Search

ObjectiveWe explored patient perspectives after a positive human papillomavirus (HPV) self-sampling result to describe experiences and information needs for this home-based screening modality.Materials and methodsWe recruited women who tested high-risk (hr) HPV positive during a pragmatic trial evaluating mailed hrHPV self-sampling kits as an outreach strategy for women overdue for Pap screening in a U.S. integrated health care system. Telephone interviews were conducted from 2014 to 2017. Five independent coders analyzed transcripts using iterative content analysis.ResultsForty-six women (61% of invited; median age 55.5 years) completed a semistructured interview. Six themes emerged: (1) convenience of home-based screening, (2) intense feelings and emotions after receiving positive kit results, (3) importance of seeing provider and discussing kit results, (4) information seeking from various sources, (5) confusion about purpose and meaning of HPV versus Pap tests, and (6) concern that HPV self-sampling is inaccurate when the subsequent Pap test is normal.ConclusionsAlthough women liked the kit's convenience, discussion about discordant home HPV and in-clinic Pap results led them to question the accuracy of HPV self-sampling. Patient-provider communication around home HPV kits is more complex than for reflex or cotesting because clinician-collected Pap results are unknown at the time of the positive kit result. Patients need education about differences between HPV and Pap tests and how they are used for screening and follow-up. To reassure patients and keep them interested in self-sampling, education should be provided at multiple time points during the screening process.

Introduction: Fertility after cancer is a top concern for adolescents and young adults with cancer (AYAs) (15–39 years old at diagnosis). The authors characterized live births after cancer by race and ethnicity ("race/ethnicity") in a population‐based sample of female AYAs. Methods: This study used Texas Cancer Registry data linked to birth certificates (1995–2016) to estimate cumulative incidence of live birth, based on first live birth after cancer, and compared differences by race/ethnicity. Proportional subdistribution hazards models were used to estimate associations between race/ethnicity and live birth, adjusted for diagnosis age, cancer type, stage, year, and prior live birth, overall and for each cancer type. Results: Among 65,804 AYAs, 10‐year cumulative incidence of live birth was lower among non‐Hispanic Black AYAs than other racial/ethnic groups: 10.2% (95% confidence interval [CI], 9.4–10.9) compared to 15.9% (95% CI, 14.1–17.9) among Asian or Pacific Islander, 14.7% (95% CI, 14.2–15.3) among Hispanic, and 15.2% (95% CI, 14.8–15.6) among non‐Hispanic White AYAs (p <.01). In the adjusted overall model, Black AYAs were less likely to have a live birth after cancer than all other groups. In adjusted models for each cancer type, live birth was significantly less likely for Black AYAs with gynecologic cancers or lymphomas (compared to White AYAs) or thyroid cancers (compared to Hispanic AYAs). Conclusion: Black AYAs are less likely than AYAs of other races/ethnicities to have a live birth after cancer, in contrast to patterns of live birth in the general population. Research and action to promote childbearing equity after cancer are imperative. The authors used Texas Cancer Registry data linked to live birth certificates (1995–2016) to characterize live births after cancer by race and ethnicity ("race/ethnicity") among females diagnosed with cancer as adolescents and young adults (AYAs) (15–39 years old at diagnosis). Overall and within certain cancer types, Black AYAs were less likely than AYAs of other races or ethnicities to have a live birth after cancer, in contrast to general population birth patterns. [ABSTRACT FROM AUTHOR]

Background: Survivors of adolescent and young adult (AYA) cancer experience significant psychological distress and encounter barriers to accessing mental health care. Few studies have investigated racial/ethnic disparities in psychological health outcomes among AYA survivors, and none have compared outcomes within a racially minoritized population. Methods: National Health Interview Survey data (2010–2018) were analyzed that identified non‐Hispanic Black (hereafter, Black) survivors of AYA cancer and age‐ and sex‐matched Black noncancer controls. Sociodemographic factors, chronic health conditions, modifiable behaviors (smoking and alcohol use), and psychological outcomes were assessed with χ2 tests. Logistic regression models, adjusted for survey weights, were used to evaluate the odds of psychological distress by cancer status after adjusting for covariates. Interactions between variables and cancer status were investigated. Results: The study included 334 Black survivors of AYA cancer and 3340 Black controls. Compared to controls, survivors were more likely to report moderate/severe distress (odds ratio [OR], 1.64; p <.001), use mental health care (OR, 1.53; p =.027), report an inability to afford mental health care (OR, 3.82; p <.001), and use medication for anxiety and/or depression (OR, 2.16; p =.001). Forty‐one percent of survivors reported moderate/severe distress, and only 15% used mental health care. Among survivors, ages 18–39 years (vs. 40–64 years) and current smoking (vs. never smoking) were associated with the presence of moderate/severe distress. Among survivors with distress, high poverty status was associated with reduced utilization of mental health care. Conclusions: A cancer diagnosis for a Black AYA is associated with greater psychological distress within an already vulnerable population. Black survivors of adolescent and young adult cancer have higher levels of psychological distress than Black individuals without a history of cancer and are more likely to report an inability to afford mental health care. There is a gap in receipt of mental health care among Black survivors, with approximately 40% of survivors reporting moderate/severe distress and only 15% reporting a mental health care visit. [ABSTRACT FROM AUTHOR]

