Allison M. Burton-Chase

Attitudes toward molecular testing for personalized cancer therapy

This study assessed attitudes of breast cancer patients toward molecular testing for personalized therapy and research.

Changes in screening behaviors and attitudes toward screening from pre-test genetic counseling to post-disclosure in Lynch syndrome families

The purpose of this study was to examine colonoscopy adherence and attitudes toward colorectal cancer (CRC) screening in individuals who underwent Lynch syndrome genetic counseling and testing. We evaluated changes in colonoscopy adherence and CRC screening attitudes in 78 cancer‐unaffected relatives of Lynch syndrome mutation carriers before pre‐test genetic counseling (baseline) and at 6 and 12 months post‐disclosure of test results (52 mutation negative and 26 mutation positive). While both groups were similar at baseline, at 12 months post‐disclosure, a greater number of mutation‐positive individuals had had a colonoscopy compared with mutation‐negative individuals. From baseline to 12 months post‐disclosure, the mutation‐positive group demonstrated an increase in mean scores on measures of colonoscopy commitment, self‐efficacy, and perceived benefits of CRC screening, and a decrease in mean scores for perceived barriers to CRC screening. Mean scores on colonoscopy commitment decreased from baseline to 6 months in the mutation‐negative group. To conclude, adherence to risk‐appropriate guidelines for CRC surveillance improved after genetic counseling and testing for Lynch syndrome. Mutation‐positive individuals reported increasingly positive attitudes toward CRC screening after receiving genetic test results, potentially reinforcing longer term colonoscopy adherence.

Attitudes regarding privacy of genomic information in personalized cancer therapy

OBJECTIVE To evaluate attitudes regarding privacy of genomic data in a sample of patients with breast cancer. METHODS Female patients with breast cancer (n=100) completed a questionnaire assessing attitudes regarding concerns about privacy of genomic data. RESULTS Most patients (83%) indicated that genomic data should be protected. However, only 13% had significant concerns regarding privacy of such data. Patients expressed more concern about insurance discrimination than employment discrimination (43% vs 28%, p<0.001). They expressed less concern about research institutions protecting the security of their molecular data than government agencies or drug companies (20% vs 38% vs 44%; p<0.001). Most did not express concern regarding the association of their genomic data with their name and personal identity (49% concerned), billing and insurance information (44% concerned), or clinical data (27% concerned). Significantly fewer patients were concerned about the association with clinical data than other data types (p<0.001). In the absence of direct benefit, patients were more willing to consent to sharing of deidentified than identified data with researchers not involved in their care (76% vs 60%; p<0.001). Most (85%) patients were willing to consent to DNA banking. DISCUSSION While patients are opposed to indiscriminate release of genomic data, privacy does not appear to be their primary concern. Furthermore, we did not find any specific predictors of privacy concerns. CONCLUSIONS Patients generally expressed low levels of concern regarding privacy of genomic data, and many expressed willingness to consent to sharing their genomic data with researchers.

Patterns of family health history communication among older African American adults

This qualitative study examined patterns of communication regarding family health history among older African American adults. The authors conducted 5 focus groups and 6 semi-structured interviews with African Americans aged 60 years and older (N = 28). The authors identified 4 distinct patterns of family health history communication: noncommunication, open communication, selective communication (communication restricted to certain people or topics), and one-way communication (communication not reciprocated by younger family members). In general, participants favored open family health history communication, often resulting from desires to change patterns of noncommunication in previous generations regarding personal and family health history. Some participants indicated that they were selective about what and with whom they shared health information in order to protect their privacy and not worry others. Others described family health history communication as one-way or unreciprocated by younger family members who appeared uninterested or unwilling to share personal and family health information. The communication patterns that the authors identified are consistent with communication privacy management theory and with findings from studies focused on genetic testing results for hereditary conditions, suggesting that individuals are consistent in their communication of health and genetic risk information. Findings may guide the development of health message strategies for African Americans to increase family health history communication.

Gynecologic cancer screening and communication with health care providers in women with Lynch syndrome

We evaluated knowledge of gynecologic cancer screening recommendations, screening behaviors, and communication with providers among women with Lynch syndrome (LS). Women aged ≥25 years who were at risk for LS‐associated cancers completed a semi‐structured interview and a questionnaire. Of 74 participants (mean age 40 years), 61% knew the appropriate age to begin screening, 75–80% correctly identified the recommended screening frequency, and 84% reported no previous screening endometrial biopsy. Women initiated discussions with their providers about their LS cancer risks, but many used nonspecific terms or relied on family history. Most were not offered high‐risk screening options. While many women were aware of risk‐appropriate LS screening guidelines, adherence was suboptimal. Improving communication between women and their providers regarding LS‐related gynecologic cancer risk and screening options may help improve adherence.

Screening adherence and cancer risk perceptions in colorectal cancer survivors with Lynch-like syndrome

Cancer screening recommendations for patients with Lynch‐like syndrome (LLS) are not well defined. We evaluated adherence to Lynch syndrome (LS) screening recommendations, cancer risk perceptions, and communication within the families among colorectal cancer (CRC) survivors with LLS. Thirty‐four participants with LLS completed a questionnaire about risk perception, adherence to LS screening recommendations, and communication with relatives. Clinical data were obtained from medical records. Most participants (76%) believed they should undergo colonoscopy every 1–2 years. Only 41% correctly interpreted their genetic tests as uninformative negative or as variant of unknown significance for LS. Less than half had had an upper gastrointestinal endoscopy for screening purpose. Among female participants, 86% had been screened for endometrial cancer (EC) and 71% for ovarian cancer. Most participants had informed relatives about the CRC diagnosis and advised them to undergo CRC screening, but only 50% advised female relatives to be screened for EC and only one‐third advised relatives to have genetic counseling. Most CRC survivors with LLS follow the same cancer screening recommended for LS patients but do not understand the meaning of LLS. Greater care must be devoted to communicating the implications of nondiagnostic germline mutation testing among patients with LLS.

