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1.  Psychosocial Barriers to Follow-up Adherence After an Abnormal Cervical Cytology Test Result Among Low-Income, Inner-City Women 
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.
PMCID: PMC4169747  PMID: 24718518
cervical risk; psychosocial barriers; low-income women; adherence
2.  Application of best practice approaches for designing decision support tools: The preparatory education about clinical trials (PRE-ACT) study 
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.
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.
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.
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.
PMCID: PMC4171039  PMID: 24813474
Decision support tools; Decision aids; Clinical trials; Cancer
3.  A Web-Based Communication Aid for Patients with Cancer: The CONNECT™ Study 
Cancer  2013;119(7):1437-1445.
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.
CONNECT includes assessment of patient values, goals, and communication preferences; patient communication skills training; and a pre-consult physician summary report. CONNECT was tested in a three-arm, prospective, randomized clinical trial. Prior to the initial medical oncology consultation, adult patients with advanced cancer were randomized to (a) control; (b) CONNECT with physician summary, or (c) CONNECT without physician summary. Outcomes were assessed with post-consultation surveys.
Of 743 patients randomized, 629 completed post-consultation surveys. Patients in the intervention arms (versus control) felt that the CONNECT program made treatment decisions easier to reach (p=0.003) and helped them to be more satisfied with these decisions (p<0.001). In addition, patients in the intervention arms reported higher levels of satisfaction with physician communication format (p=0.026) and discussion regarding support services (p=0.029) and quality of life concerns (p=0.042). The physician summary did not impact outcomes. Patients with higher levels of education and poorer physical functioning experienced greater benefit from CONNECT.
This prospective randomized clinical trial demonstrates that computer-based communication skills training can positively affect patient satisfaction with communication and decision making. Measureable patient characteristics may be used to identify subgroups most likely to benefit from an intervention such as CONNECT.
PMCID: PMC3604078  PMID: 23335150
Cancer communication; health communication; physician-patient communication; decision making; computer assisted; cancer
4.  Tailored telephone counseling to improve adherence to follow-up regimens after an abnormal pap smear among minority, underserved women 
Patient education and counseling  2013;93(3):10.1016/j.pec.2013.08.008.
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.
Practice Implications
Dissemination of barriers counseling into ongoing telephone reminder calls and contacts may decrease disparities in cancer outcomes, especially among women with less than postsecondary education.
PMCID: PMC3852173  PMID: 24007767
Cervical cancer screening; Follow up adherence; Tailored counseling
5.  Evaluation of question-listing at the Cancer Support Community 
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.
PMCID: PMC3717975  PMID: 24073167
Visit preparation; Coaching; Shared decision making; Patient participation; Professional–patient relations; Questioning; SCOPED
6.  Evaluation of the efficacy and usability of NCI’s Facing Forward booklet in the cancer community setting 
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.
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.
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.
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.
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.
PMCID: PMC3626437  PMID: 23229087
Survivorship; Cancer control; Psychosocial interventions; Facing Forward
7.  The Identification of Cognitive Profiles among Women Considering BRCA1/2 Testing through the Utilization of Cluster Analytic Techniques 
Psychology & health  2011;26(10):1327-1343.
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 counseling, participants (N = 171) completed a study questionnaire concerning their cognitive and affective responses to 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 were unaffected, whereas cluster four consisted almost entirely of affected women. 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 counseling interventions and messages.
PMCID: PMC3197930  PMID: 21756124
breast and ovarian cancer risk; cluster analysis; cognitive profiles; genetic testing; psychological distress
8.  Standard versus prosocial online support groups for distressed breast cancer survivors: a randomized controlled trial 
BMC Cancer  2011;11:379.
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.
Trial Registration NCT01396174
PMCID: PMC3201039  PMID: 21867502
9.  Barriers to Participation in Cancer Prevention Clinical Trials 
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.
PMCID: PMC2901417  PMID: 20515420
Cancer; prevention; clinical trials; barriers
10.  Enhanced Counseling for Women Undergoing BRCA1/2 Testing: Impact on Knowledge and Psychological Distress – Results From a Randomized Clinical Trial 
Psychology & health  2010;25(4):401-415.
This randomized controlled trial evaluated the impact of an enhanced counseling intervention on knowledge about the heritability of breast and ovarian cancer and distress, as a function of BRCA test result, among high-risk women. Before deciding about whether or not to undergo genetic testing, participants were randomly assigned to the enhanced counseling intervention (N = 69), designed to promote cognitive and affective processing of cancer risk information (following the standard individualized counseling session), or to the control condition (N = 65), which involved standard individualized counseling followed by a general health information session to control for time and attention. Women in the enhanced counseling group exhibited greater knowledge than women in the control group one week after the intervention. Further, at the affective level, the intervention was found to be most beneficial for women testing positive: specifically one week after test result disclosure, women in the intervention group who tested positive experienced lower levels of distress than women in the control group who tested positive. The findings suggest that the design of counseling aids should include a component that explicitly activates the individual's cognitive-affective processing system.
