Methodology for linking Ryan White HIV/AIDS Program Services Report (RSR) client level data over multiple years.

BACKGROUND: The Health Resources and Services Administration's (HRSA), HIV/AIDS Bureau (HAB) is responsible for leading the nation's efforts to provide health care, medications, and support services to low-income people living with HIV through the Ryan White HIV/AIDS Program (RWHAP). The RWHAP funds and coordinates with cities, states, and local community-based organizations to deliver efficient and effective HIV care, treatment, and support services for over half a million vulnerable people living with HIV (PLWH) and their families in the United States. The annual RWHAP Services Report (RSR) is an important source of information for monitoring RWHAP's progress towards National HIV/AIDS Strategy goals. Since 2010, HRSA HAB has used the annual client-level RSR data to monitor program-related outcomes, conduct program evaluations, understand service provision, and conduct extensive analysis on disparities in viral suppression and retention in HIV care. HRSA HAB receives annual RSR submissions from RWHAP recipients and sub-recipients. However, the de-identified nature of the data limits HRSA HAB's ability to expand beyond year-to-year analyses and conduct additional analyses to evaluate outcomes for clients who are seen in multiple years. The current paper describes the development and validation of a method to link RSR client-level records across multiple data years. METHODS AND FINDINGS: Using seven RSR reporting years of data (2010 to 2016), we applied a Fellegi-Sunter (F-S) linkage model that used client demographic characteristics and their providers' geographic locations to calculate matching weights for each record pair based on estimated agreement and disagreement conditional probabilities across RSR years. To validate our methodology, we conducted an internal sample review and external validation to assess the level of accuracy of the linkage, and the extent to which the linked data set corresponds accurately to clinical records of individual clients. The linkage result yielded 70 to 80 percent year-to-year client carry-over rate over seven years of the RSR data; 96 percent linkage ratio from the internal sample review and 79.9 to 94.2 percent of provider network client carry- over rate per year from the external validation. CONCLUSIONS: This methodology addresses a gap in data analysis capabilities by allowing HRSA HAB to link RWHAP clients across reporting years. Despite weak identifying information and lack of continuity of service reporting, the longitudinal linkage improves HRSA HAB's ability to evaluate the patterns of viral suppression and monitor service utilization over time for individuals who receive services in multiple years. These analyses will support future analytic activities in understanding the impact and outcomes of the RWHAP, and will assist HRSA HAB in monitoring progress toward meeting National HIV/AIDS Strategy goals. For those looking for ways to assess health services data, the F-S unsupervised method combining weak identifying attributes and geographic proximity offers practical solutions to the problem of linking de-identified information about individuals across multiple years and improving longitudinal research.

Patient Navigation for Colonoscopy Completion: Results of an RCT.

INTRODUCTION: Colorectal cancer is a leading cause of cancer-related death in the U.S. Although screening reduces colorectal cancer incidence and mortality, screening rates among U.S. adults remain less than optimal, especially among disadvantaged populations. This study examined the efficacy of patient navigation to increase colonoscopy screening. STUDY DESIGN: RCT. SETTING/PARTICIPANTS: A total of 843 low-income adults, primarily Hispanic and non-Hispanic blacks, aged 50-75 years referred for colonoscopy at Boston Medical Center were randomized into the intervention (n=429) or control (n=427) groups. Participants were enrolled between September 2012 and December 2014, with analysis following through 2015. INTERVENTION: Two bilingual lay navigators provided individualized education and support to reduce patient barriers and facilitate colonoscopy completion. The intervention was delivered largely by telephone. MAIN OUTCOME MEASURE: Colonoscopy completion within 6 months of study enrollment. RESULTS: Colonoscopy completion was significantly higher for navigated patients (61.1%) than control group patients receiving usual care (53.2%, p=0.021). Based on regression analysis, the odds of completing a colonoscopy for navigated patients was one and a half times greater than for controls (95% CI=1.12, 2.03, p=0.007). There were no differences between navigated and control groups in regard to adequacy of bowel preparation (95.3% vs 97.3%, respectively). CONCLUSIONS: Navigation significantly improved colonoscopy screening completion among a racially diverse, low-income population. Results contribute to mounting evidence demonstrating the efficacy of patient navigation in increasing colorectal cancer screening. Screening can be further enhanced when navigation is combined with other evidence-based practices implemented in healthcare systems and the community.

Refining the Patient Navigation Role in a Colorectal Cancer Screening Program: Results From an Intervention Study.

BACKGROUND: Oncology patient navigators help individuals overcome barriers to increase access to cancer screening, diagnosis, and timely treatment. This study, part of a randomized intervention trial investigating the efficacy of patient navigation in increasing colonoscopy completion, examined navigators' activities to ameliorate barriers to colonoscopy screening in a medically disadvantaged population. METHODS: This study was conducted from 2012 through 2014 at Boston Medical Center. We analyzed navigator service delivery and survey data collected on 420 participants who were navigated for colonoscopy screening after randomization to this intervention. Key variables under investigation included barriers to colonoscopy, activities navigators undertook to reduce barriers, time navigators spent on each activity and per contact, and patient satisfaction with navigation services. Descriptive analysis assessed how navigators spent their time and examined what aspects of patient navigation were most valued by patients. RESULTS: Navigators spent the most time assessing patient barriers/needs; facilitating appointment scheduling; reminding patients of appointments; educating patients about colorectal cancer, the importance of screening, and the colonoscopy preparation and procedures; and arranging transportation. Navigators spent an average of 44 minutes per patient. Patients valued the navigators, especially for providing emotional/peer support and explaining screening procedures and bowel preparation clearly. CONCLUSIONS: Our findings help clarify the role of the navigator in colonoscopy screening within a medically disadvantaged community. These findings may help further refine the navigator role in cancer screening and treatment programs as facilities strive to effectively and efficiently integrate navigation into their services.

