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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.  Preventing Postpartum Smoking Relapse Among Inner City Women: Development of a Theory-Based and Evidence-Guided Text Messaging Intervention 
JMIR Research Protocols  2014;3(2):e20.
Underserved women are at high risk for smoking relapse after childbirth due to their unique socioeconomic and postpartum stressors and barriers. Mobile text messaging technology allows delivery of relapse prevention programs targeted to their personal needs over time.
To describe the development of a social-cognitive theory-based and evidence-guided text messaging intervention for preventing postpartum smoking relapse among inner city women.
Guided by the cognitive-social health information processing framework, user-centered design, and health communication best practices, the intervention was developed through a systematic process that included needs assessment, followed by an iterative cycling through message drafting, health literacy evaluation and rewriting, review by target community members and a scientific advisory panel, and message revision, concluding with usability testing.
All message content was theory-grounded, derived by needs assessment analysis and evidence-based materials, reviewed and revised by the target population, health literacy experts, and scientific advisors. The final program, “Txt2Commit,” was developed as a fully automated system, designed to deliver 3 proactive messages per day for a 1-month postpartum smoking relapse intervention, with crave and lapse user-initiated message functions available when needed.
The developmental process suggests that the application of theory and best practices in the design of text messaging smoking cessation interventions is not only feasible but necessary for ensuring that the interventions are evidence based and user-centered.
PMCID: PMC4004157  PMID: 24698804
smoking relapse intervention; low-income women; mHealth; text messaging
3.  Implementation of a Theory-based, Non-clinical Patient Navigator Program to Address Barriers in an Urban Cancer Center Setting 
Cancer patients face a myriad of psychosocial and practical issues. Especially challenging is the time from an initial diagnosis to the onset of treatment and patient navigation services are important to guide patients, especially underserved populations, through this maze of uncertainty. Here we report on the Pennsylvania Patient Navigator Demonstration Project (PaPND) designed to evaluate the acceptability, feasibility, and impact of a culturally and linguistically appropriate non-clinical navigator program. The development of the project, based on behavioral theory and community-based participatory research principles, is described. Forty-four cancer patients from diverse backgrounds participated, which included a baseline assessment, navigation services, and a four week and twelve week follow-up assessment. On average, participants experienced 1.8 barriers with transportation and insurance issues the most common barriers. The majority (56%) of the barriers required more than an hour of the navigator’s time to address, with insurance, transportation and caregiver/support issues requiring the most time. Overall patients were fairly satisfied with the navigation services. The findings showed improvement patient’s stress-related thoughts, cognition (understanding of their disease), expectancies and beliefs or values/goals, as well as self-efficacy of managing cancer related issues from the baseline to follow-up assessments. The evaluation results suggest that providing and connecting cancer patients to appropriate information to improve their understanding of their diagnosis and recommended treatments needs to be addressed, and where the integration of non-clinical and clinical navigation is essential. In addition, more attention to the assessment of psychosocial issues, such as the patients’ emotional worries, and more comprehensive training in these areas would enhance navigation programs.
PMCID: PMC4222195  PMID: 25383260
cancer; non-clinical navigation; medically underserved; urban community; case management
4.  Predictors of Smoking Cessation Counseling Adherence in a Socioeconomically Disadvantaged Sample of Pregnant Women 
Journal of health care for the poor and underserved  2012;23(3):10.1353/hpu.2012.0096.
Implementing and evaluating smoking cessation interventions in underserved populations has been found difficult due to high rates of non-adherence to the prescribed protocol. To understand better the barriers to cessation participation, we studied low-income inner-city pregnant women who were enrolled in either a standard or highly intensive quit smoking counseling program. The results showed that 1) in the prenatal phase, non-attendance was predicted by a greater number of cigarettes smoked per day; 2) in the postpartum follow-up phase, non-attendance was predicted by lower educational level and higher self-efficacy for quitting smoking; and 3) participants with more children living at home were at increased risk of rescheduling the postpartum follow-up session. These findings suggest that innovative delivery strategies are needed more effectively to assess and address risk factors for non-adherence to smoking cessation trials among underserved minority pregnant/postpartum smokers.