Purpose: Adolescent and young adult cancer survivors (AYAs) experience early-onset chronic conditions and disrupted psychosocial development. We report prevalence of disruptions in care delivery and social support during the early wave of the pandemic in a national sample of AYAs in the United States. Materials and Methods: We used data from the population-based National Health Interview Survey (NHIS; July–December 2020), which allows for nationally representative estimates, and included questions related to COVID-19. We identified 61 AYAs diagnosed with cancer between ages 15 and 39 years and not currently receiving cancer treatment and 244 age- and sex-matched controls. We compared the proportion of AYAs and controls reporting delayed care due to the pandemic, not getting needed care due to the pandemic, and changes in social and emotional support. Results: AYAs were predominantly non-Hispanic White (61.3%) and female (58.8%), with a median age at diagnosis of 28 years (interquartile range [IQR] 21–31 years). Fewer AYAs were employed (52.1% vs. 71.5%), and more lived in poverty (32.0% vs. 12.4%) and felt depressed daily (9.9% vs. 3.0%, all p < 0.05). The proportion of AYAs reporting delayed care (39.8% vs. 15.3%) and not getting needed care (31.7% vs. 10.4%) due to the pandemic was more than double that of controls (both p < 0.01). One in five AYAs experienced less social and emotional support compared to the prior year, although not significantly different from controls (21.6% vs. 12.4%, p = 0.10). Conclusions: The pandemic disrupted AYAs' care and exacerbated their psychosocial challenges. Providers and health systems should prioritize reconnecting AYAs to affordable and comprehensive care. [ABSTRACT FROM AUTHOR]

Women living with HIV (WLWH) are at increased risk of anal cancer compared to women without HIV, often due to persistent human papillomavirus (HPV) infections. This paper describes current practices and challenges conducting anal cancer screening for WLWH at an urban integrated safety-net system and a non-profit community-based HIV clinic. We conducted 25 semi-structured interviews with clinical and administrative stakeholders to assess knowledge, clinic practices and procedures, and experiences with anal cancer screening. Interview transcripts and fieldnotes were thematically analyzed using an iterative deductive and inductive coding scheme. Findings were organized by the Consolidated Framework for Implementation Research (CFIR) domains and constructs. Provider-level barriers to conducting anal cancer screening included limited knowledge of guidelines. System-level barriers included: structural characteristics such as lack of coordination between clinics to discern provider roles and responsibilities; and limitations in available resources such as configuration of electronic health records and infrastructure to manage referrals of abnormal anal Pap results. We conclude that anal cancer screening and follow-up for WLWH requires organization and coordination between multiple care teams, updated clinical information systems to facilitate communication and support anal Pap ordering and result documentation, and infrastructure that includes policies and protocols for management of abnormal results. Trial registration: ClinicalTrials.gov identifier: NCT02135419. [ABSTRACT FROM AUTHOR]

Survivors of adolescent and young adult (AYA; age 15-39 years at diagnosis) cancer are a growing population with the potential to live for many decades after treatment completion. Survivors of AYA cancer are at risk for adverse long-term outcomes including chronic conditions, secondary cancers, impaired fertility, poor psychosocial health and health behaviors, and financial toxicity. Furthermore, survivors of AYA cancer from racially minoritized and low socioeconomic status populations experience disparities in these outcomes, including lower long-term survival. Despite these known risks, most survivors of AYA cancer do not receive routine survivorship follow-up care, and research on delivering high-quality, evidence-based survivorship care to these patients is lacking. The need for survivorship care was initially advanced in 2006 by the Institute of Medicine. In 2019, the Quality of Cancer Survivorship Care Framework (QCSCF) was developed to provide an evidence-based framework to define key components of optimal survivorship care. In this commentary focused on survivors of AYA cancer, we apply the QCSCF framework to describe models of care that can be adapted for their unique needs, multilevel factors limiting equitable access to care, and opportunities to address these factors to improve short- and long-term outcomes in this vulnerable population., (© The Author(s) 2024. Published by Oxford University Press. All rights reserved. For permissions, please email: journals.permissions@oup.com.)

