Experiences of Family Communication and Cascade Genetic Testing for Hereditary Cancer in Medically Underserved Populations-A Qualitative Study.

We sought to explore the intrafamilial communication and cascade genetic testing (CGT) experiences of patients with hereditary cancer from diverse, medically underserved populations and their relatives. Participants included patients receiving oncology care at an urban, safety net hospital in Texas or comprehensive cancer center in Alabama and their first-degree relatives. In-depth semi-structured qualitative interviews were completed wherein patients shared their experiences with genetic counseling (GC), genetic testing (GT), and communicating their results to relatives. Relatives shared their experiences receiving information from the patient and considering CGT. Interviews were transcribed, coded, and themes were identified. Of 25 participating patients, most recalled key aspects of GC and their GT results. Most (80%) patients shared their results with relatives, but only some relatives underwent CGT; patients reported low perceived susceptibility to hereditary cancer as a common barrier to CGT for their relatives. Of 16 participating relatives, most reported feeling distress upon learning the patient's GT results. Relatives were fearful of learning their own CGT results but identified prevention and early detection as CGT benefits. Interviews identified opportunities during family communication to improve relatives' perceived susceptibility to hereditary cancer. Tailored resources may support patients and relatives experiencing distress and fear during GT. PREVENTION RELEVANCE: This study of intrafamilial communication and cascade genetic testing experiences of patients with hereditary cancer and their relatives from diverse, medically underserved populations identified relatives' perceived susceptibility to hereditary cancer risks, distress, and fear as frequent reactions and barriers to testing. These results may inform future hereditary cancer prevention efforts.

Cost-Effectiveness of Offering Cervical Cancer Screening with HPV Self-Sampling among African-American Women in the Mississippi Delta.

BACKGROUND: African-American women in the United States have an elevated risk of cervical cancer incidence and mortality. In the Mississippi Delta, cervical cancer disparities are particularly stark. METHODS: We conducted a micro-costing study alongside a group randomized trial that evaluated the efficacy of a patient-centered approach ("Choice" between self-collection at home for HPV testing or current standard of care within the public health system in Mississippi) versus the current standard of care ["Standard-of-care screening," involving cytology (i.e., Pap) and HPV co-testing at the Health Department clinics]. The interventions in both study arms were delivered by community health workers (CHW). Using cost, screening uptake, and colposcopy adherence data from the trial, we informed a mathematical model of HPV infection and cervical carcinogenesis to conduct a cost-effectiveness analysis comparing the "Choice" and "Standard-of-care screening" interventions among un/underscreened African-American women in the Mississippi Delta. RESULTS: When each intervention was simulated every 5 years from ages 25 to 65 years, the "Standard-of-care screening" strategy reduced cancer risk by 6.4% and was not an efficient strategy; "Choice" was more effective and efficient, reducing lifetime risk of cervical cancer by 14.8% and costing $62,720 per year of life saved (YLS). Screening uptake and colposcopy adherence were key drivers of intervention cost-effectiveness. CONCLUSIONS: Offering "Choice" to un/underscreened African-American women in the Mississippi Delta led to greater uptake than CHW-facilitated screening at the Health Department, and may be cost-effective. IMPACT: We evaluated the cost-effectiveness of an HPV self-collection intervention to reduce disparities.

Beyond words: Parental perceptions on human papilloma virus vaccination recommendations and its impact on uptake.

