Background The high prevalence of HIV among adolescent girls and young women aged 15–24 in Eastern and Southern Africa indicates a substantial need for accessible HIV prevention and treatment services in this population. Amidst this need, Zambia has yet to meet global testing and treatment targets among adolescent girls and young women living with HIV. Increasing access to timely, high-quality HIV services in this population requires addressing the intensified anticipated and experienced stigma that adolescent girls and young women often face when seeking HIV care, particularly stigma in the health facility setting. To better understand the multi-level drivers and manifestations of health facility stigma, we explored health workers’ perceptions of clinic- and community-level stigma against adolescent girls and young women seeking sexual and reproductive health, including HIV, services in Lusaka, Zambia. Methods We conducted 18 in-depth interviews in August 2020 with clinical and non-clinical health workers across six health facilities in urban and peri-urban Lusaka. Data were coded in Dedoose and thematically analyzed. Results Health workers reported observing manifestations of stigma driven by attitudes, awareness, and institutional environment. Clinic-level stigma often mirrored community-level stigma. Health workers clearly described the negative impacts of stigma for adolescent girls and young women and seemed to generally express a desire to avoid stigmatization. Despite this lack of intent to stigmatize, results suggest that community influence perpetuates a lingering presence of stigma, although often unrecognized and unintended, in health workers and clinics. Conclusions These findings demonstrate the overlap in health workers’ clinic and community roles and suggest the need for multi-level stigma-reduction approaches that address the influence of community norms on health facility stigma. Stigma-reduction interventions should aim to move beyond fostering basic knowledge about stigma to encouraging critical thinking about internal beliefs and community influence and how these may manifest, often unconsciously, in service delivery to adolescent girls and young women.

Objectives We aim to assess external and internal attributes and operations of the Centers for Disease Control and Prevention (CDC)'s National Program of Cancer Registries (NPCR) central cancer registries by their consistency in meeting national data quality standards. Methods The NPCR 2017 Program Evaluation Instrument (PEI) data were used to assess registry operational attributes, including adoption of electronic reporting, compliance with reporting, staffing, and software used among 46 NPCR registries. These factors were stratified by (1) registries that met the NPCR 12-month standards for all years 2014-2017; (2) registries that met the NPCR 12-month standards at least once in 2014-2017 and met the NPCR 24-month standards for all years 2014-2017; and (3) registries that did not meet the NPCR 24-month standards for all years 2014-2017. Statistical tests helped identify significant differences among registries that consistently, sometimes, or seldom/never achieved data standards. Results Registries that always met the standards had a higher level of electronic reporting and a higher compliance with reporting among hospitals than registries that sometimes or seldom/never met the standards. Although not a statistically significant finding, the same registries also had a higher proportion of staffing positions filled, a higher proportion of certified tumor registrars, and more quality assurance and information technology staff. Conclusions This information may be used to understand the importance of various factors and characteristics, including the adoption of electronic reporting, that may be associated with a registry's ability to consistently meet NPCR standards. The findings may be helpful in identifying best practices for processing high-quality cancer data.

Integrated service delivery, providing coordinated services in a convenient manner, is important in HIV prevention and treatment for adolescents as they have interconnected health care needs related to HIV care, sexual and reproductive health and disease prevention. This review aimed to (1) identify key components of adolescent-responsive integrated service delivery in low and middle-income countries, (2) describe projects that have implemented integrated models of HIV care for adolescents, and (3) develop action steps to support the implementation of sustainable integrated models. We developed an implementation science-informed conceptual framework for integrated delivery of HIV care to adolescents and applied the framework to summarize key data elements in ten studies or programs across seven countries. Key pillars of the framework included (1) the socioecological perspective, (2) community and health care system linkages, and (3) components of adolescent-focused care. The conceptual framework and action steps outlined can catalyze design, implementation, and optimization of HIV care for adolescents.

Youth-friendly health care delivery models are needed to address the complex health care needs of adolescent girls and young women (AGYW). The aim of this study is to explore the lived experiences of AGYW seeking comprehensive HIV and sexual and reproductive health (SRH) care and to elicit their preferences for integrated health care services. We conducted in-depth interviews and focus group discussions in Lusaka, Zambia among 69 AGYW aged 10-20 who were HIV-negative or of unknown status and 40 AGYW aged 16-24 living with HIV. The data were coded through deductive and inductive processes and analyzed thematically using modified World Health Organization (WHO) dimensions of quality for youth-friendly services. AGYW expressed preference for one-stop clinics with integrated services that could provide HIV services along with other services such as pregnancy testing and family planning. AGYW also wanted information on staying healthy and approaches to prevent disease which could be delivered in the community setting such as youth clubs. An integrated clinic should address important attributes to AGYW including short wait time, flexible opening hours, assurance of confidentiality and positive staff attitudes. Youth-friendly, integrated care delivery models that incorporate AGYW preferences may foster linkages to care and improve outcomes among vulnerable AGYW.

