Joanne Buzaglo

Cancer Support Community, Washington, Washington, D.C., United States

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Publications (34)62.93 Total impact

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    ABSTRACT: The majority of cancer patients are treated in community cancer centers or private oncology practices, not at comprehensive and academic cancer centers; yet, little is known about the differences in patient experience across these practice settings with respect to patient engagement around treatment decision-making. To explore these differences and understand where there may be gaps in patient-centered care, we surveyed cancer patients and survivors who registered in the Cancer Experience Registry, an online initiative designed to track their psychosocial needs. In 2013, 788 registrants answered questions about their experience in getting support around treatment decision-making. The sample was 86.4% female and 90.9% Caucasian with median age 57; 70.0% had a college degree. 41.4% received treatment at an academic or comprehensive cancer center (A/CCC); 32.1% at a community hospital or cancer center; 26.5% at a private oncology practice. Respondents who received treatment at an A/CCC reported being more knowledgeable about treatment options (p=0.001) and more involved in the treatment decision making process (p<0.001). They also received more treatment decision support (p=0.024), were more likely to speak to their healthcare team about clinical trials (p<0.001) and were more satisfied with how much they participated in making the treatment decision (p=0.014). Findings suggest that cancer survivors who receive treatment at an A/CCC feel more involved, knowledgeable, and satisfied with the treatment decision making process than those who receive care elsewhere. Future efforts should target the development of innovative, patient-centered decision support programs that link patients to resources treated in community practice settings.
    142nd APHA Annual Meeting and Exposition 2014; 11/2014
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    ABSTRACT: The objective was to test the discriminatory power of a 25-item distress screening tool for use among cancer survivors. We used a measure of item discrimination to determine which items perform better than others at identifying those at greatest risk of distress.
    Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation. 06/2014;
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    ABSTRACT: Objective: A model of psychosocial care specific for patients with multiple myeloma and their caregivers has not yet been proposed. We sought to develop a model of care that considers the specific profile of this disease. Method: The authors, representing a multidisciplinary care team, met in December of 2012 to identify a model of psychosocial care for patients with multiple myeloma and their caregivers. This model was determined by consensus during the meeting and via total agreement following the meeting. The meeting was sponsored by Onyx Pharmaceuticals. Results: The need for targeted psychosocial care for the multiple myeloma patient and caregiver throughout the disease process is essential to ensure quality of life and optimal treatment outcomes. We propose herein the first known model of care for the treatment of multiple myeloma that engages both the patient and their caregivers. Significance of results: Innovative partnerships between psychosocial providers and other entities such as pharmaceutical companies can maximize resources for comprehensive program development. This manuscript proposes a model of care that promotes active engagement in therapies for multiple myeloma while engaging the individual patient and their family caregivers. This treatment approach must be evidence based in terms of distress screening tools, comprehensive psychosocial assessments, and, most importantly, in the interventions and measurements of response that clinicians apply to this population.
    Palliative & supportive care. 06/2014;
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    ABSTRACT: Low-income, inner-city women bear a disproportionate burden of cervical cancer in both incidence and mortality rates in the United States, largely because of low adherence to follow-up recommendations after an abnormal cervical cytology result in the primary care setting. The goals of the present study were to delineate the theory-based psychosocial barriers underlying these persistent low follow-up rates and their sociodemographic correlates. Guided by a well-validated psychosocial theory of health behaviors, this cross-sectional, correlational study assessed the barriers to follow-up adherence among underserved women (N = 210) who received an abnormal cervical cytology result. Participants were recruited through an inner-city hospital colposcopy clinic, and were assessed by telephone prior to the colposcopy appointment. Participants were largely of African American race (82.2%), lower than high school completion education (58.7%), single, never married (67.3%), and without full-time employment (64.1%). Knowledge barriers were most often endorsed (68%, M = 3.22), followed by distress barriers (64%, M = 3.09), and coping barriers (36%, M = 2.36). Forty-six percent reported more than one barrier category. Less education and being unemployed were correlated with higher knowledge barriers (P < .0001 and P < .01, respectively) and more coping barriers (P < .05 and P < .05, respectively). Women who were younger than 30 years displayed greater distress barriers (P < .05). In the primary care setting, assessing and addressing knowledge and distress barriers after feedback of an abnormal cervical cytology result may improve adherence to follow-up recommendations. The use of structured counseling protocols and referral to navigational and other resources may facilitate this process and thereby reduce disparities in cervical cancer.
