Testicular cancer and genetics knowledge among familial testicular cancer family members.

PURPOSE: It was our aim to determine baseline levels of testicular cancer and genetics knowledge among members of families with Familial Testicular Cancer (FTC). METHODS: This is a sub-study of an ongoing National Cancer Institute (NCI) multidisciplinary, etiologically-focused, cross-sectional study of FTC. We evaluated 258 male and female participants including testicular cancer (TC) survivors, blood relatives and spouses to assess factors associated with a Genetic Knowledge Scale (GKS) and Testicular Cancer Knowledge Scale (TCKS). RESULTS: Knowledge levels were generally low, with genetic knowledge lower than TC knowledge (p < 0.01). Men with a personal TC history scored highest on TC knowledge, while gender, age and education differentially influenced knowledge levels, particularly among unaffected relatives. CONCLUSIONS: Prior to identifying FTC susceptibility genes, we recommend tailoring FTC genetic education to the different informational needs of TC survivors, their spouses and relatives, in preparation for the day when clinical susceptibility testing may be available.

Potential benefits of treatment summaries for survivors' health and information needs: results from a LIVESTRONG survey.

PURPOSE: Treatment summaries (TSs), a critical component of survivorship care plans, have been identified as a tool to improve outcomes for the 14 million cancer survivors in the United States. METHODS: In 2010, the LIVESTRONG Foundation fielded the LIVESTRONG Survey for People Affected by Cancer. The survey was designed to assess the physical, emotional, and practical concerns after cancer as well as receipt of treatment summaries. Participants were recruited online and through national partners. RESULTS: Over a 9-month period, > 12,000 people completed the survey, including 3,682 post-treatment cancer survivors (PTCSs). PTCSs who received a TS reported that they were closer to time since diagnosis or end of treatment (P < .01), more likely to have received chemotherapy (P < .01), more likely to have received the majority of their health care from a medical oncologist (P < .05), experiencing significantly fewer post-treatment emotional concerns (P < .05), and significantly less likely to say that they had learned to live with their concerns (P < .05). PTCSs who received a TS more often reported that their needs had been met, including receiving information about possible late effects, care they received during treatment, and care they received after treatment. CONCLUSIONS: Receipt of a TS was associated with a variety of positive outcomes; however, only approximately one third of PTCSs received one. Future studies focused on patient perspectives on care planning tools can help to improve optimal survivorship care delivery. Possible solutions for improving access to a TS are included.

Perspectives of postmenopausal breast cancer survivors on adjuvant endocrine therapy-related symptoms.

PURPOSE/OBJECTIVES: To conduct an investigation of women's experiences related to adjuvant endocrine therapy (AET) and managing AET-related symptoms. RESEARCH APPROACH: Qualitative, focus group design. SETTING: Main campus of the University of Pittsburgh in Pennsylvania. PARTICIPANTS: 14 breast cancer survivors, aged 50 years or older, with AET-related symptoms. METHODOLOGIC APPROACH: Semistructured discussion guides were used to elicit recollections of conversations with healthcare providers about starting AET, symptom experiences, symptom management, and suggestions for improving management. Audiotaped discussions were transcribed and analyzed to identify themes. FINDINGS: Women reported that, initially, AET was not viewed as a choice, but rather as the necessary next step to save their lives. After starting AET, women experienced difficulties making sense of, communicating about, and managing unanticipated AET-related symptoms. Women who experienced persistently bothersome symptoms began weighing the pros and cons of AET to decide whether to continue treatment. CONCLUSIONS: Focus group findings suggest multiple opportunities to better prepare patients for AET and to improve assessment and management of AET-related symptoms. INTERPRETATION: By exploring AET-related symptom experiences, nurses may be able to promote AET adherence in breast cancer survivors.

Health information needs and health-related quality of life in a diverse population of long-term cancer survivors.

OBJECTIVE: To investigate health information needs and their association with health-related quality of life (HRQOL) in a diverse, population-based sample of long-term cancer survivors. METHODS: We analyzed health information needs from 1197 cancer survivors 4-14 years post-diagnosis drawn from two cancer registries in California. Multivariable regression models were used to identify factors associated with endorsement of total number and different categories of needs. The relationship between number of needs and HRQOL and effect modification by confidence for obtaining information was examined. RESULTS: Survivors reported a high prevalence of unmet information needs in the following categories: side effects & symptoms: 75.8%; tests & treatment: 71.5%; health promotion: 64.5%; interpersonal & emotional: 60.2%; insurance: 39.0%; and sexual functioning & fertility: 34.6%. Survivors who were younger, non-White, and did not receive but wanted a written treatment summary reported a higher number of needs. Number of information needs was inversely related to mental well-being, particularly for those with low confidence for obtaining information (P<0.05). CONCLUSION: These patterns suggest disparities in access to important health information in long-term survivors and that affect HRQOL. PRACTICE IMPLICATIONS: Findings suggest a need for tailored interventions to equip survivors with comprehensive health information and to bolster skills for obtaining information.

What Do People Affected by Cancer Think About Electronic Health Information Exchange? Results From the 2010 LIVESTRONG Electronic Health Information Exchange Survey and the 2008 Health Information National Trends Survey.

PURPOSE: The Health Information Technology for Economic and Clinical Health (HITECH) Act has placed an emphasis on electronic health information exchange (EHIE). Research on needs of patient, especially those touched by cancer, has been sparse. Here, we present data on preferences for EHIE among those touched by cancer compared with a nationally representative sample of American adults. METHODS: TWO SURVEYS WERE USED: an online survey designed by LIVESTRONG (the Lance Armstrong Foundation) and a dual-frame, nationally representative sample of adults collected through the National Cancer Institute's Health Information National Trends Survey (HINTS). RESULTS: The LIVESTRONG EHIE survey yielded a sample of 8,411 respondents, including 433 currently receiving cancer treatment, 298 living with cancer as a chronic disease, 2,343 post-treatment survivors, and 5,337 with no history of cancer. The HINTS sample consisted of 7,674 respondents representative of the general adult population. Comparisons revealed a strong positive view of the value of EHIE within the cancer-relevant groups, especially among those living with cancer as a chronic disease. Only about half of the general population showed a similar degree of enthusiasm for EHIE. When asked about specific functions for EHRs, respondents valued privacy and security above all, followed by improving care coordination and data sharing between providers. CONCLUSION: These data suggest that the EHIE needs among those touched by cancer may be greater than in the general population. This is particularly important because people affected by cancer are among those who access our health care system most frequently and who have the most at stake.

Non-Hodgkin's lymphoma survivors' fertility and sexual function-related information needs.

This population-based study assessed information needs related to fertility and sexual function in 250 non-Hodgkin's lymphoma survivors from a Los Angeles Surveillance, Epidemiology, and End Results cancer registry 2-5 years after diagnosis. Results suggest that many survivors have persistent fertility and sexual concerns 2-5 years after diagnosis, highlighting the importance of oncologists working collaboratively with reproductive endocrinologists to uniformly inform patients about these issues during routine follow-up cancer care visits.