PMCID: PMC2866521  PMID: 20204945
Genetic testing; enhanced counseling; intrusive ideation; breast cancer; ovarian cancer
11.  Cancer Patient Preferences for Quality and Length of Life 
Cancer  2008;113(12):3459-3466.
Optimal patient decision making requires integration of patient values, goals, and preferences with information received from the physician. In the case of life-threatening illness such as cancer, the weights placed on quality of life (QOL) and length of life (LOL) represent critical values. The objective of this study is to describe cancer patient values regarding QOL and LOL, and explore associations with communication preferences.
Patients with advanced cancer completed a computer-based survey prior to the initial consultation with a medical oncologist. Assessments included sociodemographics, physical and mental health state, values regarding quality and length of life, communication preferences and cancer-related distress.
Seven hundred forty three advanced cancer patients were enrolled. Among 459 advanced cancer patients, fifty-five percent of patients equally valued QOL and LOL, 27% preferred QOL, and 18% preferred LOL. Patients with a QOL preference had lower levels of cancer-related distress (p < 0.001). QOL preference was associated with older age (p = 0.001), male gender (p = 0.003), and higher education (p = 0.062). Patients who preferred LOL over QOL desired a more supportive and less pessimistic communication style from their oncologists.
These data indicate that a values preference for length vs. quality of life may be simply measured, and is associated with wishes regarding the nature of oncologist communication. Awareness of these values during the clinical encounter could improve decision making by influencing the style and content of the communication between oncologists and their patients.
PMCID: PMC2606934  PMID: 18988231
Quality of Life; Cancer Communication; Doctor-Patient Communication; Patient Preferences; Communication Preferences; Cancer-Related Distress; Length of Life Preferences; Patient Decision Making; Cancer Communication Aid; Patient Values
12.  Colorectal Cancer Knowledge is Not Associated with Screening Compliance or Intention 
Increasing patient knowledge about the value of colorectal cancer (CRC) screening is a goal of most public health education efforts. We hypothesized that a cohort of women at average risk for CRC, but non-compliant with standard screening recommendations, would demonstrate low levels of CRC related knowledge and underestimate their personal risk for developing CRC.
Baseline survey results are reported from a prospective trial designed to improve CRC screening participation in women at average risk, but non-complaint with screening recommendations. Women scheduled for a routine gynecological office visit were identified and contacted by telephone approximately 4 weeks before their index appointment. All participants completed a 75 item baseline survey that included items assessing demographic information, CRC knowledge, risk perception and intention to participate in screening.
Women (n=318) enrolled from June, 2006-May, 2007 are included. Participants demonstrated high levels of CRC and CRC screening related knowledge answering an average of 8.6/10 items correctly (SD 1.30). The majority of these non-compliant women (1) estimated their CRC risk incorrectly (60%) and (2) had no intention of CRC screening participation in the future (65%). Multivariate models found no consistent relationships between knowledge, risk perception, and screening intent.
Greater “knowledge” alone is an inadequate stimulus to CRC screening adherence. Future interventions will require a greater understanding of the interplay between CRC-related knowledge, beliefs, risk perception, and other affective responses.
PMCID: PMC2724589  PMID: 19526412
13.  Using Health Communication Best Practices to Develop a Web-Based Provider-Patient Communication Aid: The CONNECT™ Study 
Patient education and counseling  2008;71(3):378-387.
Although there is broad consensus that careful content vetting and user testing is important in the development of technology-based educational interventions, often these steps are overlooked. This paper highlights the development of a theory-guided, web-based communication aid (CONNECT™), designed to facilitate treatment decision making among patients with advanced cancer.
The communication aid included an online survey, patient skills training module and an automated physician report. Development steps included: 1) evidence-based content development, 2) usability testing, 3) pilot testing, and 4) patient utilization and satisfaction.
Usability testing identified some confusing directions and navigation for the on-line survey and validated the relevance of the “patient testimonials” in the skills module. Preliminary satisfaction from the implementation of the communication aid showed that 66% found the survey length reasonable and 70% found it helpful in talking with the physician. Seventy percent reported the skills module helpful and about half found it affected the consultation.
Designing patient education interventions for translation into practice requires the integration of health communication best practice including user feedback along the developmental process.
Practice Implications
This developmental process can be translated to a broad array of community based patient and provider educational interventions.
PMCID: PMC2509582  PMID: 18417312
usability testing; web-based education; provider patient communication; cancer treatment; health communication; intervention development; decision aids

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