(12): 1220-1230, 2021 11 18.
Artigo em Inglês | MEDLINE | ID: mdl-33674863

RESUMO

BACKGROUND: Despite the promise of mobile health (mHealth), engagement is often too low for durable health behavior change, and little is known regarding why certain individuals abandon mHealth tools. PURPOSE: Guided by a mHealth engagement framework, we evaluated contextual predictors of objective engagement with an app for adolescents and young adults (AYA) who survived cancer. METHODS: One hundred and ten AYA survivors (M age = 20.5, 43% female, 30% racial/ethnic minority) were randomized to receive a disease self-management app that delivered 1-2 tailored messages/day for 16 weeks, and contained a survivorship care plan (SCP). Demographic, disease, psychosocial, and setting characteristics were examined as predictors of three objective engagement outcomes: (a) % of active app days, (b) % of messages read, and (c) viewed SCP in the app versus not. A subsample (n = 10) completed qualitative interviews to further assess engagement barriers. RESULTS: Self-reported uninterrupted app access (ß = -0.56, p < .001), iPhone (vs. Android) ownership (ß = 0.30, p < .001), and receiving the intervention in the summer (ß = -0.20, p = .01) predicted more active days. Lower depressed mood (ß = -0.30, p = .047) and uninterrupted app access (ß = -0.50, p < .001) predicted more messages read. Qualitatively, technical glitches and competing priorities were described as engagement barriers, whereas certain types of messages (e.g., health goal messages) were perceived as engaging. Among participants who had uninterrupted app access (n = 76), higher baseline motivation to change, better health perceptions, using the app during the summer, and iPhone ownership predicted higher engagement. CONCLUSIONS: Findings demonstrate the importance of comprehensively assessing and planning for multi-level ecological determinants of mHealth engagement in future trials. CLINICALTRIALS.GOV IDENTIFIER: NCT03363711.


Assuntos
Sobreviventes de Câncer , Aplicativos Móveis , Neoplasias , Telemedicina , Adolescente , Adulto , Minorias Étnicas e Raciais , Etnicidade , Feminino , Humanos , Masculino , Grupos Minoritários , Neoplasias/terapia , Adulto Jovem
10.
Pediatr Blood Cancer ; 68(3): e28884, 2021 03.
Artigo em Inglês | MEDLINE | ID: mdl-33416214

RESUMO

BACKGROUND: Self-management interventions for adolescent and young adult (AYA) survivors of childhood cancer are needed. The present study reports on the acceptability and feasibility of delivering survivorship care plans (SCPs) and an accompanying app to AYA. PROCEDURE: AYA (n = 224) ages 15-29 who completed treatment for cancer were randomized and received a digital SCP only or an SCP plus a mobile app intended to enhance self-management. For 16 weeks, the app delivered one to two daily messages complementing information in their SCP and tailored based on age, treatment, and health goal. Data are presented on feasibility, self-reported acceptability (including satisfaction and perceived benefits) and its relationship to app engagement (for those in app group), and feedback from qualitative interviews conducted with 10 AYA. RESULTS: The SCP and app proved feasible as evidenced by high recruitment and retention, access to technology, time analysis, moderate app engagement, and minimal technical issues. However, 12% reported never reading the SCP and 8% never used the app. The app and SCP were acceptable to AYA, and SCP acceptability ratings did not differ between groups. For those with the app, acceptability was positively related to message engagement. AYA recommended enhanced individualization and design features of the SCP and app. CONCLUSIONS: Results support the use of tailored SCPs and mobile health interventions for most AYA, as well as the need for further refinement and research. Delivery of SCPs and digital interventions are acceptable and feasible to AYA survivors, and may help promote health-related knowledge and survivorship self-management.


