Ann S. Hamilton

Long-Term Functional Outcomes after Treatment for Localized Prostate Cancer

BACKGROUND The purpose of this analysis was to compare long-term urinary, bowel, and sexual function after radical prostatectomy or external-beam radiation therapy. METHODS The Prostate Cancer Outcomes Study (PCOS) enrolled 3533 men in whom prostate cancer had been diagnosed in 1994 or 1995. The current cohort comprised 1655 men in whom localized prostate cancer had been diagnosed between the ages of 55 and 74 years and who had undergone either surgery (1164 men) or radiotherapy (491 men). Functional status was assessed at baseline and at 2, 5, and 15 years after diagnosis. We used multivariable propensity scoring to compare functional outcomes according to treatment. RESULTS Patients undergoing prostatectomy were more likely to have urinary incontinence than were those undergoing radiotherapy at 2 years (odds ratio, 6.22; 95% confidence interval [CI], 1.92 to 20.29) and 5 years (odds ratio, 5.10; 95% CI, 2.29 to 11.36). However, no significant between-group difference in the odds of urinary incontinence was noted at 15 years. Similarly, although patients undergoing prostatectomy were more likely to have erectile dysfunction at 2 years (odds ratio, 3.46; 95% CI, 1.93 to 6.17) and 5 years (odds ratio, 1.96; 95% CI, 1.05 to 3.63), no significant between-group difference was noted at 15 years. Patients undergoing prostatectomy were less likely to have bowel urgency at 2 years (odds ratio, 0.39; 95% CI, 0.22 to 0.68) and 5 years (odds ratio, 0.47; 95% CI, 0.26 to 0.84), again with no significant between-group difference in the odds of bowel urgency at 15 years. CONCLUSIONS At 15 years, no significant relative differences in disease-specific functional outcomes were observed among men undergoing prostatectomy or radiotherapy. Nonetheless, men treated for localized prostate cancer commonly had declines in all functional domains during 15 years of follow-up. (Funded by the National Cancer Institute.).

Concordance for Hodgkin's disease in identical twins suggesting genetic susceptibility to the young-adult form of the disease

BACKGROUND Relatives of young adults with Hodgkins disease are at increased risk of Hodgkins disease, and lines of evidence implicate both inheritance and environment. METHODS We have identified and followed 432 sets of twins affected by Hodgkins disease. The number of cases of Hodgkins disease observed before the age of 50 years in the healthy monozygotic and dizygotic twins of the patients with Hodgkins disease was compared with the number expected from national age-specific incidence rates. RESULTS None of the 187 pairs of dizygotic twins became concordant for Hodgkins disease, whereas 10 of the 179 pairs of monozygotic twins did; in 5 of these pairs, the second case appeared after the original ascertainment. During the observation period, 0.1 (monozygotic) and 0.1 (dizygotic) cases in the unaffected twins were expected. Monozygotic twins of patients with Hodgkins disease thus had a greatly increased risk (standardized incidence ratio, 99; 95 percent confidence interval, 48 to 182), whereas no increase in the risk for dizygotic twins of patients with Hodgkins was observed. CONCLUSIONS Genetic susceptibility underlies Hodgkins disease in young adulthood.

Surgeon recommendations and receipt of mastectomy for treatment of breast cancer

CONTEXT There is concern that mastectomy is overused in the United States. OBJECTIVES To evaluate the association of patient-reported initial recommendations by surgeons and those given when a second opinion was sought with receipt of initial mastectomy; and to assess the use of mastectomy after attempted breast-conserving surgery (BCS). DESIGN, SETTING, AND PATIENTS A survey of women aged 20 to 79 years with intraductal or stage I and II breast cancer diagnosed between June 2005 and February 2007 and reported to the National Cancer Institutes Surveillance, Epidemiology, and End Results registries for the metropolitan areas of Los Angeles, California, and Detroit, Michigan. Patients were identified using rapid case ascertainment, and Latinas and blacks were oversampled. Of 3133 patients sent surveys, 2290 responded (73.1%). A mailed survey was completed by 96.5% of respondents and 3.5% completed a telephone survey. The final sample included 1984 female patients (502 Latinas, 529 blacks, and 953 non-Hispanic white or other). MAIN OUTCOME MEASURES The rate of initial mastectomy and the perceived reason for its use (surgeon recommendation, patient driven, medical contraindication) and the rate of mastectomy after attempted BCS. RESULTS Of the 1984 patients, 1468 had BCS as an initial surgical therapy (75.4%) and 460 had initial mastectomy, including 13.4% following surgeon recommendation and 8.8% based on patient preference. Approximately 20% of patients (n = 378) sought a second opinion; this was more common for those patients advised by their initial surgeon to undergo mastectomy (33.4%) than for those advised to have BCS (15.6%) or for those not receiving a recommendation for one procedure over another (21.2%) (P < .001). Discordance in treatment recommendations between surgeons occurred in 12.1% (n = 43) of second opinions and did not differ on the basis of patient race/ethnicity, education, or geographic site. Among the 1459 women for whom BCS was attempted, additional surgery was required in 37.9% of patients, including 358 with reexcision (26.0%) and 167 with mastectomy (11.9%). Mastectomy was most common in patients with stage II cancer (P < .001). CONCLUSION Breast-conserving surgery was recommended by surgeons and attempted in the majority of patients evaluated, with surgeon recommendation, patient decision, and failure of BCS all contributing to the mastectomy rate.