    Journal of primary care & community health. 04/2014;
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    ABSTRACT: 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.
    European Journal of Cancer Care 01/2014; · 1.31 Impact Factor
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    ABSTRACT: As non-small-cell lung cancer (NSCLC) treatments improve and patients live longer, it is important to develop interventions to help patients live fuller lives. We sought to identify key components of quality of life (QOL) in determining therapeutic decision making and overall value of life extension in patients with NSCLC.
    The Journal of community and supportive oncology. 01/2014; 12(1):6-12.
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    ABSTRACT: Objective This article describes the rigorous development process and initial feedback of the PRE-ACT (Preparatory Education About Clinical Trials) web-based- intervention designed to improve preparation for decision making in cancer clinical trials. Methods The multi-step process included stakeholder input, formative research, user testing and feedback. Diverse teams (researchers, advocates and developers) participated including content refinement, identification of actors, and development of video scripts. Patient feedback was provided in the final production period and through a vanguard group (N = 100) from the randomized trial. Results Patients/advocates confirmed barriers to cancer clinical trial participation, including lack of awareness and knowledge, fear of side effects, logistical concerns, and mistrust. Patients indicated they liked the tool's user-friendly nature, the organized and comprehensive presentation of the subject matter, and the clarity of the videos. Conclusion The development process serves as an example of operationalizing best practice approaches and highlights the value of a multi-disciplinary team to develop a theory-based, sophisticated tool that patients found useful in their decision making process. Practice Implications. Best practice approaches can be addressed and are important to ensure evidence-based tools that are of value to patients and supports the usefulness of a process map in the development of e-health tools.
    Patient Education and Counseling 01/2014; · 2.60 Impact Factor
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    ABSTRACT: This study used the Ottawa Decision Support Framework to evaluate a model examining associations between clinical trial knowledge, attitudinal barriers to participating in clinical trials, clinical trial self-efficacy, and clinical trial preparedness among 1256 cancer patients seen for their first outpatient consultation at a cancer center. As an exploratory aim, moderator effects for gender, race/ethnicity, education, and metastatic status on associations in the model were evaluated. . Patients completed measures of cancer clinical trial knowledge, attitudinal barriers, self-efficacy, and preparedness. Structural equation modeling (SEM) was conducted to evaluate whether self-efficacy mediated the association between knowledge and barriers with preparedness. . The SEM explained 26% of the variance in cancer clinical trial preparedness. Self-efficacy mediated the associations between attitudinal barriers and preparedness, but self-efficacy did not mediate the knowledge-preparedness relationship. . Findings partially support the Ottawa Decision Support Framework and suggest that assessing patients' level of self-efficacy may be just as important as evaluating their knowledge and attitudes about cancer clinical trials.
    Medical Decision Making 11/2013; · 2.89 Impact Factor
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    ABSTRACT: The present study explored the impact of a tailored telephone counseling intervention on increasing follow-up adherence after an abnormal Pap smear result among low-income, minority women, which may reduce cervical cancer disparity. Participants (N=211) were randomly assigned to receive: (1) a telephone reminder that included an assessment of barriers to adherence, as well as counseling tailored to the barriers elicited; (2) telephone reminder and barriers assessment, followed by a mailed home tailored barriers print brochure; or (3) enhanced standard care comprising telephone reminder and barriers assessment. Assessments were obtained at initial contact and 1-week later, as well as at 6- and 12-months after the initial colposcopy. The telephone counseling group showed greater adherence to follow-up recommendations than did the combined other two groups (p<0.05). For the initial colposcopy, tailored telephone barriers counseling was more effective among women with a high school education or less. Tailored telephone barriers counseling improves adherence to initial colposcopy, as well as to longer-term medical follow-up, among low-income, inner-city women. Dissemination of barriers counseling into ongoing telephone reminder calls and contacts may decrease disparities in cancer outcomes, especially among women with less than post-secondary education.
