Michele M. West

Adult cancer survivors: how are they faring?

This study identified the psychosocial problems that 752 patients from 3 states who had been diagnosed with 1 of the 10 most commonly occurring cancers indicated concerned them the most. Approximately 1 year after being diagnosed with cancer, 68.1% of patients were concerned with their illness returning, and more than half were concerned with developing a disease recurrence (59.8%) or had fears regarding the future (57.7%). In addition to these psychological problems focused on fear, approximately two‐thirds (67.1%) of patients were concerned about a physical health problem, fatigue, and loss of strength. Two other physical health problems that concerned more than two‐fifths of patients were sleep difficulties (47.9%) and sexual dysfunction (41.2%). More problems were reported by younger survivors (ages 18–54 yrs), women, nonwhites, those who were not married, and those with a household income of less than

Racial differences in breast carcinoma survival.

20,000 a year. Those patients currently in treatment for cancer reported on average significantly more problems (P < 0.001) and on average had a higher Cancer Problems in Living Scale (CPILS) total score (P < 0.001) compared with those not currently in treatment. In a comparison of respondents with one of the four most common cancers, the most concerns regarding problems in living and highest mean CPILS scores were reported by those diagnosed with lung cancer, followed by survivors of breast cancer, colorectal cancer, and prostate cancer. Cancer 2005.

Analyzing Geographic Patterns of Disease Incidence: Rates of Late-Stage Colorectal Cancer in Iowa

Survival after breast carcinoma diagnosis is significantly worse among African American women for reasons unknown. The purpose of this study was to update reports on the National Surveillance, Epidemiology, and End Results Program and to examine the effect of race on breast carcinoma survival.

Unmet Support Service Needs and Health-Related Quality of Life among Adolescents and Young Adults with Cancer: The AYA HOPE Study.

This study, using geocodes of the locations of residence of newly diagnosed colorectal cancer patients from the Iowa Cancer Registry, computed continuous spatial patterns of late-stage rates of colorectal cancer in Iowa. Variations in rates in intrahospital service regions were as great as interhospital service regions, shown by analysis of variance tests. Some of the spatial variations observed could be explained, using a general linear regression model on individual-level data, by spatial variations in attributes of individuals and their relationships to health resources. We show how this source of variation can be removed from the original map leaving a new map showing the remaining variation in late-stage rate not explained by these relationships. We argue that it would be more appropriate to organize prevention and control activities targeted at the areas with higher than expected late-stage rates shown on this map. The originality of this approach is in the integration of geocoded data from a cancer registry with methods of spatial analysis that provide considerable geographic detail in the cancer rate while controlling for rate stabilization and reliability due to the small number problem.

Geocoding Health Data : The Use of Geographic Codes in Cancer Prevention and Control, Research and Practice

Introduction: Cancer for adolescents and young adults (AYA) differs from younger and older patients; AYA face medical challenges while navigating social and developmental transitions. Research suggests that these patients are under or inadequately served by current support services, which may affect health-related quality of life (HRQOL). Methods: We examined unmet service needs and HRQOL in the National Cancer Institute’s Adolescent and Young Adult Health Outcomes and Patient Experience (AYA HOPE) study, a population-based cohort (n = 484), age 15–39, diagnosed with cancer 6–14 months prior, in 2007–2009. Unmet service needs were psychosocial, physical, spiritual, and financial services where respondents endorsed that they needed, but did not receive, a listed service. Linear regression models tested associations between any or specific unmet service needs and HRQOL, adjusting for demographic, medical, and health insurance variables. Results: Over one-third of respondents reported at least one unmet service need. The most common were financial (16%), mental health (15%), and support group (14%) services. Adjusted models showed that having any unmet service need was associated with worse overall HRQOL, fatigue, physical, emotional, social, and school/work functioning, and mental health (p’s < 0.0001). Specific unmet services were related to particular outcomes [e.g., needing pain management was associated with worse overall HRQOL, physical and social functioning (p’s < 0.001)]. Needing mental health services had the strongest associations with worse HRQOL outcomes; needing physical/occupational therapy was most consistently associated with poorer functioning across domains. Discussion: Unmet service needs in AYAs recently diagnosed with cancer are associated with worse HRQOL. Research should examine developmentally appropriate, relevant practices to improve access to services demonstrated to adversely impact HRQOL, particularly physical therapy and mental health services.

