Development, Evaluation, and Implementation of a Pan-African Cancer Research Network: Men of African Descent and Carcinoma of the Prostate.

PURPOSE: Cancer of the prostate (CaP) is the leading cancer among men in sub-Saharan Africa (SSA). A substantial proportion of these men with CaP are diagnosed at late (usually incurable) stages, yet little is known about the etiology of CaP in SSA. METHODS: We established the Men of African Descent and Carcinoma of the Prostate Network, which includes seven SSA centers partnering with five US centers to study the genetics and epidemiology of CaP in SSA. We developed common data elements and instruments, regulatory infrastructure, and biosample collection, processing, and shipping protocols. We tested this infrastructure by collecting epidemiologic, medical record, and genomic data from a total of 311 patients with CaP and 218 matched controls recruited at the seven SSA centers. We extracted genomic DNA from whole blood, buffy coat, or buccal swabs from 265 participants and shipped it to the Center for Inherited Disease Research (Baltimore, MD) and the Centre for Proteomics and Genomics Research (Cape Town, South Africa), where genotypes were generated using the UK Biobank Axiom Array. RESULTS: We used common instruments for data collection and entered data into the shared database. Double-entered data from pilot participants showed a 95% to 98% concordance rate, suggesting that data can be collected, entered, and stored with a high degree of accuracy. Genotypes were obtained from 95% of tested DNA samples (100% from blood-derived DNA samples) with high concordance across laboratories. CONCLUSION: We provide approaches that can produce high-quality epidemiologic and genomic data in multicenter studies of cancer in SSA.

InfoSAGE: Supporting Elders and Families through Online Family Networks.

With an increasingly elderly population, families are finding it increasingly challenging to coordinate care for their older family members. This paper reports on the findings of InfoSAGE, an online private social network that has tools for communication and care coordination for elders and their families. The InfoSAGE system has 257 registered users; 52 of these opted into an in-depth longitudinal study. A descriptive analysis of these early participants, the online family networks, and barriers to participation that were encountered are presented.

InfoSAGE: Use of Online Technologies for Communication and Elder Care.

Aging creates new information and communication needs for families who are helping to coordinate care for frail parents. To identify how information and communication needs evolve with the aging process, we created a living laboratory of families, supported by an online private social network with tools for care coordination. Site registrants are invite to participate in a more in-depth survey-based longitudinal study. In year one, we assessed the feasibility of an online living laboratory. During this first year, 155 individuals registered on InfoSAGE, and 26% opted into the more in-depth longitudinal study. The survey response rate for those in the study was 61%. We present here a descriptive analysis of our early participants and networks, as well as barriers to participation that the study team encountered.

Stigmatization of substance use disorders among internal medicine residents.

BACKGROUND: Evidence suggests that some physicians harbor negative attitudes towards patients with substance use disorders (SUDs). The study sought to (1) measure internal medicine residents' attitudes towards patients with SUDs and other conditions; (2) determine whether demographic factors influence regard for patients with SUDs; and (3) assess the efficacy of a 10-hour addiction medicine course for improving attitudes among a subset of residents. METHODS: A prospective cohort study of 128 internal medicine residents at an academic medical center in New York City. Scores from the validated Medical Condition Regard Scale (MCRS) were used to assess attitude towards patients with alcoholism, dependence on narcotic pain medication, heartburn, and pneumonia. Demographic variables included gender, postgraduate training year, and prior addiction education. RESULTS: Mean baseline MCRS scores were lower (less regard) for patients with alcoholism (41.4) and dependence on narcotic pain medication (35.3) than for patients with pneumonia (54.5) and heartburn (48.9) (P < .0001). Scores did not differ based upon gender, prior hours of addiction education, or year of training. After the course, MCRS scores marginally increased for patients with alcoholism (mean increased by 0.16, P = .04 [95% confidence interval, CI: 0.004-0.324]) and dependence on narcotic pain medication (mean increased by 0.09, P = .10 [95% CI: 0.02-0.22]). CONCLUSIONS: Internal medicine residents demonstrate less regard for patients with SUDs. Participation in a course in addiction medicine was associated with modest attitude improvement; however, other efforts may be necessary to ensure that patients with potentially stigmatized conditions receive optimal care.