    Patient Education and Counseling 08/2013; · 2.60 Impact Factor
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    ABSTRACT: The Cancer Support Community (CSC) provides psychosocial support to people facing cancer in community settings. The purpose of this study was to evaluate the compatibility, effectiveness, and fidelity of the Situation-Choices-Objectives-People-Evaluation-Decisions (SCOPED) question-listing intervention at three CSC sites. Between August 2008 and August 2011, the Program Director at each CSC site implemented question-listing, while measuring patient distress, anxiety, and self-efficacy before and after each intervention. We analyzed the quantitative results using unadjusted statistical tests and reviewed qualitative comments by patients and the case notes of Program Directors to assess compatibility and fidelity. Program Directors implemented question-listing with 77 blood cancer patients. Patients reported decreased distress (p = 0.009) and anxiety (p = 0.005) and increased self-efficacy (p < 0.001). Patients and Program Directors endorsed the intervention as compatible with CSC's mission and approach and feasible to implement with high fidelity. CSC effectively translated SCOPED question-listing into practice in the context of its community-based psychosocial support services at three sites.
    Translational behavioral medicine. 06/2013; 3(2):162-71.
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    ABSTRACT: BACKGROUND: Cancer patients and their oncologists often report differing perceptions of consultation discussions and discordant expectations regarding treatment outcomes. CONNECT, a computer-based communication aid, was developed to improve communication between patients and oncologists. METHODS: CONNECT includes assessment of patient values, goals, and communication preferences; patient communication skills training; and a preconsultation physician summary report. CONNECT was tested in a 3-arm, prospective, randomized clinical trial. Prior to the initial medical oncology consultation, adult patients with advanced cancer were randomized to the following arms: 1) control; 2) CONNECT with physician summary; or 3) CONNECT without physician summary. Outcomes were assessed with postconsultation surveys. RESULTS: Of 743 patients randomized, 629 completed postconsultation surveys. Patients in the intervention arms (versus control) felt that the CONNECT program made treatment decisions easier to reach (P = .003) and helped them to be more satisfied with these decisions (P < .001). In addition, patients in the intervention arms reported higher levels of satisfaction with physician communication format (P = .026) and discussion regarding support services (P = .029) and quality of life concerns (P = .042). The physician summary did not impact outcomes. Patients with higher levels of education and poorer physical functioning experienced greater benefit from CONNECT. CONCLUSIONS: This prospective randomized clinical trial demonstrates that computer-based communication skills training can positively affect patient satisfaction with communication and decision-making. Measurable patient characteristics may be used to identify subgroups most likely to benefit from an intervention such as CONNECT. Cancer 2013. © 2013 American Cancer Society.
    Cancer 01/2013; · 5.20 Impact Factor
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    ABSTRACT: INTRODUCTION: The NCI developed the print-based educational brochure, Facing Forward, to fill a gap in helping cancer patients meet the challenges of transitioning from active treatment to survivorship; however, little research has been conducted on its efficacy. PURPOSE: The aims of this study were to evaluate the efficacy of Facing Forward in promoting the uptake of recommended behaviors (e.g., ways to manage physical changes) and to explore its usability. METHODS: At the last treatment appointment, early-stage breast, prostate, colorectal, and thoracic cancer patients (N = 340) recruited from community clinical oncology practices and an academic medical center completed a baseline assessment and were randomized to receive either Facing Forward (n = 175) or an attention control booklet about the NCI's Cancer Information Service (n = 165). Patients completed follow-up assessments at 8 weeks and 6 months post-baseline. RESULTS: The reported uptake of recommended stress management behaviors was greater among intervention than control participants at both 8 weeks post-baseline (p = 0.016) and 6 months post-baseline (p = 0.017). At 8 weeks post-baseline, the intervention control group difference was greater among African-American than Caucasian participants (p < 0.03) and significant only among the former (p < 0.003); attendance at a cancer support group was also greater among the intervention than control group participants (p < 0.02). There were no significant intervention control group differences in the reported uptake of recommended behaviors in three other categories (p > 0.025). Intervention participants rated Facing Forward as understandable and helpful and indicated a high level of intention to try the behaviors recommended. CONCLUSIONS: Facing Forward can enhance early-stage survivors' reported ability to manage stress and increase support group use during the reentry period. IMPLICATIONS FOR CANCER SURVIVORS: Facing Forward can help survivors meet the challenges of the reentry period.