Factors Associated with Adherence to an End-of-Study Biopsy: Lessons from the Prostate Cancer Prevention Trial (SWOG-Coordinated Intergroup Study S9217)

Background: The Prostate Cancer Prevention Trial (PCPT) was a 7-year randomized, double-blind, placebo-controlled trial of the efficacy of finasteride for the prevention of prostate cancer with a primary outcome of histologically determined prevalence of prostate cancer at the end of 7 years. Methods: A systematic modeling process using logistic regression identified factors available at year 6 that are associated with end-of-study (EOS) biopsy adherence at year 7, stratified by whether participants were ever prompted for a prostate biopsy by year 6. Final models were evaluated for discrimination. At year 6, 13,590 men were available for analysis. Results: Participants were more likely to have the EOS biopsy if they were adherent to study visit schedules and procedures and/or were in good health (P < 0.01). Participants at larger sites and/or sites that received retention and adherence grants were also more likely to have the EOS biopsy (P < 0.05). Conclusions: Our results show good adherence to study requirements 1 year before the EOS biopsy was associated with greater odds that a participant would comply with the invasive EOS requirement. Impact: Monitoring adherence behaviors may identify participants at risk of nonadherence to more demanding study end points. Such information could help frame adherence intervention strategies in future trials. Cancer Epidemiol Biomarkers Prev; 23(8); 1638–48. ©2014 AACR.

Memory Aging Knowledge and Memory Self-Appraisal in Younger and Older Adults

The purpose of this study was to examine relationships among memory aging knowledge and memory self-appraisal in college students and community-dwelling older adults. Participants completed the Knowledge of Memory Aging Questionnaire ([KMAQ] Cherry, Brigman, Hawley, & Reese, 2003) and the Memory Functioning Questionnaire ([MFQ] Gilewski, Zelinski, & Schaie, 1990). We hypothesized that poorer performance on the KMAQ stereotype scale, suggesting an ageist response bias, would be associated with more negative self-appraisals of memory. Results confirmed that responses on the KMAQ stereotype scale were significantly associated with responses on the MFQ Frequency of Forgetting scale and two shorter scales derived from the full MFQ, the memory self-efficacy scale (Zelinski & Gilewski, 2004), and a revised Seriousness of Forgetting scale after controlling for age and educational level. Implications of these findings for the development of instructional materials to improve memory aging knowledge and memory self-appraisal in adulthood are discussed.

The Use of Social Media to Recruit Participants With Rare Conditions: Lynch Syndrome as an Example

Background Social media is increasingly being used as a means of recruiting participants, particularly for investigators whose areas of interest involve rare conditions or hard-to-reach populations. However, much of the literature to date has focused on paid advertisement recruitment. Objective We used Lynch syndrome (LS), a rare hereditary cancer syndrome, as a model to demonstrate the successful partnership between researchers and a Web-based patient education and advocacy organization to facilitate participant recruitment. Methods Recruitment was undertaken in partnership with Lynch Syndrome International (LSI), an advocacy organization with a strong social media presence. After LSI published our study information, participants followed up via email or phone call. Following prescreening and consent, interested and eligible participants were then sent a secure survey link. Results Within 36 hours of a single Facebook post by the site administrators for LSI, over 150 individuals responded via phone or email. Sixty-five individuals were sent the survey link and 57 individuals completed the survey (88% response rate). Of note, these 57 individuals were geographically diverse within the Unites States, representing LS patients from 26 different states. Conclusions This approach has several advantages, including recruitment through a trusted source outside of a clinical setting, higher response rates, and cost-effectiveness with a small research team in a relatively short amount of time. Overall, social media recruitment with a trusted online partner can be highly effective in hard-to-reach clinical populations, such as patients with LS. However, this approach requires additional effort for eligibility screening.

A comparison between Lynch syndrome and sporadic colorectal cancer survivors’ satisfaction with their healthcare providers

This study evaluated provider satisfaction in a sample of colorectal cancer (CRC) survivors with and without Lynch syndrome (LS). Participants were case–case‐matched CRC survivors with (n = 75) or without (n = 75) LS (mean age of 55; range: 27–93). Participants completed a mailed questionnaire assessing demographics, clinical characteristics, healthcare utilization, psychosocial variables, and provider satisfaction. LS CRC survivors reported lower provider satisfaction scores on three subscales of the Primary Care Assessment Survey: communication (78.14 vs. 83.96; P < 0.05), interpersonal treatment (78.58 vs. 85.30; P < 0.05), and knowledge of the patient (60.34 vs. 69.86; P < 0.01). Among LS CRC survivors, predictors for mean communication and trust subscale scores were location of treatment and socioeconomic status. Higher mean depression scores also were associated with trust, while social support predicted higher satisfaction with communication. Sporadic CRC survivor satisfaction is driven largely by age (communication, interpersonal treatment) and patient anxiety (communication), while seeing a provider more often was associated with increased satisfaction with knowledge of the patient. LS CRC survivors reported lower levels of provider satisfaction than sporadic CRC survivors. LS survivors who received care at The University of Texas MD Anderson Cancer Center, a comprehensive cancer center (CCC), reported higher satisfaction than those receiving care at other institutions. Depressive symptoms and socioeconomic status may impact provider satisfaction ratings. Exploration of other potential predictors of provider satisfaction should be examined in this population. Additionally, further research is needed to examine the potential impact of provider satisfaction on adherence to medical recommendations in LS CRC survivors, particularly those being treated outside of CCCs.