PMCID: PMC3825252  PMID: 24212170
Smoking cessation; pregnancy; postpartum; counseling adherence; counseling retention; intervention delivery
5.  New Strategies in Ovarian Cancer: Uptake and experience of women at high risk of ovarian cancer who are considering risk-reducing salpingo-oophorectomy 
This paper reviews factors associated with uptake of risk-reducing salpingo-oophorectomy by women at increased hereditary risk for ovarian cancer, as well as quality of life issues following surgery. Forty one research studies identified through PubMed and PsychInfo met inclusion criteria. Older age, having had children, a family history of ovarian cancer, a personal history of breast cancer, prophylactic mastectomy, and BRCA1/2 mutation carrier status increase the likelihood of undergoing surgery. Psychosocial variables predictive of surgery uptake include greater perceived risk of ovarian cancer and cancer-related anxiety. Most women report satisfaction with their decision to undergo surgery and both lower perceived ovarian cancer risk and less cancer-related anxiety as benefits. Hormonal deprivation is the main disadvantage reported, particularly by premenopausal women who are not on hormonal replacement therapy (HRT). The evidence is mixed regarding satisfaction with the level of information provided prior to surgery, although generally women report receiving insufficient information regarding the pros and cons of HRT. These findings indicate that when designing decision aids, demographic, medical history, and psychosocial variables need to be addressed in order to facilitate quality decision making.
PMCID: PMC3107031  PMID: 20829330
ovarian risk; prophylactic oophorectomy; patient decision making; quality of life
6.  Primary Prevention, Aging, and Cancer: Overview and Future Perspectives 
Cancer  2008;113(12 Suppl):3484-3492.
Cancer specific primary prevention efforts for the geriatric population are not well-understood and are currently underutilized, despite the rapidly growing elderly population. Lifestyle changes such as smoking cessation, dietary change, and increasing physical activity have been shown to decrease the incidence of cancer in younger populations. However, a multitude of conceptual, methodological, and dissemination challenges arise when the goal is to apply primary prevention of cancer to the elderly. The state of the science is reviewed to reveal barriers in the uptake of cancer specific primary prevention practices, including the lack of data for the applicability of clinical research findings to older populations. Under representation of older adults in behavioral trials and research programs is hindering progress in understanding the physical health and lifestyle choices of older people. Efforts directed towards prevention in terms of promoting health behaviors may not only be clinically advantageous, but also cost-effective. Additionally, models for translating research findings on primary prevention from younger individuals to the elderly population needs to be addressed. Practitioners need to better understand opportunities for cancer specific primary prevention could enhance chronic disease management.
PMCID: PMC2875677  PMID: 19058141
Primary prevention; Cancer; Behavioral research; Aging adults; Comorbidity
7.  Factors Predicting Adherence to Risk Management Behaviors of Women at Increased Risk for Developing Lymphedema 
Lymphedema affects 20-30% of women following breast cancer treatment. However, even when women are informed, they do not necessarily adhere to recommended lymphedema self-management regimens. Utilizing the Cognitive-Social Health Information Processing framework, we assessed cognitive and emotional factors influencing adherence to lymphedema risk management.
Women with breast cancer who had undergone breast and lymph node surgery were recruited through the Fox Chase Cancer Centre breast clinic. Participants (N=103) completed measures of lymphedema-related perceived risk, beliefs and expectancies, distress, self-regulatory ability to manage distress, knowledge, and adherence to risk management behaviors. They then received the American Cancer Society publication “Lymphedema: What Every Woman with Breast Cancer Should Know”. Cognitive and affective variables were reassessed at 6- and 12-months post-baseline.
Maximum likelihood multilevel model analyses indicated that overall adherence increased over time, with significant differences between baseline and 6- and 12- month assessments. Adherence to wearing gloves was significantly lower than that for all other behaviors except electric razor use. Distress significantly decreased, and knowledge significantly increased, over time. Greater knowledge, higher self-efficacy to enact behaviors, lower distress, and higher self-regulatory ability to manage distress were associated with increased adherence.