Purpose: There is limited research linking data sources to evaluate the multifactorial impacts on the quality of treatment received and financial burden among young women with breast cancer. To address this gap and support future evaluation efforts, we examined the utility of combining patient survey and cancer registry data. Patient and Methods: We administered a survey to women, aged 18-39 years, with breast cancer from four U.S. states. We conducted a systematic response-rate analysis and evaluated differences between racial groups. Survey responses were linked with cancer registry data to assess whether surveys could reliably supplement registry data. Results: A total of 830 women completed the survey for a response rate of 28.4 %. Blacks and Asian/Pacific Islanders were half as likely to respond as white women. Concordance between survey and registry data was high for demographic variables (Cohen's kappa [k]: 0.879 to 0.949), moderate to high for treatments received (k: 0.467 to 0.854), and low for hormone receptor status (k: 0.167 to 0.553). Survey items related to insurance status, employment, and symptoms revealed racial differences. Conclusion: Cancer registry data, supplemented by patient surveys, can provide a broader understanding of the quality of care and financial impacts of breast cancer among young women.

PURPOSEThe CDC's National Program of Cancer Registries has expanded the use of electronic reporting to collect more timely information on newly diagnosed cancers. The adoption, implementation, and use of electronic reporting vary significantly among central cancer registries. We identify factors affecting the adoption of electronic reporting among these registries.METHODSDirectors and data managers of nine National Program of Cancer Registries took part in separate 1-hour telephone interviews in early 2019. Directors were asked about their registry's key data quality goals; staffing, resources, and tools used to aid processes; their definition and self-perception of electronic reporting adoption; key helpers and challenges; and cost and sustainability implications for adoption of electronic reporting. Data managers were asked about specific data collection processes, software applications, electronic reporting adoption and self-perception, information technology infrastructure, and helpers and challenges to data collection and processing, data quality, and sustainability of approach.RESULTSLarger registries identified organizational capacity and technical expertise as key aides. Other help for implementing electronic reporting processes came from partnerships, funding availability, management support, legislation, and access to an interstate data exchange. Common challenges among lower adopters included lack of capacity at both registry and data source levels, insufficient staffing, and a lack of information technology or technical support. Other challenges consisted of automation and interoperability of software, volume of cases received, state political environment, and quality of data received.CONCLUSIONFeedback from the formative evaluation yielded several useful solutions that can guide implementation of electronic reporting and help refine the technical assistance provided to registries. Our findings may help guide future process and economic evaluations of electronic reporting and identify best practices to strengthen registry operations.

Abstract Lack of family involvement is barrier to antiretroviral therapy adherence among adolescent girls and young women (AGYW). This study assessed family support for AGYW's engagement along the HIV care continuum to inform the design of a family-focused intervention in Lusaka, Zambia. We conducted 16 in-depth interviews and four focus group discussions with 40 AGYW living with HIV. Three strategies were identified to strengthen family support. First, emotional and instrumental support are highly valued by AGYW and should be further developed or reinforced. Second, AGYW wanted more informational support and open discussion of HIV from family, and an intervention should aim to enhance these types of support. Third, existing appraisal support reinforced anticipated stigma among AGYW and discouraged disclosure, yet participants wished for more interactions with peers living with HIV. Appraisal support should therefore be reframed to help AGYW decide to whom they should disclose and how to do so safely.

Abstract Research Objective: The objective of this study was to evaluate the insurance, employment, and financial experiences of young (age ≤ 39 years) female breast cancer patients and assess factors associated with any changes in their financial situation. Previous literature has shown that younger women are more likely to be diagnosed with late-stage disease that requires more-intensive treatments, while significant medical expenditures, productivity losses, financial hardship, and changes in employment and work productivity have been found in patients of all ages. Methods: A sample of women who were diagnosed with breast cancer between the ages of 18 and 39 years and residing in the states of California, Florida, Georgia, and North Carolina were identified. The sample included women who were (1) diagnosed with ductal carcinoma in situ (D05.90; 8500/2) or invasive breast cancer (C50; 8500/3) between January 2013 and December 2014; (2) between the ages of 18 and 39 years at the time of diagnosis; and (3) alive at the time of data extraction. We contacted 3,659 women by mail; 2,927 were alive with deliverable addresses. Of those, 830 women returned completed surveys, yielding a response rate of 28.4%. The survey instrument included 66 questions on demographics, insurance status, employment history, out-of-pocket cost, and overall financial well-being. Multivariate analysis was used to identify factors associated with financial decline. Principal Findings: About half of the women (47.4%) reported that treatment expenditures were higher than anticipated, and almost two-thirds (65.3%) had not discussed treatment costs with their care team. Almost a third of the patients (31.8%) reported treatment nonadherence due to cost. Factors associated with not receiving recommended care included very young age (<35 years) at diagnosis, self-insurance, the presence of comorbid conditions, and a late-stage diagnosis. Conclusions: Young female breast cancer patients experienced considerable financial burden regardless of insurance coverage. Most respondents made employment decisions that would allow them to keep their health insurance coverage. Knowledge about the financial consequences of breast cancer can help patients factor cost and employment into treatment decisions. Implications for Policy or Practice: This study highlights the burdens that many young women with breast cancer face, regardless of employment or insurance status, raising the possibility of target policy intervention. The strengths of this study include a unique focus on young breast cancer patients, identification of patients from population-based cancer registries, and the utilization of multifaceted insurance/financial indicators. Citation Format: Florence Tangka, Sujha Subramanian, Madeleine Jones, Patrick Edwards, Tim Flanigan, Jenya Kaganova, Kevin Smith, Cheryll Thomas, Nikki Hawkins, Temeika Fairley, Gery Guy, Juan Rodriguez. Insurance coverage, employment status, and financial wellbeing of young women diagnosed with breast cancer [abstract]. In: Proceedings of the 2020 San Antonio Breast Cancer Virtual Symposium; 2020 Dec 8-11; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2021;81(4 Suppl):Abstract nr PS7-45.