Assuntos
Sobreviventes de Câncer/estatística & dados numéricos , Promoção da Saúde , Aplicativos Móveis/estatística & dados numéricos , Neoplasias/prevenção & controle , Planejamento de Assistência ao Paciente/normas , Sobrevivência , Adolescente , Adulto , Criança , Estudos de Viabilidade , Feminino , Seguimentos , Humanos , Masculino , Motivação , Prognóstico , Taxa de Sobrevida , Adulto Jovem
11.
Psychooncology ; 29(1): 114-122, 2020 01.
Artigo em Inglês | MEDLINE | ID: mdl-31654442

RESUMO

OBJECTIVE: Designing salient digital health interventions requires theoretically-based formative research and user-center design with stakeholder input throughout impacting content and technology design. mychoice is a theory-based, stakeholder-guided digital health tool to improve clinical trial informed decision making, particularly among African American patients. METHODS: mychoice was developed by (1) mixed-methods formative research, including in-depth interviews (n=16) and surveys (N=41) with African American cancer patients who had and had not participated in a clinical trial; (2) e-tool design process including perceptual mapping analysis to prioritize messages, multi-disciplinary team and stakeholder input; and (3) iterative production and user testing. RESULTS: Interview findings showed that clinical trial participants expressed more positive attributes about and an openness to consider clinical trials, even though they expressed common concerns such as "fear of being a guinea pig". Survey results indicated that clinical trial participants expressed they had been given information to make the decision (P = .001), while those who had not more frequently reported (P > .001) that no one had talked to them about trials. Perceptual mapping indicated that values such as "helping find a cure" or "value to society" had little resonance to those who had not participated, providing message strategy for prototype development. User testing of the tool resulted in modifications; the most significant was the adaptation to a multi-cultural version. CONCLUSIONS: With the promise of digital health interventions, theory-guided, user-centered and best practice development is critical and mychoice serves as an example of the application of these principles.


Assuntos
Negro ou Afro-Americano/psicologia , Ensaios Clínicos como Assunto/psicologia , Educação de Pacientes como Assunto/métodos , Participação do Paciente/psicologia , Autonomia Pessoal , Comunicação , Tomada de Decisões , Humanos , Neoplasias/terapia , Sujeitos da Pesquisa , Inquéritos e Questionários
12.
J Pediatr ; 201: 208-214, 2018 10.
Artigo em Inglês | MEDLINE | ID: mdl-30017337

RESUMO

OBJECTIVES: To examine characteristics associated with cell phone use while driving by parents and caregivers of children ages 4-10 years. STUDY DESIGN: National cross-sectional online survey with a convenience sample (March 2017-April 2017). INCLUSION CRITERIA: Parent/caregiver of a child age 4-10 years in their home, age ≥18 years, read and spoke English, and drove child ≥6 times in previous 3 months. Adjusted logistic regression analyses were modeled for outcome measures of previous 3-month self-report cell phone use while driving with the child. RESULTS: The analytic sample was n = 760. In the previous 3 months, 47% of parent/caregivers talked on a hand-held phone, 52.2% talked on a hands-free phone, 33.7% read texts, 26.7% sent texts, and 13.7% used social media while driving with their child in the vehicle. Compared with those who always used their typical child restraint system, participants who did not always use were more likely to talk on a hands-free phone (aOR 1.97, 95% CI 1.26-3.09), read a text (aOR 1.74, 95% CI 1.11-2.73), send a text (aOR 1.65, 95% CI 1.04-2.62), and use social media (aOR 2.92, 95% CI 1.73-4.94) while driving. Higher income, not wearing a seat belt (driver) on every trip, and driving under influence of alcohol also were associated with various types of cell phone use while driving. CONCLUSIONS: Inconsistent child restraint system use, lack of seat belt use, and driving under the influence of alcohol are associated with parent/caregiver cell phone use while driving. Screening and education related to parental driving behaviors should include addressing multiple risk behaviors.