Women who understand lymphedema risk management and feel confident in managing this risk are more likely to adhere to recommended strategies. These factors should be rigorously assessed as part of routine care to ensure that women have the self-efficacy to seek treatment and the self-regulatory skills to manage distress, which may undermine attempts to seek medical assistance.
PMCID: PMC4270823  PMID: 24970542
breast cancer; lymphedema; cognitive; affective; adherence; self-care
8.  Monitoring Style of Coping with Cancer Related Threats: A Review of the Literature 
Journal of behavioral medicine  2014;37(5):931-954.
Building on the Cognitive-Social Health Information-Processing model, this paper provides a theoretically guided review of monitoring (i.e., attend to and amplify) cancer-related threats. Specifically, the goals of the review are to examine whether individuals high on monitoring are characterized by specific cognitive, affective, and behavioral responses to cancer-related health threats than individuals low on monitoring and the implications of these cognitive-affective responses for patient-centered outcomes, including patient-physician communication, decision-making and the development of interventions to promote adherence and adjustment. A total of 74 reports were found, based on 63 studies, 13 of which were intervention studies. The results suggest that although individuals high on monitoring are more knowledgeable about health threats, they are less satisfied with the information provided. Further, they tend to be characterized by greater perceived risk, more negative beliefs, and greater value of health-related information and experience more negative affective outcomes. Finally, individuals high on monitoring tend to be more demanding of the health providers in terms of desire for more information and emotional support, are more assertive during decision-making discussions, and subsequently experience more decisional regret. Psychoeducational interventions improve outcomes when the level and type of information provided is consistent with the individual's monitoring style and the demands of the specific health threat. Implications for patient-centered outcomes, in terms of tailoring of interventions, patient-provider communication, and decision-making, are discussed.
PMCID: PMC4136970  PMID: 24488543
monitoring; cancer; communication; decision-making; tailored interventions; adherence
9.  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
10.  Preparing Individuals to Communicate Genetic Test Results to Their Relatives: Report of a Randomized Control Trial 
Familial cancer  2013;12(3):537-546.
This study reports a randomized clinical trial evaluating the efficacy of an intervention to prepare individuals to communicate BRCA1/BRCA2 results to family members.
Women aged 18 years and older, who had genetic testing, and who had adult first-degree relatives (FDRs), were randomly assigned to a communication skills-building intervention or a wellness control session. Primary outcomes were the percentage of probands sharing test results, and the level of distress associated with sharing. The ability of the Theory of Planned Behavior variables to predict the outcomes was explored.
Four hundred twenty-two women were enrolled in the study, 219 (intervention) and 203 (control). Data from 137 in the intervention group and 112 in the control group were analyzed. Two hundred forty-nine probands shared test results with 838 relatives (80.1%). There were no significant differences between study groups in the primary outcomes. Combining data from both arms revealed that perceived control and specific social influence were associated with sharing. Probands were more likely to share genetic test results with their children, female relatives and relatives who they perceived had a favorable opinion about learning the results.
The communication skills intervention did not impact sharing of test results. The proband’s perception of her relative’s opinion of genetic testing and her sense of control in relaying this information influenced sharing. Communication of test results is selective, with male relatives and parents less likely to be informed.
Prevalent psychosocial factors play a role in the communication of genetic test results within families.
PMCID: PMC3706561  PMID: 23420550
Genetic testing; BRCA1/2; family communication; theory of planned behavior; social pressure
11.  Responding to a Significant Recruitment Challenge within Three Nationwide Psycho-Educational Trials for Cancer Patients 
When faced with a significant recruitment challenge for three nationwide psycho-educational trials targeting prostate and breast cancer patients, the Cancer Information Service Research Consortium initiated outreach efforts to increase accrual. Recruitment is reported by major outreach strategy to inform the use of similar campaigns, either as primary recruitment efforts or to supplement “in-reach” recruitment within oncology settings.
During a 33-month period, recruitment was tracked from the National Cancer Institute’s Cancer Information Service (CIS), the American Cancer Society (ACS), Dr. Susan Love Research Foundation’s Love/Avon Army of Women (AOW), Internet advertising, press releases, radio/television interviews, recruitment materials in community venues, and outreach to churches and cancer support organizations.
