Faculty Bibliography

The Institute of Medicine recommended that all patients receive survivorship care plans (SCPs) post-treatment to improve quality of follow-up care. However, little is known regarding how survivors utilize SCPs and the congruency between providers' and survivors' perspectives. Feedback from colorectal cancer survivors (in receipt of a personalized/individualized SCP) and oncology providers was obtained via interviews. Survivors noted SCPs benefits of reduced duplicative procedures and cancer worry with the synthesized treatment information. Providers noted billing/reimbursement and time investiture (for form completion) as potential barriers. Further investigation of SCPs is warranted regarding utility prior to widespread adoption in follow-up care.

OBJECTIVE: To identify whether a health-related quality of life (HRQoL) instrument intended to capture reproductive concerns is sensitive and appropriate for adolescent patients with cancer. METHODS: Pilot testing was completed by administering a 10-item instrument designed to identify reproductive concerns of female adolescent patients with cancer aged 12-18. Parents were also asked to predict their daughters' responses. Fourteen patients and parents participated. The main outcome measures were language, relevance, accuracy, sensitivity, and missing content regarding the HRQoL instrument. Two pediatric hospitals and 1 local support group for patients and survivors served as the setting for this study. RESULTS: The majority of parents provided inaccurate predictions of their daughters' responses regarding their reproductive concerns. Overall, parents underestimated their daughters' concerns because the majority of adolescents reported a strong desire for future parenthood whereas parents expected their daughters to be satisfied with survivorship. CONCLUSIONS: Adolescent patients with cancer have strong reproductive concerns; however, this may not be captured on current HRQoL instruments and may be further neglected due to parents' unawareness. Discussions should be encouraged with adolescent patients before beginning treatment regarding their concerns and values about parenting in the future and cannot rely on parent-proxy reports.

STUDY OBJECTIVE: The current study presents findings from a qualitative examination of free text comments from a national survey of U.S. physicians on human papillomavirus vaccine recommendation beliefs and practices. Qualitative analyses of free text physician responses may offer a more complete and physician-driven description of influences on human papillomavirus vaccine recommendation. DESIGN AND PARTICIPANTS: In 2009, a survey assessing physicians' knowledge, attitudes, and human papillomavirus vaccination practices was conducted among a national sample of U.S. physicians practicing Family Medicine, Pediatrics, or Obstetrics/Gynecology (response rate 67.8%). Qualitative comments were analyzed using a Grounded Theory approach. RESULTS: Of 1008 completed surveys, 112 participants provided comments, which were organized into three primary HPV vaccine-related themes: (a) comments about cost of the vaccine, (b) comments about institutional policies and procedures, and (c) physicians' personal views and one secondary theme related to survey methodology: the parent study's use of an upfront cash incentive. Many comments pertained to issues that were queried in the closed-end survey items; however, some comments provided insight into understudied areas (e.g., physician attitudes regarding survey methodology). CONCLUSION: Physician respondents used the free text space to reemphasize issues that were most important to them and to offer insight about aspects of the vaccine and the survey process.

OBJECTIVE: To describe processes used to develop a multi-media psycho-educational intervention to prepare patients for a discussion about cancer clinical trials (CTs). METHODS: Guided by a Steering Committee, formative research was conducted to develop an informative and engaging tool about cancer CTs. Twenty-three patients and caregivers participated in formative in-depth interviews to elicit information about perceptions of cancer CTs to inform production of a new media product. RESULTS: Formative research revealed participants had concerns about experimentation, held beliefs that cancer CTs were for patients who had no other treatment options, and wanted a balance of information about pros and cons of CT participation. The value of physicians as credible spokespersons and the use of patients as role-models were supported. Using iterative processes, the production team infused the results into creation of a multimedia psycho-educational intervention titled Clinical Trials: Are they Right for You? CONCLUSION: An intervention, developed through an iterative consumer-focused process involving multiple stakeholders and formative research, may result in an engaging informative product. PRACTICE IMPLICATIONS: If found to be efficacious, Clinical Trials: Are they Right for You? is a low-cost and easily disseminated multimedia psycho-educational intervention to assist cancer patients with making an informed decision about cancer CTs.

African Americans are disproportionately affected by prostate cancer, yet less is known about the most salient psychosocial dimensions of quality of life. The purpose of this study was to explore the perceptions of African American prostate cancer survivors and their spouses of psychosocial issues related to quality of life. Twelve African American couples were recruited from a National Cancer Institute Comprehensive Cancer Center registry and a state-based non-profit organization to participate in individual interviews. The study was theoretically based on Ferrell's Quality of Life Conceptual Model. Common themes emerged regarding the psychosocial needs of African American couples. These themes were categorized into behavioral, social, psychological, and spiritual domains. Divergent perspectives were identified between male prostate cancer survivors and their female spouses. This study delineated unmet needs and areas for future in-depth investigations into psychosocial issues. The differing perspectives between patients and their spouses highlight the need for couple-centered interventions.

