Survivorship Care Plan Information Needs: Perspectives of Safety-Net Breast Cancer Patients.

PURPOSE: Despite the Institute of Medicine's (IOM) 2005 recommendation, few care organizations have instituted standard survivorship care plans (SCPs). Low health literacy and low English proficiency are important factors to consider in SCP development. Our study aimed to identify information needs and survivorship care plan preferences of low literacy, multi-lingual patients to support the transition from oncology to primary care and ongoing learning in survivorship. METHODS: We conducted focus groups in five languages with African American, Latina, Russian, Filipina, White, and Chinese medically underserved breast cancer patients. Topics explored included the transition to primary care, access to information, knowledge of treatment history, and perspectives on SCPs. RESULTS: Analysis of focus group data identified three themes: 1) the need for information and education on the transition between "active treatment" and "survivorship"; 2) information needed (and often not obtained) from providers; and 3) perspectives on SCP content and delivery. CONCLUSIONS: Our data point to the need to develop a process as well as written information for medically underserved breast cancer patients. An SCP document will not replace direct communication with providers about treatment, symptom management and transition, a communication that is missing in participating safety-net patients' experiences of cancer care. Women turned to peer support and community-based organizations in the absence of information from providers. IMPLICATIONS FOR CANCER SURVIVORS: "Clear and effective" communication of survivorship care for safety-net patients requires dedicated staff trained to address wide-ranging information needs and uncertainties.

Quality of life of younger breast cancer survivors: persistence of problems and sense of well-being.

OBJECTIVE: Ten years after diagnosis, women diagnosed with breast cancer at age 50 or younger were assessed to determine whether quality of life (QOL) problems found at five years persisted. We predicted that QOL in the physical and social domains would be poorer, but improvements would be found in the psychological domain. METHODS: We re-interviewed 312 women, who had been interviewed at their five year anniversary and remained cancer free, on their QOL in three domains (physical, social, and psychological). Comparisons between their 5- and 10-year reports were performed using paired t-tests for numeric variables and McNemar's test for categorical variables. Multiple regression analysis was used to model change from 5 to 10 years in each QOL domain, given the level of QOL at 5 years. RESULTS: The women's mean age was 55, 60% were college graduates, 79% had a partner, and 27% were non-Euro-American. Ten years after diagnosis they reported poorer general health (p<0.0001) and physical well-being (p = 0.001), less sexual activity (p = 0.009), and more chronic conditions (p<0.0001) than at 5 years. Relationships were found between: (1) the number of chronic conditions at 5 years and decreased physical, social, and psychological well-being at 10 years; and (2) a smaller social network at 5 years and poorer social functioning at 10 years. CONCLUSIONS: Certain aspects of both physical and social QOL worsened over time. The remaining question is whether these changes can be attributed to the late effects of treatment or to normal effects of aging.

Addressing the needs of young breast cancer survivors at the 5 year milestone: can a short-term, low intensity intervention produce change?

BACKGROUND: Today, the 5-year relative survival rate for cancer is 65% and there are 10.5 million survivors. The largest group of survivors are those of breast cancer. Reductions in mortality are occurring at a greater rate for women under age 50 at diagnosis than among older women. AIMS: Our goal was to design a socio-educational intervention for 5-year survivors aged 50 or younger at diagnosis and test the hypotheses that women in the intervention group would show greater improvement than controls with respect to (1) knowledge of breast cancer, its treatment, and long-term health concerns; (2) lifestyle habits (i.e., exercise and diet); and (3) communication with family and physicians. METHODS: Using a randomized controlled trial with a pre-post design, 404 women who were 5 years from diagnosis and cancer-free (response rate 54%) were randomly assigned to an intervention or delayed intervention (control) group and were assessed at pre-test (baseline) and 6 months later (96% retention). The intervention consisted of three 6-h workshops over a 3 month period. Four series of workshops were held at different geographical areas in the greater San Francisco Bay Area. The workshops included activities and information to promote physical, social, emotional, and spiritual well-being. The intervention design was based on findings from focus groups and a survey of 185 cancer-free 5-year survivors that assessed changes since the early months after diagnosis in physical, social, emotional, and spiritual concerns (response rate 73%). RESULTS: Consistent with our first hypothesis, at post-test, women in the intervention group, on average, had greater knowledge regarding breast cancer, its treatment, and their own future health than did those in the control group (p = 0.015). Hypothesis 2 was partially supported as women in the intervention group were more likely than the control group to report an increased amount of physical activity (p = 0.036), but not significant dietary changes. Social support was related to increased self report of physical activity. With the exception of the last series of workshops, the intervention group did not report improved communications with family, friends, and physicians (hypothesis 3). CONCLUSIONS: A short-term intervention can affect knowledge levels and physical activity but not diet or communication in the family. IMPLICATIONS FOR CANCER SURVIVORS: The intervention was related to greater knowledge related to breast cancer, and increased report of physical activity. The program was not related to changes in reported diet or family communication.

Family history, perceived risk, and prostate cancer screening among African American men.

BACKGROUND: Many African American men have two major risk factors for prostate cancer. By ethnicity alone, they have twice the risk of Euro-American men of developing prostate cancer. Having a family history (brother or father with prostate cancer) also doubles their risk. The major hypotheses tested in this study are that men with a family history perceive their risk to be higher, are more worried about getting prostate cancer, and are more likely to have used cancer screening tests than men without such a history. METHODS: A sample of 208 African American men, ages 40 to 74 years, were recruited through relatives or friends whose prostate cancer diagnosis was reported to the California Cancer Registry during the years 1997 to 2001 and from churches and African American social groups. Following a screening interview to determine eligibility, 88 men with self-reported, first-degree family history of prostate cancer and 120 without such history were interviewed by telephone. Logistic regression was used to create models of perceived risk, prostate cancer worries, receipt of a digital rectal exam, and/or prostate-specific antigen (PSA) testing. RESULTS: Men with a self-reported family history of prostate cancer did not perceive their risk as higher than men without a family history, nor did they report more cancer worries. They were more likely to report having a recent PSA test, but not a digital rectal exam. Having a higher than average perceived risk was associated with younger age, a college education, and lower mental well-being, and reporting more prostate cancer worries and being more likely to have had a recent PSA test. CONCLUSIONS: Although there continues to be controversy about PSA testing, these data suggest that African American men at above-average risk are inclined to be screened.