Health-Related Quality of Life of Adolescent and Young Adult Patients With Cancer in the United States: The Adolescent and Young Adult Health Outcomes and Patient Experience Study

PURPOSE Adolescents and young adults (AYAs) diagnosed with cancer face numerous physical, psychosocial, and practical challenges. This article describes the health-related quality of life (HRQOL) and associated demographic and health-related characteristics of this developmentally diverse population. PATIENTS AND METHODS Data are from the Adolescent and Young Adult Health Outcomes and Patient Experience (AYA HOPE) study, a population-based cohort of 523 AYA patients with cancer, ages 15 to 39 years at diagnosis from 2007 to 2009. Comparisons are made by age group and with general and healthy populations. Multiple linear regression models evaluated effects of demographic, disease, health care, and symptom variables on multiple domains of HRQOL using the Pediatric Quality of Life Inventory (PedsQL) and the Short-Form Health Survey 12 (SF-12). RESULTS Overall, respondents reported significantly worse HRQOL across both physical and mental health scales than did general and healthy populations. The greatest deficits were in limitations to physical and emotional roles, physical and social functioning, and fatigue. Teenaged patients (ages 15 to 17 years) reported worse physical and work/school functioning than patients 18 to 25 years old. Regression models showed that HRQOL was worse for those in treatment, with current/recent symptoms, or lacking health insurance at any time since diagnosis. In addition, sarcoma patients, Hispanic patients, and those with high school or lower education reported worse physical health. Unmarried patients reported worse mental health. CONCLUSION Results suggest that AYAs with cancer have major decrements in several physical and mental HRQOL domains. Vulnerable subgroups included Hispanic patients, those with less education, and those without health insurance. AYAs also experienced higher levels of fatigue that were influenced by current symptoms and treatment. Future research should explore ways to address poor functioning in this understudied group.

Health Outcomes After External-Beam Radiation Therapy for Clinically Localized Prostate Cancer: Results From the Prostate Cancer Outcomes Study

PURPOSE Studies reporting effects of radiotherapy for prostate cancer on sexual, bowel, and urinary function have been conducted primarily in referral centers or academic institutions. Effects of external-beam radiotherapy for prostate cancer among a population-based cohort were assessed. PATIENTS AND METHODS The study population included 497 white, Hispanic, and African-American men with localized prostate cancer from six US cancer registries who were diagnosed between October 1, 1994, and October 31, 1995, and treated initially with external-beam radiotherapy. They were interviewed at regular intervals, and medical records were reviewed. Distributions of responses for bowel-, urinary-, and sexual-related functions at 6, 12, and 24 months after diagnosis and adjusted mean composite change scores for each domain were analyzed. RESULTS Declines of 28.9% in the sexual function score and 5.4% in the bowel function score occurred by 24 months, whereas at this time, the urinary function score was relatively unchanged. A total of 43% of those who were potent before diagnosis became impotent after 24 months. More than two thirds of the men were satisfied with their treatment and would make the same decision again. CONCLUSION Sexual function was the most adversely affected quality-of-life domain, with problems continuing to increase between 12 and 24 months. Bowel function problems increased at 6 months, with partial resolution observed by 24 months. Despite the side effects, satisfaction with therapy was high. These results are representative of men in community practice settings and may be of assistance to men and to clinicians when making treatment decisions.

Underascertainment of radiotherapy receipt in Surveillance, Epidemiology, and End Results registry data.