Across projects, the majority (89%) of recruited participants (N = 2,134) was obtained from the CIS (n = 901, 19 months of recruitment), AOW (n = 869, 18 months), and ACS (n = 123, 12 months). Other efforts showed minimal gain in recruitment.
Cancer information programs (e.g., CIS, ACS) and registries of individuals willing to participate in cancer-related research (e.g., AOW) can represent exceptional resources for outreach recruitment of cancer patients, especially when the eligibility criteria are highly restrictive. However, these resources do not yield samples representative of the larger population of adults diagnosed with cancer, and conclusions from such trials must be tempered accordingly.
Implications for cancer survivors
Inadequate recruitment to randomized controlled trials limits the creation of useful interventions for cancer survivors. By enrolling in cancer registries and taking part in research, cancer survivors can contribute to the development of effective resources for the survivor population.
PMCID: PMC3737366  PMID: 23595235
cancer; accrual; recruitment; randomized controlled trial; psychoeducational; survivorship
12.  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
13.  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
14.  Psychosocial approaches to participation in BRCA1/2 genetic risk assessment among African American women: a systematic review 
Journal of Community Genetics  2013;5(2):89-98.
Breast cancer is a significant health concern for African American women. Nonetheless, uptake of genetic risk assessment (including both genetic counseling and testing) for breast cancer gene mutations among these populations remains low. This paper systematically reviews cognitive (i.e., beliefs) and affective (i.e., emotions) factors influencing BRCA1/2 genetic risk assessment among African American women as well as psychosocial interventions to facilitate informed decision making in this population. A systematic search of CINAHL, PubMed, and PsycINFO was undertaken, yielding 112 published studies. Of these, 18 met the eligibility criteria. African American woman are likely to participate in genetic risk assessment if they are knowledgeable about cancer genetics, perceive a high risk of developing breast cancer, have low expectancies of stigmatization from medical professionals, view themselves as independent from family, and have fatalistic beliefs and a future temporal orientation. Anticipated negative affective responses, such as an inability to “handle” the results of testing, are barriers to uptake. Specific perceptions, beliefs, and emotional factors are associated with genetic risk assessment among African American women. Understanding these factors is key in the development of interventions to facilitate informed decision making in this population.
PMCID: PMC3955455  PMID: 23934762
Genetic testing; African American; Breast cancer; Review; BRCA1/2
15.  Cancer Survivors and the Patient-Centered Medical Home 
Survivor care plans have been described as useful tools for enhancing the quality of follow-up care that cancer survivors receive after their active treatment has been completed. The relative success of current survivor care plan models is strongly dependent on the actions of individual patients. In this qualitative study of 33 cancer survivors, we explored patients’ understanding of follow-up care and their motivations and resources for seeking care. Three types of survivor experiences were identified from narratives of patients treated in community oncology and NCI designated comprehensive cancer centers, ranging from non-activated patients who need enhanced health care communication and decision support to navigate their care to highly activated patients adept at navigating complex health care settings. Using the Patient-Centered Medical Home as a conceptual framework, we propose a research, policy and practice agenda that advocates for multi-faceted decision support to enhance cancer survivorship and follow-up care.
PMCID: PMC3628767  PMID: 23606921
16.  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
17.  The impact of misclassification due to survey response fatigue on estimation and identifiability of treatment effects 
Statistics in medicine  2011;30(30):3560-3572.
Response fatigue can cause measurement error and misclassification problems in survey research. Questions asked later in a long survey are often prone to more measurement error or misclassification. The response given is a function of both the true response and participant response fatigue. We investigate the identifiability of survey order effects and their impact on estimators of treatment effects. The focus is on fatigue that affects a given answer to a question rather than fatigue that causes non-response and missing data. We consider linear, Gamma, and logistic models of response that incorporate both the true underlying response and the effect of question order. For continuous data, survey order effects have no impact on study power under a Gamma model. However, under a linear model that allows for convergence of responses to a common mean, the impact of fatigue on power will depend on how fatigue affects both the rate of mean convergence and the variance of responses. For binary data and for less than a 50% chance of a positive response, order effects cause study power to increase under a linear probability (risk difference) model, but decrease under a logistic model. The results suggest that measures designed to reduce survey order effects might have unintended consequences. We present a data example that demonstrates the problem of survey order effects.