Body image and sexual problems in young women with breast cancer.

PURPOSE: The purpose of this study was to determine the frequency of body image and sexual problems in the first months after treatment among women diagnosed with breast cancer at age 50 or younger. BACKGROUND: Breast cancer treatment may have severe effects on the bodies of younger women. Surgical treatment may be disfiguring, chemotherapy may cause abrupt menopause, and hormone replacement is not recommended. METHODS: A multi-ethnic population-based sample of 549 women aged 22-50 who were married or in a stable unmarried relationship were interviewed within seven months of diagnosis with in situ, local, or regional breast cancer. RESULTS: Body image and sexual problems were experienced by a substantial proportion of women in the early months after diagnosis. Half of the 546 women experienced two or more body image problems some of the time (33%), or at least one problem much of the time (17%). Among sexually active women, greater body image problems were associated with mastectomy and possible reconstruction, hair loss from chemotherapy, concern with weight gain or loss, poorer mental health, lower self-esteem, and partner's difficulty understanding one's feelings. Among the 360 sexually active women, half (52%) reported having a little problem in two or more areas of sexual functioning (24%), or a definite or serious problem in at least one area (28%). Greater sexual problems were associated with vaginal dryness, poorer mental health, being married, partner's difficulty understanding one's feelings, and more body image problems, and there were significant ethnic differences in reported severity. CONCLUSIONS: Difficulties related to sexuality and sexual functioning were common and occurred soon after surgical and adjuvant treatment. Addressing these problems is essential to improve the quality of life of young women with breast cancer.

Progress in the pipeline: replication of the minority training program in cancer control research.

BACKGROUND: This paper evaluates the replicability of an NCI-funded didactic/experiential program to increase the diversity of doctorally-prepared cancer disparities investigators. METHODS: The program was developed and operated successfully for three years in Northern California when a replication was established at UCLA. Feasibility, process, impact, and outcome measures on UCSF and UCLA summer-institute participants were compared. RESULTS: Average participant rankings of the influence of the program on intention to apply for a doctorate were 9.1/10 (UCSF) and 8.6/10 (UCLA). A total of 22.5% of UCSF and 10% of UCLA participants have enrolled in, been accepted by, or completed doctoral programs. Among these alumni, 68% (21/31) of UCSF and 60% (3/5) of UCLA participants plan to conduct their doctoral research in cancer control. CONCLUSIONS: This program has been successfully replicated and has met its objective to increase the pipeline of ethnically diverse doctoral-level public health researchers. Expansion of the program to other regions of the US is feasible and indicated.

Then and now: quality of life of young breast cancer survivors.

BACKGROUND: Women under age 50, a quarter of all cases of breast cancer, are especially vulnerable to physical and psychosocial late effects of their treatment due to having more aggressive treatment and their relative youth. METHODS: In person interviews were conducted with the population-based sample: 185 women who were under 50 at diagnosis and were cancer-free 5 years later. Quality of life in the physical, psychological, social, and spiritual domains was assessed and compared with results obtained a few months after diagnosis. RESULTS: Five years after diagnosis, 92% rated their health as good or excellent, and only 10% said their health had been getting worse. Between baseline and 5 years, there were significant improvements in surgical symptoms, body image, worry about the future, patient-physician communication, intrusiveness of treatment, and all of the SF-36 measures except for general health. There were significant decreases in emotional support and the size of one's social network. More women were now menopausal (75% due to treatment) and there were fewer children at home. There were no significant changes in employment status, marital/partner status, sexual activity, sexual problems, self-esteem, and attendance at religious services or frequency of prayer. In multivariate models, a greater increase in physical quality of life was associated with reporting fewer chronic conditions, being employed, having been treated by chemotherapy and fewer had no children under age 18 living at home. A greater increase in mental quality of life was associated with fewer chronic conditions and a smaller decrease in emotional support. CONCLUSIONS: Five years after diagnosis, young breast cancer survivors who remained cancer-free enjoyed good health and improved quality of life. Nonetheless, physical, social, and psychological concerns must be addressed so that young breast cancer survivors will continue to be resilient as they age.

Increasing ethnic diversity in cancer control research: description and impact of a model training program.

BACKGROUND: There is little ethnic diversity at the doctoral level among researchers in cancer control. The Minority Training Program in Cancer Control Research is designed to encourage underrepresented master's level health science students to pursue doctoral training and careers in research. METHODS: Program components include an annual 5-day summer institute, internships, and doctoral incentive awards. Intention to pursue doctoral training is measured before and after participation. Doctoral applications and enrollment are tracked through annual surveys. RESULTS: Seventy students participated during the first three years, 1999-2001. Intention to apply increased significantly for each class (year one, p %lt; 0.001; year two, p = 0.042; year three, p = 0.006). Thirty-one percent of participants have either enrolled in doctoral programs (n= 10) or report plans to apply in the next one to two years (n = 9). Over half of these students indicated that the MTPCCR had a positive influence on their plans. CONCLUSIONS: A targeted training program encourages under-represented students to pursue doctoral degrees and thus has the potential to increase ethnic diversity in public health research.