Use of Appropriate Initial Treatment Among Adolescents and Young Adults With Cancer

Introduction Geocoding Methods, Materials, and First Steps toward a Geocoding Error Budget M.P. Armstrong and C. Tiwari Using ZIP codes as Geocodes in Cancer Research K.M.M. Beyer, A.F. Schultz, and Z. Chen Producing Spatially Continuous Prostate Cancer Maps with Different Geocodes and Spatial Filter Methods G. Rushton, Q. Cai, and Z. Chen The Science and Art of Geocoding: Tips for Improving Match Rates and Handling Unmatched Cases in Analysis F. Boscoe Geocoding Practices in Cancer Registries T. Abe and D. Stinchcomb Alternative Techniques for Masking Geographic Detail to Protect Privacy D.L. Zimmerman, M.P. Armstrong, and Gerard Rushton Preserving Privacy: Deidentifying Data by Applying a Random Perturbation Spatial Mask Z. Chen, G. Rushton, and G. Smith Spatial Statistical Analysis of Point- and Area-Reference Public Health Data L.A. Waller Statistical methods for Incompletely and Incorrectly Geocoded Cancer Data D. L. Zimmerman Using Geocodes to estimate Distances and geographic Accessibility for Cancer Prevention and Control M. Armstrong, B. Greene, and G. Rushton Cancer Registry Data and Geocoding: Privacy, Confidentiality, and Security Issues J. Gittler Conclusions Appendix: Cancer Reporting and Registry Statutes and Regulations J. Gittler

Prevalence of Prostate Specific Antigen Testing for Prostate Cancer in Elderly Men

BACKGROUND There has been little improvement in the survival of adolescent and young adult (AYA) cancer patients aged 15 to 39 years relative to other age groups, raising the question of whether such patients receive appropriate initial treatment. METHODS We examined receipt of initial cancer treatment for a population-based sample of 504 AYAs diagnosed in 2007-2008 with acute lymphoblastic leukemia (ALL), Hodgkins or non-Hodgkins lymphoma, germ cell cancer, or sarcoma. Registry data, patient surveys, and detailed medical record reviews were used to evaluate the association of patient demographic, socioeconomic, and health care setting characteristics with receipt of appropriate initial treatment, which was defined by clinical specialists in AYA oncology based on adult guidelines and published literature available before 2009 and analyzed with multivariable logistic regression. All statistical tests were two-sided. RESULTS Approximately 75% of AYA cancer patients in our sample received appropriate treatment, 68% after excluding stage I male germ cell patients who all received appropriate treatment. After this exclusion, appropriate treatment ranged from 79% of sarcoma patients to 56% of ALL patients. Cancer type (P < .01) and clinical trial participation (P = .04) were statistically significantly associated with appropriate treatment in multivariable analyses. Patients enrolled in clinical trials were more likely to receive appropriate therapy relative to those not enrolled (78% vs 67%, adjusted odds ratio = 2.6, 95% confidence interval = 1.1 to 6.4). CONCLUSIONS Except for those with early stage male germ cell tumors, approximately 30% (or 3 in 10) AYA cancer patients did not receive appropriate therapy. Further investigation is required to understand the reasons for this potential shortfall in care delivery.