Assuntos
Acidentes de Trânsito/estatística & dados numéricos , Condução de Veículo/psicologia , Cuidadores/psicologia , Uso do Telefone Celular/estatística & dados numéricos , Telefone Celular/estatística & dados numéricos , Pais/psicologia , Inquéritos e Questionários , Adolescente , Adulto , Criança , Sistemas de Proteção para Crianças/estatística & dados numéricos , Pré-Escolar , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Cintos de Segurança , Autorrelato , Estados Unidos , Adulto Jovem
13.
Telemed J E Health ; 24(3): 236-245, 2018 03.
Artigo em Inglês | MEDLINE | ID: mdl-28731848

RESUMO

OBJECTIVE: Pediatric dermatology appointment wait times often exceed several months. We evaluated the usability, acceptability, and clinical impact of a store-and-forward teledermatology mobile application (app) linking families with pediatric dermatologists. METHODS: Parents of children age 6 weeks to 17 years or individuals 18-21 years old were invited (by e-mail or referral) to participate in this single group, prospective study. Within the app, users photographed the skin condition, answered questions, and submitted their case for review. One pediatric dermatologist viewed cases, diagnosed conditions, and provided instructions and prescriptions. User surveys immediately following app use and 1 week later, supplemented by electronic logs, assessed usability, acceptability, and impact. RESULTS: One hundred ninety-seven parents and one adolescent submitted cases within 39 days of invitation. App users were more likely to be white than those in the population invited (67% vs. 34%, p < 0.001) and their children were slightly younger (mean 7.3 vs. 9.0 years, p < 0.001). A majority, 83% found the app easy to use, 97% felt that submitting a case took "the right amount of time," 87% were satisfied, and 93% would use the app again. Prescription receipt was associated with increased app satisfaction (p = 0.008). The median user received a response in 2.8 h (interquartile range 1.1-6.4). Had the app been unavailable, 44% reported that they would have waited for primary care, 32% for a dermatology appointment, and 7% would have gone to an urgent care clinic. CONCLUSIONS: A mobile health app allowing families to directly consult a pediatric dermatologist was usable, acceptable, and expedited care.


Assuntos
Dermatologia/métodos , Aplicativos Móveis , Satisfação do Paciente , Telemedicina/métodos , Adolescente , Fatores Etários , Criança , Pré-Escolar , Feminino , Acessibilidade aos Serviços de Saúde , Humanos , Lactente , Masculino , Estudos Prospectivos , Fatores Socioeconômicos , Interface Usuário-Computador , Listas de Espera , Adulto Jovem
15.
J Behav Med ; 40(1): 23-38, 2017 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-27509892

RESUMO

Health disparities persist despite ongoing efforts. Given the United States' rapidly changing demography and socio-cultural diversity, a paradigm shift in behavioral medicine is needed to advance research and interventions focused on health equity. This paper introduces the ConNECT Framework as a model to link the sciences of behavioral medicine and health equity with the goal of achieving equitable health and outcomes in the twenty-first century. We first evaluate the state of health equity efforts in behavioral medicine science and identify key opportunities to advance the field. We then discuss and present actionable recommendations related to ConNECT's five broad and synergistic principles: (1) Integrating Context; (2) Fostering a Norm of Inclusion; (3) Ensuring Equitable Diffusion of Innovations; (4) Harnessing Communication Technology; and (5) Prioritizing Specialized Training. The framework holds significant promise for furthering health equity and ushering in a new and refreshing era of behavioral medicine science and practice.


Assuntos
Medicina do Comportamento/tendências , Equidade em Saúde/tendências , Humanos , Ciências Sociais/organização & administração , Estados Unidos
16.
J Med Internet Res ; 18(2): e23, 2016 Feb 01.
Artigo em Inglês | MEDLINE | ID: mdl-26831751

