Harnessing the Power of Cancer Registries to Advance Our Understanding of Pediatric Cancer.

In 2020, the North American Association of Central Cancer Registries (NAACCR) was awarded a contract with the National Cancer Institute (NCI) to begin coordination of a new National Childhood Cancer Registry (NCCR), which would build on the existing infrastructure among both Surveillance, Epidemiology, and End Results (SEER) and National Program of Cancer Registries central registries. NCI and NAACCR planned to use the NCCR to securely match children across registries and with external data sources such as genomic data, medical and pharmacy claims, and other novel sources for residential history, financial toxicity and social determinants of health to build a robust database for pediatric cancer reporting and research. These linkages will enable researchers to address issues surrounding late effects of cancer treatment, recurrence, subsequent malignant neoplasms, and other critical outcomes.

Correlating knowledge of cervical cancer prevention and human papillomavirus with compliance after colposcopy referral.

OBJECTIVE: This study aimed to assess the impact of knowledge of cervical cancer biology and prevention as well as noncognitive measures on compliance with colposcopy referral in a high-risk population. METHODS: Participants in a US cohort of women with human immunodeficiency virus (HIV) infection and at-risk comparison women completed behavior questionnaires and instruments measuring knowledge of cervical cancer prevention, depressive symptoms, trust in physicians, and perceived stress. Examinations including Pap tests also were conducted. Associations with compliance with resulting indicated colposcopy were assessed in multivariable models. RESULTS: Of 326 women with indicated colposcopy, 222 (68%) were compliant with colposcopy referral and 104 (32%) were noncompliant. In multivariable analysis, better colposcopy compliance was associated with less education (odds ratio [OR] for compliance = 2.24, 95% confidence interval = 1.12-4.51 vs more than high school), previous abnormal Pap result (OR per previous abnormal Pap result = 1.08, 95% CI = 1.01-1.15), study site (OR for site with best vs worst compliance = 16.1, 95% CI = 2.91-88.6), and higher stress (OR for perceived stress scale 10 score >16 vs lower 3.25, 95% CI = 1.45-7.26). CONCLUSIONS: Noncognitive factors and how sites manage abnormal Pap testing affect colposcopy compliance. Educational interventions alone are unlikely to improve colposcopy compliance in similar high-risk populations.

Knowledge of cervical cancer prevention and human papillomavirus among women with HIV.

OBJECTIVE: To assess knowledge of and attitudes towards human papillomavirus (HPV), Pap testing, and the HPV vaccine. METHODS: In a multicenter U.S. cohort study, women with the human immunodeficiency virus (HIV) and at-risk comparison women completed 44-item standardized self-report questionnaires exploring their knowledge of cervical cancer prevention, HPV, and HPV vaccination. Results were correlated with demographic variables, measures of education and attention, and medical factors. Data were clustered using principal component analysis. Significant associations were assessed in multivariable models. RESULTS: Among 1588 women, HIV seropositive women better understood facts about cervical cancer prevention and HPV than seronegative women, but both had substantial knowledge deficits. Almost all women considered Pap testing important, although 53% of HIV seropositive and 48% of seronegative women considered cervical cancer not preventable (P=0.21). Only 44% of HIV seropositive women knew Paps assess the cervix, versus 42% of HIV seronegative women (P=0.57). Both groups understood that HPV causes genital warts and cervical cancer (67% of HIV seropositive vs. 55% of seronegative women, P=0.002). About half of both groups considered HPV vaccination extremely important for cervical cancer prevention. HIV seronegative women were more likely to report learning of HPV vaccination through advertising than from clinicians (81% vs. 64%, P<0.0001). CONCLUSION: High risk women need effective education about cervical cancer prevention, HPV, and HPV vaccination.

Pre-existing albuminuria predicts AIDS and non-AIDS mortality in women initiating antiretroviral therapy.

BACKGROUND: We previously reported an increased risk of all-cause and AIDS mortality among HIV-infected women with albuminuria (proteinuria or microalbuminuria) enrolled in the Women's Interagency HIV Study (WIHS) prior to the introduction of HAART. METHODS: The current analysis includes 1,073 WIHS participants who subsequently initiated HAART. Urinalysis for proteinuria and semi-quantitative testing for microalbuminuria from two consecutive study visits prior to HAART initiation were categorized as follows: confirmed proteinuria (both specimens positive for protein), confirmed microalbuminuria (both specimens positive with at least one microalbuminuria), unconfirmed albuminuria (one specimen positive for proteinuria or microalbuminuria), or negative (both specimens negative). Time from HAART initiation to death was modelled using proportional hazards analysis. RESULTS: Compared with the reference group of women with two negative specimens, the hazard ratio (HR) for all-cause mortality was significantly increased for women with confirmed microalbuminuria (HR 1.9, 95% CI 1.2-2.9). Confirmed microalbuminuria was also independently associated with AIDS death (HR 2.3, 95% CI 1.3-4.3), whereas women with confirmed proteinuria were at increased risk for non-AIDS death (HR 2.4, 95% CI 1.2-4.6). CONCLUSIONS: In women initiating HAART, pre-existing microalbuminuria independently predicted increased AIDS mortality, whereas pre-existing proteinuria predicted increased risk of non-AIDS death. Urine testing may identify HIV-infected individuals at increased risk for mortality even after the initiation of HAART. Future studies should consider whether these widely available tests can identify individuals who would benefit from more aggressive management of HIV infection and comorbid conditions associated with mortality in this population.

Changes in knowledge of cervical cancer prevention and human papillomavirus among women with human immunodeficiency virus.

OBJECTIVE: To estimate changes in high-risk women's knowledge of cervical cancer prevention, human papillomavirus (HPV), and HPV vaccination since introduction and marketing of HPV vaccines. METHODS: At study visits in 2007 and 2008-2009, women with the human immunodeficiency virus (HIV) and at-risk comparison women in a multicenter U.S. cohort study completed 44-item self-report questionnaires exploring their knowledge of cervical cancer prevention, HPV, and HPV vaccination. Results from 2007 were compared with those obtained in 2008-2009. Knowledge scores were correlated with demographic variables, measures of education and attention, and medical factors. Significant associations were assessed in multivariable models. RESULTS: HIV-seropositive women had higher knowledge scores than seronegative women at baseline (13.2 ± 5.7 compared with 11.8 ± 6.0, P < .001) and follow-up (14.1 ± 5.3 compared with 13.2 ± 5.5, P = .01), but the change in scores was similar (0.9 ± 5.3 compared with 1.5 ± 5.5, P = .13). Knowledge that cervical cancer is caused by a virus rose significantly (P = .005), but only to 24%. Belief that cervical cancer is preventable only rose from 52% to 55% (P = .04), but more than 90% of women in both periods believed regular Pap testing was important. In analysis of covariance models, higher baseline score, younger age, higher education level, higher income, and former- as opposed to never-drug users, but not HIV status, were associated with improved knowledge. CONCLUSION: High-risk women's understanding of cervical cancer and HPV has improved, but gaps remain. Improvement has been weakest for less educated and lower-income women. LEVEL OF EVIDENCE: II.