Key considerations in designing a patient navigation program for colorectal cancer screening.

Colorectal cancer is the second leading cause of cancer mortality among those cancers affecting both men and women. Screening is known to reduce mortality by detecting cancer early and through colonoscopy, removing precancerous polyps. Only 58.6% of adults are currently up-to-date with colorectal cancer screening by any method. Patient navigation shows promise in increasing adherence to colorectal cancer screening and reducing health disparities; however, it is a complex intervention that is operationalized differently across institutions. This article describes 10 key considerations in designing a patient navigation intervention for colorectal cancer screening based on a literature review and environmental scan. Factors include (1) identifying a theoretical framework and setting program goals, (2) specifying community characteristics, (3) establishing the point(s) of intervention within the cancer continuum, (4) determining the setting in which navigation services are provided, (5) identifying the range of services offered and patient navigator responsibilities, (6) determining the background and qualifications of navigators, (7) selecting the method of communications between patients and navigators, (8) designing the navigator training, (9) defining oversight and supervision for the navigators, and (10) evaluating patient navigation. Public health practitioners can benefit from the practical perspective offered here for designing patient navigation programs.

Multi-center feasibility study evaluating recruitment, variability in risk factors and biomarkers for a diet and cancer cohort in India.

BACKGROUND: India's population exhibits diverse dietary habits and chronic disease patterns. Nutritional epidemiologic studies in India are primarily of cross-sectional or case-control design and subject to biases, including differential recall of past diet. The aim of this feasibility study was to evaluate whether a diet-focused cohort study of cancer could be established in India, providing insight into potentially unique diet and lifestyle exposures. METHODS: Field staff contacted 7,064 households within three regions of India (New Delhi, Mumbai, and Trivandrum) and found 4,671 eligible adults aged 35-69 years. Participants completed interviewer-administered questionnaires (demographic, diet history, physical activity, medical/reproductive history, tobacco/alcohol use, and occupational history), and staff collected biological samples (blood, urine, and toenail clippings), anthropometric measurements (weight, standing and sitting height; waist, hip, and thigh circumference; triceps, sub-scapula and supra-patella skin fold), and blood pressure measurements. RESULTS: Eighty-eight percent of eligible subjects completed all questionnaires and 67% provided biological samples. Unique protein sources by region were fish in Trivandrum, dairy in New Delhi, and pulses (legumes) in Mumbai. Consumption of meat, alcohol, fast food, and soft drinks was scarce in all three regions. A large percentage of the participants were centrally obese and had elevated blood glucose levels. New Delhi participants were also the least physically active and had elevated lipids levels, suggesting a high prevalence of metabolic syndrome. CONCLUSIONS: A high percentage of participants complied with study procedures including biological sample collection. Epidemiologic expertise and sufficient infrastructure exists at these three sites in India to successfully carry out a modest sized population-based study; however, we identified some potential problems in conducting a cohort study, such as limited number of facilities to handle biological samples.

Comparative community outreach to increase cervical cancer screening in the Mississippi Delta.

OBJECTIVE: The aim of the study was to increase participation in cervical cancer screening of under-screened women living in the Mississippi Delta, a U.S. population at high risk for cervical cancer. METHODS: We conducted a door-to-door feasibility study of women living in the Mississippi Delta to increase participation in cervical cancer screening in 2009-10. Women (n=119) aged 26-65 years who had not been screened in last 3 years or more, were not pregnant, and had a cervix were offered a cost-free choice: clinic-based Pap testing or home self-collection with HPV DNA testing. RESULTS: Seventy-seven women (64.7%) chose self-collection with HPV testing, of which sixty-two (80.5%) returned their self-collected specimen. By comparison, 42 women (35.3%) chose Pap testing, of which 17 (40.5%) attended their clinic appointment. Thus there was an almost 4-fold greater participation of under-screened women in self-collection with HPV testing than in free Pap testing (78.4% vs. 21.5%). CONCLUSIONS: We found that offering self-collection will increase participation in cervical cancer screening among under-screened populations living in the Mississippi Delta. Based on these preliminary results, we suggest that self-collection with HPV DNA testing might complement current Pap testing programs to reach under-screened populations of women, such as those living in the Mississippi Delta.

Observational epidemiologic studies of nutrition and cancer: the next generation (with better observation).

It would be of enormous public health importance if diet and physical activity, both modifiable behavioral factors, were causally related to cancer. Nevertheless, the nutritional epidemiology of cancer remains problematic, in part because of persistent concerns that standard questionnaires measure diet and physical activity with too much error. We present a new strategy for addressing this measurement error problem. First, as background, we note that food frequency and physical activity questionnaires require respondents to report "typical" diet or activity over the previous year or longer. Multiple 24-hour recalls (24HR), based on reporting only the previous day's behavior, offer potential cognitive advantages over the questionnaires, and biomarker evidence suggests the 24-hour dietary recall is more accurate than the food frequency questionnaire. The expense involved in administering multiple 24 HRs in large epidemiologic studies, however, has up to now been prohibitive. In that context, we suggest that Internet-based 24 HRs, for both diet and physical activity, represent a practical and cost-effective approach for incorporating multiple recalls in large epidemiologic studies. We discuss (1) recent efforts to develop such Internet-based instruments and their accompanying software support systems; (2) ongoing studies to evaluate the feasibility of using these new instruments in cohort studies; (3) additional investigations to gauge the accuracy of the Internet-based recalls vis-à-vis standard instruments and biomarkers; and (4) new statistical approaches for combining the new instruments with standard assessment tools and biomarkers The incorporation of Internet-based 24 HRs into large epidemiologic studies may help advance our understanding of the nutritional determinants of cancer.