RESUMO

BACKGROUND: Videoconferencing has been used to expand medical services to low-access populations and could increase access to genetic services at community sites where in-person visits with genetic providers are not available. OBJECTIVE: To evaluate the feasibility of, patient feedback of, and cognitive and affective responses to remote two-way videoconferencing (RVC) telegenetic services at multiple sociodemographically diverse community practices without access to genetic providers. METHODS: Patients at 3 community sites in 2 US states outside the host center completed RVC pretest (visit 1, V1) and post-test (visit 2, V2) genetic counseling for cancer susceptibility. Surveys evaluated patient experiences, knowledge, satisfaction with telegenetic and cancer genetics services, anxiety, depression, and cancer worry. RESULTS: A total of 82 out of 100 (82.0%) approached patients consented to RVC services. A total of 61 out of 82 patients (74%) completed pretest counseling and 41 out of 61 (67%) proceeded with testing and post-test counseling. A total of 4 out of 41 (10%) mutation carriers were identified: BRCA2, MSH2, and PMS2. Patients reported many advantages (eg, lower travel burden and convenience) and few disadvantages to RVC telegenetic services. Most patients reported feeling comfortable with the video camera--post-V1: 52/57 (91%); post-V2: 39/41 (95%)--and that their privacy was respected--post-V1: 56/57 (98%); post-V2: 40/41 (98%); however, some reported concerns that RVC might increase the risk of a confidentiality breach of their health information--post-V1: 14/57 (25%); post-V2: 12/41 (29%). While the majority of patients reported having no trouble seeing or hearing the genetic counselor--post-V1: 47/57 (82%); post-V2: 39/41 (95%)--51 out of 98 (52%) patients reported technical difficulties. Nonetheless, all patients reported being satisfied with genetic services. Compared to baseline, knowledge increased significantly after pretest counseling (+1.11 mean score, P=.005); satisfaction with telegenetic (+1.74 mean score, P=.02) and genetic services (+2.22 mean score, P=.001) increased after post-test counseling. General anxiety and depression decreased after pretest (-0.97 mean anxiety score, P=.003; -0.37 mean depression score, P=.046) and post-test counseling (-1.13 mean anxiety score, P=.003; -0.75 mean depression score, P=.01); state anxiety and cancer-specific worry did not significantly increase. CONCLUSIONS: Remote videoconferencing telegenetic services are feasible, identify genetic carriers in community practices, and are associated with high patient satisfaction and favorable cognitive and affective outcomes, suggesting an innovative delivery model for further study to improve access to genetic providers and services. Potential barriers to dissemination include technology costs, unclear billing and reimbursement, and state requirements for provider licensure.


Assuntos
Serviços de Saúde Comunitária/métodos , Atenção à Saúde/métodos , Aconselhamento Genético/métodos , Neoplasias/genética , Telemedicina/métodos , Comunicação por Videoconferência/normas , Estudos de Viabilidade , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Satisfação do Paciente
17.
J Cancer Educ ; 31(1): 191-7, 2016 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-25971432

RESUMO

Prostate cancer disproportionately affects Black men, who may also encounter barriers to participation in prostate cancer risk assessment. The Prostate Risk, Education and Assessment in the Community with Help (REACH) project was a community-based extension of a comprehensive prostate cancer risk assessment program at a comprehensive cancer center. The goals of the REACH project were the following: (1) establish a community prostate cancer risk assessment clinic, (2) conduct targeted recruitment, and (3) provide navigation services including follow-up for uninsured men. Key implementation steps included the following: (1) choosing a clinic site, (2) establishing patient access procedures, (3) establishing navigator services, (4) developing subsidy fund use guidelines, and (5) designing recruitment and promotion. Through community-based promotion, 64 men inquired about the program and 26 (41 %) participated. Of those screened, 46 % had abnormal results, and 2 men were diagnosed with prostate cancer. Here, we describe a unique demonstration project to implement a comprehensive prostate cancer risk assessment program in an underserved Black community and describe successes and challenges to inform future efforts to promote access to underserved men.


Assuntos
Detecção Precoce de Câncer/psicologia , Etnicidade/educação , Educação de Pacientes como Assunto , Neoplasias da Próstata/prevenção & controle , Populações Vulneráveis/psicologia , Adulto , Idoso , Seguimentos , Humanos , Aprendizagem , Masculino , Pessoa de Meia-Idade , Navegação de Pacientes , Seleção de Pacientes , Prognóstico , Avaliação de Programas e Projetos de Saúde , Neoplasias da Próstata/diagnóstico , Neoplasias da Próstata/psicologia , Medição de Risco
18.
Eur J Cancer Care (Engl) ; 24(1): 28-38, 2015.
Artigo em Inglês | MEDLINE | ID: mdl-24467411