    Journal of Cancer Survivorship 12/2012; · 3.57 Impact Factor
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    ABSTRACT: Psychological distress has been recognized as having a significant effect upon cognitive and emotional functioning, quality of life, and in some populations increased costs of care. Screening for distress and provision of psychosocial care in oncology treatment settings has been identified as a future accreditation standard by the American College of Surgeons Commission on Cancer (CoC). Because there are few available models of programs of distress screening and referral to inform oncology social workers and other members of the psychosocial support team with planning their own programs, this article seeks to provide exemplars of best practices that are currently in place in four different settings where psychosocial support is provided to people living with cancer and their families. Each program will provide an overview of how it was successfully established and its contribution toward evolving evidence-informed best practices.
    Journal of Psychosocial Oncology 11/2012; 30(6):694-714. · 1.04 Impact Factor
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    ABSTRACT: In partnership, Cancer Support Community and LIVESTRONG developed Cancer Transitions: Moving Beyond TreatmentTM to meet the needs of post treatment cancer survivors. This six week community based intervention aims to modify health behaviors through the integration of health education, emotional support, exercise and nutrition to improve health outcomes of cancer survivors. The 2007 evaluation included 134 survivors up to one year post active treatment; 87% female; 75% white; mean age 55. Data was collected using the SF-12 to show change over time in the mental health component summary (MCS) and physical component summary (PCS) at baseline, 6, 18 and 30 weeks. At baseline, 17% reported their health as fair with over half overweight or obese. 50% had one or more comorbid condition including diabetes; HBP; heart disease; and psychological problems. Results indicated that when compared to baseline, MCS was significantly greater at 6 weeks (p=0.042), 18 weeks (p=0.001), 30 weeks (p=0.005), and PCS was significantly greater at 18 weeks (p=0.044) and 30 weeks (p=0.011). Levels of physical activity increased (p=0.002) peaking at 18 weeks. This corresponded to a mean increase from baseline levels of 614 minutes of total activity per week. The proportion of participants reporting low level of physical activity decreased from 27% at baseline to 18% at 6 weeks, 10% at 18 weeks and 18% at 30 weeks. Fat- and fiber-related dietary habits improved when compared to baseline levels. The dietary score was significantly lower indicating better dietary habits at 6, 18 and 30 weeks (p<0.00).
    140st APHA Annual Meeting and Exposition 2012; 10/2012
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    ABSTRACT: OBJECTIVE: The purpose was to test the psychometric properties of a 36-item community-based problem-related distress screening tool, among 319 cancer survivors recruited across 14 affiliates of the Cancer Support Community. METHODS: Internal reliability was estimated using Cronbach's alpha coefficient. Test-retest reliability was assessed using the intra-class correlation coefficient (ICC). Concurrent validity was determined by correlations with the Functional Assessment of Cancer Therapy-General Well-Being Scale (FACT-G), the Center for Epidemiologic Studies Depression Scale (CES-D), and the Distress Thermometer (DT) and receiver operating characteristic (ROC) curve analysis using the CES-D (≥16) and DT (≥4) as the criterion. Non-parametric analysis of variance was used to establish discriminant validity. RESULTS: The distress screener demonstrated high internal consistency (Cronbach's alpha = 0.91) and strong test-retest reliability (ICC ≥ 0.75). Summary scores of the distress screener correlated substantially with the FACT-G (R(2)  = 0.58, p < 0.001), CES-D (R(2)  = 0.48, p < 0.001), and DT (R(2)  = 0.35, p < 0.001) indicating strong concurrent validity and were able to discriminate groups of clinical relevance. ROC analyses showed a cutoff score of 8 for problem items rated ≥3 had optimal sensitivity and specificity relative to the CES-D and DT. CONCLUSIONS: The distress screener shows strong psychometric properties and can be considered a valuable community-based instrument to screen for psychological distress related to social, emotional, physical, and other patient-related symptoms and problems. This study is the first to address the chasm between hospital and community-based screening by validating a community-based instrument and has begun to demonstrate the feasibility of screening in the community. Copyright © 2012 John Wiley & Sons, Ltd.