PMCID: PMC3552436  PMID: 21953305
18.  Build It, and Will They Come? Unexpected Findings from a Study on a Web-Based Intervention to Improve Colorectal Cancer Screening 
Given the extensive utilization of the Internet for health information, web-based health promotion interventions are widely perceived as an effective communication channel. This study was conducted to determine utilization of a web-based intervention intended to improve colorectal cancer screening in a population of women who are at average risk and non-compliant to current screening recommendations. The study was a randomized controlled trial designed to compare the effectiveness of colorectal cancer screening educational materials delivered via the Internet versus a printed format. In three years, 391 women seen for routine obstetrics/gynecology follow-up at two academic centers provided relevant survey information. Of these, 130 were randomized to the web intervention. Participants received voluntary access to a password protected, study specific web site that provided information about colorectal cancer and colorectal cancer screening options. The main outcome measures were self-reported and actual website utilization. Only 24.6% of women logged onto the website. Age was the only variable that differentiated users from non-users (p = .03). In contrast, 16% of participants self-reported web use. There was significant discordance between the veracity of actual and self-reported use (p = .004). Among true users, most (81%) logged on once only. These findings raise questions about how to increase utilization of important health communication interventions.
PMCID: PMC3257821  PMID: 22217118
19.  Cancer survivors and the patient-centered medical home 
Survivor care plans have been described as useful tools for enhancing the quality of follow-up care that cancer survivors receive after their active treatment has been completed. The relative success of current survivor care plan models is strongly dependent on the actions of individual patients. In this qualitative study of 33 cancer survivors, we explored patients’ understanding of follow-up care and their motivations and resources for seeking care. Three types of survivor experiences were identified from narratives of patients treated in community oncology and National Cancer Institute-designated comprehensive cancer centers, ranging from nonactivated patients who need enhanced health care communication and decision support to navigate their care to highly activated patients adept at navigating complex health care settings. Using the patient-centered medical home as a conceptual framework, we propose a research, policy, and practice agenda that advocates for multifaceted decision support to enhance cancer survivorship and follow-up care.
PMCID: PMC3628767  PMID: 23606921
Cancer survivors; Patient-centered medical home; Qualitative research; Cancer survivorship; Cancer follow-up
20.  The development and preliminary testing of a multimedia patient–provider survivorship communication module for breast cancer survivors 
Patient education and counseling  2012;88(2):344-349.
This paper describes the development of a theory-guided and evidence-based multimedia training module to facilitate breast cancer survivors’ preparedness for effective communication with their health care providers after active treatment.
The iterative developmental process used included: (1) theory and evidence-based content development and vetting; (2) user testing; (3) usability testing; and (4) participant module utilization.
Formative evaluation of the training module prototype occurred through user testing (n = 12), resulting in modification of the content and layout. Usability testing (n = 10) was employed to improve module functionality. Preliminary web usage data (n = 256, mean age = 53, 94.5% White, 75% college graduate and above) showed that 59% of the participants accessed the communication module, for an average of 7 min per login.
The iterative developmental process was informative in enhancing the relevance of the communication module. Preliminary web usage results demonstrate the potential feasibility of such a program.
Practice implications
Our study demonstrates survivors’ openness to the use of a web-based communication skills training module and outlines a systematic iterative user and interface program development and testing process, which can serve as a prototype for others considering such an approach.
PMCID: PMC3419388  PMID: 22770812
Patient–provider communication; Web-based patient education; Formative evaluation; Usability testing; Breast cancer survivorship
21.  Literacy Assessment of Family Health History Tools for Public Health Prevention 
Public health genomics  2010;14(4-5):222-237.
This study aimed to systematically identify and evaluate the readability and document complexity of currently available family history tools for the general public.