The goal was to evaluate how provider recommendations regarding Human Papillomavirus (HPV) vaccination impact uptake in a rural setting. The study used a cross-sectional, population-based design with cluster sampling to survey parents/guardians of children ages 9 to 18 in 2019 in Alabama. In addition to demographics/knowledge questions, participants were asked about type of healthcare provider recommendation and impressions they had from this interaction. The primary outcome variable was the result of the healthcare provider recommendation with options including: child got vaccinated day of recommendation, HPV vaccination was scheduled, or HPV vaccination was not scheduled. Bivariate analysis and multinomial logistic regression were performed. Of the 358 respondents, approximately 40% indicated receiving a recommendation from a provider to vaccinate their child. Age of the parent, race/ethnicity, educational attainment, and health insurance coverage were similar across groups. Female parents were more likely to report receiving HPV vaccination recommendation than males (44.1% vs. 23.3%; p = 0.009). The type of provider recommendation was not significantly associated with HPV vaccination uptake. The impression from the recommendation of HPV vaccination being "important" was significantly associated with the child being vaccinated that day (OR = 7.31, 95% CI = 2.20-24.3) as well as scheduling HPV vaccination (OR = 3.17, 95% CI 1.01-9.92). Parents who got the impression that "there was no hurry" were less likely to vaccinate their child that day (OR = 0.23, 95% CI = 0.09-0.59). Provider recommedation is well-established as a significant predictor of HPV vaccination, these findings indicate that how the recommendation is perceived may play a more important role in HPV vaccination uptake.

Given a choice between self-sampling at home for HPV testing and standard of care screening at the clinic, what do African American women choose? Findings from a group randomized controlled trial.

The goals of this study were to: (1) evaluate adherence to cervical cancer screening using a patient-centered approach that provided a choice of self-sampling at home for human papillomavirus (HPV) testing or standard of care screening at the local health department ('Choice') versus only standard of care screening at the local health department ('SCS') among un/under-screened African-American women; and (2) examine whether women given a choice were more likely to choose and adhere to self-sampling for HPV testing. We conducted a group randomized trial among un/under-screened African-American women in the Mississippi Delta, with "town" as the unit of randomization (12 towns). Both interventions (i.e., 'Choice' versus 'SCS') were delivered by Community Health Workers (CHWs) through a door-to-door approach. A total of 335 women were enrolled in the study from 2016 to 2019. The 'Choice' arm had a significantly (p = 0.005) higher adherence to screening compared to the 'SCS' arm after adjusting for the cluster effect and other relevant behavioral variables. Participants in the 'Choice' arm were 5.62 (95% CI 1.71-18.44) times more likely to adhere to cervical cancer screening compared to participants in the 'SCS' arm. Women in the 'Choice' arm were significantly more likely to choose (76%) and adhere to self-sampling at home for HPV testing (48% adherence) compared to standard of care screening at the local health department (7.5% adherence). A theory-driven, CHW-led intervention can effectively promote cervical cancer screening among un/under-screened African-American women in a rural setting when women are provided with a choice between two screening modalities. Clinical Trials Registration: NCT03713710.

The challenge of HPV vaccination uptake and opportunities for solutions: Lessons learned from Alabama.

The human papillomavirus (HPV) vaccine is an important tool for cancer prevention. However, vaccination rates in Alabama, a state with high rates of HPV-related cancers, remain below the national average. Our objective was to develop a comprehensive assessment of HPV vaccination in our state, with the goal to make recommendations for tailored multilevel interventions. A multimodal approach with quantitative and qualitative data was used to determine barriers and facilitators to HPV vaccination in Alabama. This included a survey of pediatric care providers and structured interviews with pediatricians, parents, nurses and community stakeholders. Two separate investigators evaluated the interview transcripts for major themes that occurred in 65% or more interviews. Major barriers included lack of knowledge, concerns about vaccine safety, and the link between the HPV vaccine and sexuality. Qualitative interviews further revealed barriers such as misinformation received from the internet and parental vaccine hesitancy. Opportunities for increasing vaccination include parental education, establishment of a reminder system, increasing access to HPV vaccine providers, and education for providers. Additional facilitators revealed through interviews included: trust in physicians, using the internet or social media to propagate positive messaging, physicians and clinical staff education, utilizing existing technology more effectively, highlighting nurses' roles as partners in HPV prevention, and the potential of schools as a venue for promotion of the vaccine. Our data are consistent with prior research showing major barriers to HPV vaccination. Several recommendations for optimizing HPV vaccination uptake in Alabama on the patient, provider and system level are given.