    Psycho-Oncology 06/2012; · 3.51 Impact Factor
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    ABSTRACT: BACKGROUND: Cancer clinical trials (CCTs) are important tools in the development of improved cancer therapies; yet, participation is low. Key psychosocial barriers exist that appear to impact a patient's decision to participate. Little is known about the relationship among knowledge, self-efficacy, preparation, decisional conflict, and patient decisions to take part in CCTs. OBJECTIVE: The purpose of this study was to determine if preparation for consideration of a CCT as a treatment option mediates the relationship between knowledge, self-efficacy, and decisional conflict. We also explored whether lower levels of decisional conflict are associated with greater likelihood of CCT enrollment. METHOD: In a pre-post test intervention study, cancer patients (N = 105) were recruited before their initial consultation with a medical oncologist. A brief educational intervention was provided for all patients. Patient self-report survey responses assessed knowledge, self-efficacy, preparation for clinical trial participation, decisional conflict, and clinical trial participation. RESULTS: Preparation was found to mediate the relationship between self-efficacy and decisional conflict (p = 0.003 for a test of the indirect mediational pathway for the decisional conflict total score). Preparation had a more limited role in mediating the effect of knowledge on decisional conflict. Further, preliminary evidence indicated that reduced decisional conflict was associated with increased clinical trial enrollment (p = 0.049). CONCLUSIONS: When patients feel greater CCT self-efficacy and have more knowledge, they feel more prepared to make a CCT decision. Reduced decisional conflict, in turn, is associated with the decision to enroll in a clinical trial. Our results suggest that preparation for decision-making should be a target of future interventions to improve participation in CCTs. Copyright © 2012 John Wiley & Sons, Ltd.
    Psycho-Oncology 02/2012; · 3.51 Impact Factor
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    ABSTRACT: Background: The Open to Options pilot project provides one-on-one decision support to hematological cancer patients in 3 sites nationwide. Methods: Facilitators provide support using an evidence-based decision-making model SCOPED (Situation-Choices-Objectives-People-Evaluation-Decisions) to prompt patients to list questions about diagnosis and treatment, including the option of a cancer clinical trial (CCT). Patients complete pre- and post-session surveys, and at 30 and 90 days. Distress, anxiety and question self-efficacy are measured using a 10-point scale. For a subset, outcomes include use of the question list during their oncology visit. Results: Three facilitators have used the SCOPED question-listing process with 69 patients (14% ethnic minority). Among patients, there was a decrease in distress (p=0.065) and anxiety (p=0.008) and increase in question self-efficacy (p<0.001). Nearly half (51%) reported discussing CCTs with their oncologist. Currently, 44 have made a treatment decision, and 4 (9%) of these chose treatment through a CCT. At 30 days, 28 of 35 patients (80%) reported bringing their question list to their oncology appointment. Among those who brought their question list (n=28), 93% referred to it, 33% showed it to their oncologist, 86% thought the question list contributed to a more productive appointment, and 86% reported their oncologist answered most of their questions. Participants reported the question list: gave structure to the meeting like an agenda; clarified my thoughts; and was empowering. Conclusion: Early findings suggest use of SCOPED question-listing for blood cancer patients may improve coping and decision-making skills and may lead to enhanced patient dialogue and access to clinical trials.