Three steps were undertaken to identify family history tools for evaluation: 1) Internet searches, 2) expert consultation, and 3) literature searches. Tools identified were assessed for readability using the Simple Measure of Gobbledygook (SMOG) readability formula. The complexity of documents (i.e., forms collecting family history information) was assessed using the PMOSE/IKIRSCH document readability formula.
A total of 78 tools were identified, 47 of which met the criteria for inclusion. SMOG reading grade levels for multimedia-based tools ranged from 10.1 to 18.3, with an average score of 13.6. For print-based tools, SMOG ranged from 8.7 to 14.1, with an average score of 12.0. Document complexity ranged from very low complexity (level 1 proficiency) to high complexity (level 4 proficiency).
The majority of tools are written at a reading grade level that is beyond the 8th grade average reading level in the United States. The lack of family history tools that are easy to read or use may compromise their potential effectiveness in identifying individuals at increased risk for chronic diseases in the general population.
PMCID: PMC2891255  PMID: 20090283
family health history; genetic literacy; health literacy; readability; document complexity
22.  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
23.  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
24.  Beliefs about the causes of breast and colorectal cancer among women in the general population 
Cancer causes & control : CCC  2009;21(1):99-107.
To describe and compare the causal beliefs and attributions about breast and colorectal cancer among unaffected women in the general population.
A total of 439 unaffected women in the general population were recruited to complete a web-based survey assessing causal beliefs for either breast (N = 211) or colorectal cancer (N = 228).
Heredity was ranked as the most important causal factor, followed by diet or eating habits for both cancer sites. Women endorsed the following causes of breast or colorectal cancer respectively: heredity (84.4%, 78.5%), diet or eating habits (46.4%, 69.7%), pollution in the environment (57.6%, 40.3%), aging (48.8%, 57.5%), alcohol (29.9%, 40.8%), smoking (58.3%, 50.8%), stress (27.5%, 29.4%), and lack of exercise (35.7%, 44.3%). Other factors such as prior surgery on the breast (23.7%) and colon (32.9%), or changes in one’s immune system (60.6% - breast; 59.2% - colon) were also endorsed by some women. Significant differences in the degree of endorsement for various causes of breast and colorectal cancer were identified.
Both genetic and environmental causes for breast and colorectal cancer are endorsed by unaffected women. Misconceptions about the causes of these cancers are important targets for public education and risk communication efforts.
PMCID: PMC2809801  PMID: 19787437
breast and colorectal cancer; causal beliefs; attributions; risk factors; knowledge
25.  Breast, Colorectal and Prostate Cancer Screening for Cancer Survivors and Non-Cancer Patients in Community Practices 
Journal of General Internal Medicine  2009;24(Suppl 2):487-490.
Cancer survivors have cancer surveillance and preventive screening needs that require monitoring. Little is known regarding their patterns of care in community primary care practices.
Secondary analysis of 750 baseline patient surveys and medical record audits for patients ages 50+ years in 25 community-based primary care practices ( = 109 survivors and 641 noncancer patients).
Patient self-reported screening rates for breast cancer (72%), colorectal cancer (81%) and prostate cancer (77%) were higher for cancer survivors compared to noncancer patients (69%, 67%, 53%, respectively). Screening rates documented in the primary care records were lower for all cancers. Cancer survivors were more likely than others to report having been screened for colorectal cancer ( = 0.002) even after excluding colorectal cancer survivors from the analysis ( = 0.034). Male cancer survivors were more likely to report being screened for prostate cancer than those without cancer ( < 0.001), even after excluding prostate cancer survivors ( = 0.020). There were no significant differences in either self-reported or medical record report of breast cancer screening rates among cancer survivors and noncancer patients.
Cancer survivors were more likely to self-report receipt of cancer screening than noncancer patients. Medical record reports of cancer screening were lower than self-reports for cancer survivors and noncancer patients. Identifying factors that affect cancer screening among cancer survivors is important and has implications for intervention design.
PMCID: PMC2763158  PMID: 19838855
chart audit; cancer screening; cancer survivors; primary care

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