Surveillance, Epidemiology, and End Results (SEER) registry data have been used to suggest underuse and disparities in receipt of radiotherapy. Prior studies have cautioned that SEER may underascertain radiotherapy but lacked adequate representation to assess whether underascertainment varies by geography or patient sociodemographic characteristics. The authors sought to determine rates and correlates of underascertainment of radiotherapy in recent SEER data.

Effect of Age, Tumor Risk, and Comorbidity on Competing Risks for Survival in a U.S. Population–Based Cohort of Men With Prostate Cancer

BACKGROUND Accurate estimation of life expectancy is essential to offering appropriate care to men with early-stage prostate cancer, but mortality risks associated with comorbidity are poorly defined. OBJECTIVE To determine the effect of age, comorbidity, and tumor risk on other-cause and prostate cancer-specific mortality in men with early-stage disease. DESIGN Prospective cohort study. SETTING A nationally representative, population-based cohort. PATIENTS 3183 men with nonmetastatic prostate cancer at diagnosis. MEASUREMENTS Baseline self-reported comorbidity (scored as a count of 12 major comorbid conditions), tumor characteristics, initial treatment, and overall and disease-specific mortality through 14 years of follow-up. Survival analyses that accounted for competing risks were performed. RESULTS Fourteen-year cumulative other-cause mortality rates were 24%, 33%, 46%, and 57% for men with 0, 1, 2, and 3 or more comorbid conditions, respectively. For men diagnosed at age 65 years, subhazard ratios for other-cause mortality among those with 1, 2, or 3 or more comorbid conditions (vs. none) were 1.2 (95% CI, 1.0 to 1.4), 1.7 (CI, 1.4 to 2.0), and 2.4 (CI, 2.0 to 2.8), respectively. Among men with 3 or more comorbid conditions, 10-year other-cause mortality rates were 26%, 40%, and 71% for those aged 60 years or younger, 61 to 74 years, and 75 years or older at diagnosis, respectively. Prostate cancer-specific mortality was minimal in patients with low-risk (3%) and intermediate-risk (7%) disease but appreciable in those with high-risk disease (18%) and did not vary by number of comorbid conditions (10% to 11% in all groups). LIMITATION Comorbid conditions were self-reported. CONCLUSION Older men with multiple major comorbid conditions are at high risk for other-cause mortality within 10 years of diagnosis and should consider this information when deciding between conservative management and aggressive treatment for low- or intermediate-risk prostate cancer. PRIMARY FUNDING SOURCE National Cancer Institute.

Differential twin concordance for multiple sclerosis by latitude of birthplace

To address the inconsistency in the reported concordance of multiple sclerosis (MS) among twins by zygosity, sex, and latitude.

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.

Latina patient perspectives about informed treatment decision making for breast cancer

OBJECTIVE To evaluate Latina breast cancer patient perspectives regarding informed decision making related to surgical treatment decision making for breast cancer. METHODS 2030 women with non-metastatic breast cancer diagnosed from 8/05 to 5/06 and reported to the Los Angeles metropolitan SEER registries were mailed a survey shortly after surgical treatment. Latina and African-American women were over-sampled. We conducted regression of four decision outcome to evaluate associations between race/ethnicity, demographic and clinical factors, and mechanistic variables (i.e., health literacy) and decision outcomes. RESULTS Our analytic sample was 877 women: 24.5% Latina-Spanish speaking (Latina-SP), 20.5% Latina-English speaking, 24% African-American and 26.6% Caucasian. Approximately 28% of women in each ethnic group reported a surgeon-based, 36% a shared, and 36% a patient-based surgery decision. Spanish-preferent Latina women had the greatest odds of high decision dissatisfaction and regret controlling for other factors (OR 5.5, 95% CI: 2.9, 10.5 and OR 4.1, 95% CI: 2.2, 8.0, respectively). Low health literacy was independently associated with dissatisfaction and regret (OR 5.6, 95% CI: 2.9, 11.1 and OR 3.5, 95% CI 1.8, 7.1, respectively) and slightly attenuated associations between Latina-SP ethnicity and decision outcomes. CONCLUSION Despite similar clinical outcomes, patients report very different experiences with treatment decision making. Latina women, especially those who prefer Spanish, are vulnerable to poor breast cancer treatment decision outcomes. PRACTICE IMPLICATIONS Providers need to be aware of the role of ethnicity, acculturation and literacy in breast cancer treatment discussions.