Knowledge of Clinical Trial Availability and Reasons for Nonparticipation Among Adolescent and Young Adult Cancer Patients: A Population-based Study

PURPOSE We investigated the prevalence and outcome of PSA testing for prostate cancer screening or diagnosis in elderly men 75 years or older at our academic medical center. MATERIALS AND METHODS A cross-sectional study design was used to identify all men 75 years or older who underwent a PSA test through the family medicine or internal medicine service at our institution between January 1, 1998 and June 30, 2004. All patients with a suspected (PSA less than 0.1 ng/ml) or confirmed prior diagnosis of prostate cancer were excluded. The prevalence of PSA testing was then compared to that in younger age groups (45 to 54, 55 to 64 and 65 to 74 years). We then examined the frequency and nature of further evaluation and treatment performed in men following the PSA test. RESULTS The 8,787 male patients who were 75 years or older generated a total of 82,672 visits in the 5.5-year period. Of these patients 505 (5.7%) underwent at least 1 PSA test. The prevalence of PSA testing in the younger age groups was 10.3% (1,769 of 17,175) in patients 45 to 54 years old, 14.9% (2,052 of 13,772) in those 55 to 64 years old and 11.8% (1,258 of 10,661) in those 65 to 74 years old (chi-square test p <0.001). Of these patients 98 of 343 (28.6%) with PSA between 0.1 and 4 ng/ml were referred to a urologist at our institution and 3 underwent biopsy. None had a prostate cancer diagnosis. Of the 162 patients with PSA more than 4 ng/ml 84 (51.9%) were referred to a urologist. Only 10 of the 84 patients (11.9%) who were referred to a urologist underwent prostate biopsy. Six of the 10 men (60%) were diagnosed with prostate cancer, including 1 with a Gleason 6 tumor, 1 with a Gleason 7 tumor and 4 who were found to have tumors with a Gleason score of 8 or greater. All patients received androgen deprivation therapy, except 1 who received local external beam radiation therapy. An additional patient was diagnosed by biopsy of a vertebral lesion and he received hormone therapy. At a median followup of 51 months (range 28 to 72) 4 of 7 men (57%) were alive with disease. CONCLUSIONS PSA testing for prostate cancer screening and diagnosis appear to decrease with advancing age. A small but significant proportion of men who are 75 years or older continue to undergo PSA testing. Abnormal PSA results do not always result in further evaluation and therapy for prostate cancer in elderly men. The establishment of firm guideline recommendations regarding PSA testing and further evaluation for prostate cancer in elderly men, perhaps based on individualized geriatric assessment, may be helpful.

Geocoding in Cancer Research: A Review

Purpose of the Study: Adolescent and young adult (AYA) cancer patients are underrepresented in clinical trials, but the reasons for this phenomenon are unknown. Patients And Methods: Questionnaire and medical record data from 515 AYA cancer patients (21 acute lymphocytic leukemia [ALL], 201 germ cell tumor, 141 Hodgkin lymphoma, 128 non-Hodgkin lymphoma, 24 sarcoma) from a population-based study were analyzed. We used multivariable models to determine characteristics associated with patient knowledge of the availability of clinical trials for their cancer. Reasons for not participating in a trial were tabulated. Results: In total, 63% of patients reported not knowing whether a relevant clinical trial was available, 20% reported knowing that a clinical trial was not available, and 17% reported that a trial was available. Among patients reporting an available trial, 67% were recommended for enrollment. Knowing about the availability of clinical trials was associated with having ALL (odds ratio=2.9, 95% confidence interval=1.1, 7.8). Reporting that a clinical trial was available was positively associated with having ALL, Hodgkin lymphoma, non-Hodgkin lymphoma and sarcoma (relative to germ cell tumor) and working full-time or in school full-time (odds ratio=2.6, 95% confidence interval=1.0, 6.7). Concerns about involvement in research (57%) and problems accessing trials (21%) were the primary reasons cited for not enrolling among patients who knew that a trial was available. Conclusions: Improvement in AYA cancer patient clinical trial enrollment will require enhancing knowledge about trial availability and addressing this population’s concerns about participating in medical research.