Evidence suggests neighborhood-level factors contribute to cancer outcomes, though most research focuses on pediatric and adult populations. Using population-based data from the Texas Cancer Registry, we examined neighborhood-level social vulnerability, a composite measure of 14 census tract-level social risk factors, and survival among 112,142 adolescents and young adults with cancer (AYAs, age 15-39 years). We estimated one-, five-, and ten-year overall survival by quintile of social vulnerability and used Cox proportional hazards models (two-sided significance testing) to estimate the association between social vulnerability and all-cause mortality. Survival decreased as social vulnerability increased; for example, five-year survival was 86.5% (95% CI 85.1, 87.0) in the least vulnerable quintile compared to 74.0% (95% CI 73.4, 74.5) in the most vulnerable quintile. Social vulnerability was associated with all-cause mortality in adjusted models (highest vs lowest quintile: aHR 1.55, 95% CI 1.48, 1.63). Achieving equity in AYAs' survival requires interventions to address neighborhood disparities., (© The Author(s) 2024. Published by Oxford University Press. All rights reserved. For permissions, please email: journals.permissions@oup.com.)

Background: We examined adverse birth outcomes among adolescent and young adult women diagnosed with cancer (AYA women, ages 15-39 years) during pregnancy., Methods: We linked data from the Texas Cancer Registry, vital records, and Texas Birth Defects Registry to identify all singleton births to AYA women diagnosed during pregnancy from January 1999 to December 2016. We compared prevalence of adverse live birth outcomes between AYA women and women without cancer (matched 1:4 on age, race and ethnicity, and year). Among AYA women, we used log-binomial regression to identify factors associated with these outcomes. Statistical tests were 2-sided., Results: AYA women had 1271 singleton live births and 20 stillbirths. AYA women (n = 1291) were 33.3% Hispanic and 9.8% non-Hispanic Black and most commonly had breast (22.5%), thyroid (19.8%), and gynecologic (13.3%) cancers. Among live births, AYA women had a higher prevalence of low birth weight offspring (30.1% vs 9.0%), very preterm (5.7% vs 1.2%), and preterm birth (25.1% vs 7.2%); cesarean delivery (44.3% vs 35.2%); and low Apgar score (2.7% vs 1.5%), compared with women without cancer (n = 5084) (all P < .05). Prevalence of any birth defect by age 12 months did not statistically differ (5.2% vs 4.7%; P = .48), but live births to AYA women more often had heart and circulatory system defects (2.2% vs 1.3%; P = .01). In adjusted models, cancer type and chemotherapy were associated with adverse live birth outcomes., Conclusions: AYA women diagnosed during pregnancy have higher prevalence of adverse birth outcomes and face difficult decisions in balancing treatment risks and benefits., (© The Author(s) 2023. Published by Oxford University Press. All rights reserved. For permissions, please email: journals.permissions@oup.com.)

Background: Gonadotoxic effects of cancer treatment may increase risk of adverse birth outcomes in adolescent and young adult (AYA, aged 15-39 years) women diagnosed with cancer. We estimated risk of stillbirth (fetal death of gestational age ≥20 weeks or weighing ≥350 grams) in a population-based sample of AYA women., Methods: AYA women diagnosed with cancer between January 1, 1995, and December 31, 2015, were identified using the Texas Cancer Registry and linked to live birth and fetal death certificates through December 31, 2016. Among AYA women, cumulative incidence of stillbirth was estimated by gestational age, and Poisson regression models identified factors associated with stillbirth. Standardized fetal mortality ratios (SMR) compared the observed fetal mortality rate in AYA women with the expected fetal mortality rate in the general population., Results: A total of 11 628 live births and 68 stillbirths occurred to 8402 AYA women after diagnosis. Cumulative incidence of stillbirth in AYA women was 0.70% (95% confidence interval [CI] = 0.51% to 0.96%) at 40 weeks of gestation. Risk of stillbirth was higher among Hispanic (risk ratio [RR] = 2.64, 95% CI = 1.29 to 5.41) and non-Hispanic Black (RR = 4.13, 95% CI = 1.68 to 10.16) women compared with non-Hispanic White women; there was no association with receipt of chemotherapy or time since diagnosis. Age- and race and ethnicity-adjusted fetal mortality rate in AYA women was similar to the general population (SMR = 0.99, 95% CI = 0.77 to 1.26)., Conclusions: AYA women may be counseled that overall risk of stillbirth is low, and for most, cancer does not appear to confer additional risk., (© The Author(s) 2022. Published by Oxford University Press. All rights reserved. For permissions, please email: journals.permissions@oup.com.)