PURPOSE: The negative attitudes of patients with cancer regarding clinical trials are an important contributor to low participation rates. This study evaluated whether a brief psychoeducational intervention was effective in improving patients' attitudes as well as their knowledge, self-efficacy for decision making, receptivity to receiving more information, and general willingness to participate in clinical trials. PATIENTS AND METHODS: A total of 472 adults with cancer who had not been asked previously to participate in a clinical trial were randomly assigned to receive printed educational information about clinical trials or a psychoeducational intervention that provided similar information and also addressed misperceptions and concerns about clinical trials. The primary (attitudes) and secondary outcomes (knowledge, self-efficacy, receptivity, and willingness) were assessed via patient self-report before random assignment and 7 to 28 days later. RESULTS: Patients who received the psychoeducational intervention showed more positive attitudes toward clinical trials (P = .016) and greater willingness to participate (P = .011) at follow-up than patients who received printed educational information. Evidence of an indirect effect of intervention assignment on willingness to participate (estimated at 0.168; 95% CI, 0.088 to 0.248) suggested that the benefits of psychoeducation on willingness to participate were explained by the positive impact of psychoeducation on attitudes toward clinical trials. CONCLUSION: A brief psychoeducational intervention can improve the attitudes of patients with cancer toward clinical trials and thereby increase their willingness to participate in clinical trials. Findings support conducting additional research to evaluate effects of this intervention on quality of decision making and rates of participation among patients asked to enroll onto therapeutic clinical trials.

We report on the case of a 2-year-old female, the youngest person ever to undergo ovarian tissue cryopreservation (OTC). This patient was diagnosed with a rare form of sickle cell disease, which required a bone-marrow transplant, and late effects included high risk of future infertility or complete sterility. Ethical concerns are raised, as the patient's mother made the decision for OTC on the patient's behalf with the intention that this would secure the option of biological childbearing in the future. Based on Beauchamp and Childress's principlism approach of respect for autonomy, nonmaleficence, beneficence, and justice, pursing OTC was ethically justified.

PURPOSE: To examine changes in cancer-related knowledge, distress, and decisional conflict from pre- to post-genetic counseling (GC) in before (BDS) and after (ADS) definitive surgery breast cancer (BC) patients. METHODS: Sociodemographic and clinical characteristics were collected at baseline; primary outcome data were collected before (T1) and after (T2) pretest GC. Within group changes for cancer-related knowledge, distress, and decisional conflict over genetic testing were compared by Wilcoxon signed-rank tests. RESULTS: Of 103 BC patients, 87 were ADS and 16 were BDS. Analyses revealed that both groups reported significant increases in knowledge between T1 and T2 (median change 4.2, p = 0.004, and 2.7, p < 0.001, for BDS and ADS patients, respectively). Overall cancer-related distress showed a downward trend between T1 and T2 for both groups and was significant for BDS patients (p = 0.041). Reports of BDS patients trended toward overall and subscale-specific increases in decisional conflict, with the exception of the uncertainty which trended downward, but did not reach significance. Overall decisional conflict decreased in ADS patients, approaching marginal significance (p = 0.056), with significant improvements in informed decision making (median change -12.6, p < 0.001; i.e., pretest GC yielded improved knowledge of benefits, risks, and side effects of available options). CONCLUSIONS: These pilot data suggest that pretest GC increases cancer-related knowledge for both BDS and ADS patients, decreases distress in BDS patients, and improves informed decision making in ADS patients. Future studies with larger sample sizes are needed to replicate these results.

OBJECTIVES: We tested a series of self-help booklets designed to prevent postpartum smoking relapse. METHODS: We recruited 700 women in months 4 through 8 of pregnancy, who quit smoking for their pregnancy. We randomized the women to receive either (1) 10 Forever Free for Baby and Me (FFB) relapse prevention booklets, mailed until 8 months postpartum, or (2) 2 existing smoking cessation materials, as a usual care control (UCC). Assessments were completed at baseline and at 1, 8, and 12 months postpartum. RESULTS: We received baseline questionnaires from 504 women meeting inclusion criteria. We found a main effect for treatment at 8 months, with FFB yielding higher abstinence rates (69.6%) than UCC (58.5%). Treatment effect was moderated by annual household income and age. Among lower income women (< $30 000), treatment effects were found at 8 and 12 months postpartum, with respective abstinence rates of 72.2% and 72.1% for FFB and 53.6% and 50.5% for UCC. No effects were found for higher income women. CONCLUSIONS: Self-help booklets appeared to be efficacious and offered a low-cost modality for providing relapse-prevention assistance to low-income pregnant and postpartum women.

PURPOSE: The risk of infertility increases after cancer treatment with chemotherapy, with radiotherapy, and in some cases with surgery. The goal of these secondary analyses was to examine potential differences in practice behaviors, specifically referral and discussion of fertility preservation, among oncologists (ie, surgical oncologists, medical oncologists, and radiation oncologists). METHODS AND MATERIALS: Two items examining discussion and referral for fertility preservation were administered as part of a larger 53-item survey measuring oncologists' fertility preservation knowledge, practice behaviors, and attitudes was developed and mailed to a nationally representative, stratified, random sample of US oncology care physicians. RESULTS: There was a significant difference by oncology subspecialty in discussion of the impact of treatment on future fertility for cancer patients of childbearing age. Follow-up chi(2) tests of discussion and specialty showed 82% of radiation oncologists "always/often" discussed the impact of treatment on fertility, compared with 51% for surgical oncologists. There was not a significant difference between oncology specialty and reported referrals to reproductive endocrinologist with 24% to 31% of all oncologist types reporting "rarely/never" referring patients of child-bearing age to an infertility specialist or reproductive endocrinologist. CONCLUSIONS: These findings are important particularly for radiation oncologists, who may have a unique role in communicating fertility preservation options to their patients given their opportunity for multiple patient encounters. As such, there is a notable opportunity for further research into the reasons why and how to implement provider education about fertility preservation to improve quality of life and quality care for patients of reproductive potential.