RESUMO

Patient participation in cancer clinical trials is low. Little is known about attitudinal barriers to participation, particularly among patients who may be offered a trial during an imminent initial oncology consult. The aims of the present study were to confirm the presence of proposed subscales of a recently developed cancer clinical trial attitudinal barriers measure, describe the most common cancer clinical trials attitudinal barriers, and evaluate socio-demographic, medical and financial factors associated with attitudinal barriers. A total of 1256 patients completed a survey assessing demographic factors, perceived financial burden, prior trial participation and attitudinal barriers to clinical trials participation. Results of a factor analysis did not confirm the presence of the proposed four attitudinal barriers subscale/factors. Rather, a single factor represented the best fit to the data. The most highly-rated barriers were fear of side-effects, worry about health insurance and efficacy concerns. Results suggested that less educated patients, patients with non-metastatic disease, patients with no previous oncology clinical trial participation, and patients reporting greater perceived financial burden from cancer care were associated with higher barriers. These patients may need extra attention in terms of decisional support. Overall, patients with fewer personal resources (education, financial issues) report more attitudinal barriers and should be targeted for additional decisional support.


Assuntos
Tomada de Decisões , Conhecimentos, Atitudes e Prática em Saúde , Neoplasias/psicologia , Participação do Paciente/psicologia , Idoso , Ensaios Clínicos como Assunto , Estudos Transversais , Análise Fatorial , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/terapia , Participação do Paciente/economia , Participação do Paciente/estatística & dados numéricos , Encaminhamento e Consulta , Inquéritos e Questionários
19.
Future Oncol ; 10(4): 519-22, 2014 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-24754582

RESUMO

During a panel presentation at the American Association for Cancer Research Cancer Health Disparities Conference titled 'Opportunities and challenges of using technology to address health disparities', the latest scientific advances in the application and utilization of mobile technology and/or mobile-health (mHealth) interventions to address cancer health disparities were discussed. The session included: an examination of overall population trends in the uptake of technology and the potential of addressing health disparities through such media; an exploration of the conceptual issues and challenges in the construction of mHealth interventions to address disparate and underserved populations; and a presentation of pilot study findings on the acceptability and feasibility of using mHealth interventions to address prostate cancer disparities among African-American men.


Assuntos
Disparidades em Assistência à Saúde , Tecnologia , Feminino , Acessibilidade aos Serviços de Saúde , Humanos , Masculino , Tecnologia sem Fio
20.
J Cancer Educ ; 29(2): 366-74, 2014 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-24519744

RESUMO

The participation of racial and ethnic minorities and underserved populations in clinical trials is a critical link between scientific innovation and improvements in health care delivery and health outcomes. However, these population groups continue to be underrepresented in research. We describe the development of the Cancer Disparities Research Network (CDRN) to improve minority and underserved populations' participation in biobanking research. Between February and October 2011, we conducted a regional assessment to identify challenges and opportunities for cancer trials and biobanking research across the CDRN. Representatives from ten CDRN biorepository facilities completed an online survey assessing their facilities' minority biospecimen collection, biobanking practices, and education/outreach initiatives. Representatives of eight facilities also participated in stakeholder interviews. The majority (70%) of facilities reported that specimens were available for research, although only one tenth of these specimens were from non-White patients. Most facilities collected a patient's age, gender, race, medical history, and ethnicity with samples; however, less than half also collected family health history, education level, household income, or primary language spoken. In addition, few institutions collected Asian or Hispanic subgroup information. Only a few reported biospecimen collection outreach programs specifically targeting minority and underserved populations. Biospecimen directors and administrators indicated that funding, biospecimen sharing procedures, and standardization barriers limited their facilities from collaborating in biospecimen collection programs, despite their great interest. These findings suggest that the CDRN can provide opportunities for collaboration, resource sharing, and fostering of research ideas to address cancer disparities in biospecimen research.


Assuntos
Etnicidade/estatística & dados numéricos , Acessibilidade aos Serviços de Saúde/normas , Disparidades em Assistência à Saúde/organização & administração , Disparidades em Assistência à Saúde/normas , Neoplasias/prevenção & controle , Bancos de Espécimes Biológicos , Acessibilidade aos Serviços de Saúde/organização & administração , Humanos , Avaliação das Necessidades , Neoplasias/diagnóstico , Neoplasias/etnologia
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