    139st APHA Annual Meeting and Exposition 2011; 10/2011
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    ABSTRACT: The Internet can increase access to psychosocial care for breast cancer survivors through online support groups. This study will test a novel prosocial online group that emphasizes both opportunities for getting and giving help. Based on the helper therapy principle, it is hypothesized that the addition of structured helping opportunities and coaching on how to help others online will increase the psychological benefits of a standard online group. A two-armed randomized controlled trial with pretest and posttest. Non-metastatic breast cancer survivors with elevated psychological distress will be randomized to either a standard facilitated online group or to a prosocial facilitated online group, which combines online exchanges of support with structured helping opportunities (blogging, breast cancer outreach) and coaching on how best to give support to others. Validated and reliable measures will be administered to women approximately one month before and after the interventions. Self-esteem, positive affect, and sense of belonging will be tested as potential mediators of the primary outcomes of depressive/anxious symptoms and sense of purpose in life. This study will test an innovative approach to maximizing the psychological benefits of cancer online support groups. The theory-based prosocial online support group intervention model is sustainable, because it can be implemented by private non-profit or other organizations, such as cancer centers, which mostly offer face-to-face support groups with limited patient reach. ClinicalTrials.gov: NCT01396174.
    BMC Cancer 08/2011; 11:379. · 3.33 Impact Factor
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    ABSTRACT: Based on the cognitive-social health information processing model, we identified cognitive profiles of women at risk for breast and ovarian cancer. Prior to genetic counselling, participants (N = 171) completed a study questionnaire concerning their cognitive and affective responses to being at genetic risk. Using cluster analysis, four cognitive profiles were generated: (a) high perceived risk/low coping; (b) low value of screening/high expectancy of cancer; (c) moderate perceived risk/moderate efficacy of prevention/low informativeness of test result; and (d) high efficacy of prevention/high coping. The majority of women in Clusters One, Two and Three had no personal history of cancer, whereas Cluster Four consisted almost entirely of women affected with cancer. Women in Cluster One had the highest number of affected relatives and experienced higher levels of distress than women in the other three clusters. These results highlight the need to consider the psychological profile of women undergoing genetic testing when designing counselling interventions and messages.
    Psychology & Health 07/2011; 26(10):1327-43. · 1.95 Impact Factor
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    ABSTRACT: Cancer prevention clinical trials seek to enroll individuals at increased risk for cancer. Little is known about attitudes among physicians and at-risk individuals towards cancer prevention clinical trials. We sought to characterize barriers to prevention trial participation among medical oncologists and first-degree relatives of their patients. Physician participants were practicing oncologists in Pennsylvania. Eligible first-degree participants were adult relatives of a cancer patient being treated by one of the study physicians. The influence of perceived psychosocial and practical barriers on level of willingness to participate in cancer prevention clinical trials was investigated. Response rate was low among physicians, 137/478 (29%), and modest among eligible first-degree relatives, 82/129 (64%). Lack of access to an eligible population for prevention clinical trials was the most commonly cited barrier to prevention clinical trials among oncologists. Nearly half (45%) of first-degree relatives had not heard of cancer prevention clinical trials, but 68% expressed interest in learning more, and 55% expressed willingness to participate. In the proportional odds model, greater information source seeking/responsiveness (i.e., interest in learning more about clinical prevention trials from more information sources) (p = 0.04), and having fewer psychosocial barriers (p = 0.02) were associated with a greater willingness to participate. Many individuals who may be at greater risk for developing cancer because of having a first-degree relative with cancer are unaware of the availability of clinical cancer prevention trials. Nonetheless, many perceive low personal risk associated with these studies, and are interested in learning more.
    Acta oncologica (Stockholm, Sweden) 08/2010; 49(6):757-66. · 2.27 Impact Factor

Publication Stats

185 Citations
62.93 Total Impact Points

Institutions

  • 2011–2014
    • Cancer Support Community
      Washington, Washington, D.C., United States
    • Community College of Philadelphia
      Philadelphia, Pennsylvania, United States
    • Treatment Research Institute, Philadelphia PA
      Philadelphia, Pennsylvania, United States
  • 2003–2010
    • Fox Chase Cancer Center
      Philadelphia, Pennsylvania, United States