Purpose Breast cancer is the leading cause of cancer-related deaths in women younger than 40 years. We aim to evaluate cost as a barrier to care among female breast cancer patients diagnosed between 18 to 39 years. Methods In early 2017, we distributed a survey to women diagnosed with breast cancer between the ages of 18 and 39 years, as identified by the central cancer registries of California, Georgia, North Carolina, and Florida. We used multivariable statistics to explore cost-related barriers to receiving breast cancer care for the 830 women that completed the survey. Results About half of the women (47.4%) reported spending more on breast cancer care than expected, and almost two-thirds (65.3%) had not discussed costs with their care team. A third of the patients (31.8%) indicated forgoing care due to cost. Factors associated with not receiving anticipated care due to cost included age less than35 years at diagnosis, self-insurance, comorbid conditions, and late-stage diagnosis. Conclusion Previous studies using breast cancer registry data have not included detailed insurance information and care received by young women. Young women with breast cancer frequently forgo breast cancer care due to cost. Our results highlight the potential for policies that facilitate optimal care for young breast cancer patients which could include the provision of comprehensive insurance coverage.

Background: The economic cost of breast cancer is a major personal and public health problem in the United States. This study aims to evaluate the insurance, employment, and financial experiences of young female breast cancer survivors and to assess factors associated with financial decline. Methods: We recruited 830 women under 40 years of age diagnosed with breast cancer between January 2013 and December 2014. The study population was identified through California, Florida, Georgia, and North Carolina population-based cancer registries. The cross-sectional survey was fielded in 2017 and included questions on demographics, insurance, employment, out-of-pocket costs, and financial well-being. We present descriptive statistics and multivariate analysis to assess factors associated with financial decline. Results: Although 92.5% of the respondents were continuously insured over the past 12 months, 9.5% paid a “higher price than expected” for coverage. Common concerns among the 73.4% of respondents who were employed at diagnosis included increased paid (55.1%) or unpaid (47.3%) time off, suffering job performance (23.2%), and staying at (30.2%) or avoiding changing (23.5%) jobs for health insurance purposes. Overall, 47.0% experienced financial decline due to treatment-related costs. Patients with some college education, multiple comorbidities, late stage diagnoses, and self-funded insurance were most vulnerable. Conclusions: The breast cancer diagnosis created financial hardship for half the respondents and led to myriad challenges in maintaining employment. Employment decisions were heavily influenced by the need to maintain health insurance coverage. Impact: This study finds that a breast cancer diagnosis in young women can result in employment disruption and financial decline.

The economic burden of breast cancer for women under 50 in the United States remains largely unexplored, in part because young women make up a small proportion of breast cancer cases overall. To address this knowledge gap, we conducted a web-based survey to compare data from breast cancer survivors 18–39 years of age at first diagnosis and 40–49 years of age at first diagnosis. We administered a survey to a national convenience sample of 416 women who were 18–49 years of age at the time of their breast cancer diagnosis. We analyzed factors associated with financial decline using multivariate regression. Survivors 18–39 years of age at first diagnosis were more likely to report Stage II–IV breast cancer (P<0.01). They also quit their jobs more often (14.6%) than older survivors (4.4%; P<0.01) and faced more job performance issues (55.7% and 42.8%, respectively; P=0.02). For respondents in both groups, financial decline was more likely if the survivor had at least one comorbid condition (odds ratios: 2.36–3.21) or was diagnosed at Stage II–IV breast cancer (odds ratios: 2.04–3.51).

Background: The costs of cancer registration have previously been estimated for registries in the continental United States and many international registries; however, to date, there has been no economic assessment of population-based registries in the US-Affiliated Pacific Islands. This study estimates the costs and factors affecting the operations of US-Affiliated Pacific Island population-based cancer registries. Methods: The web-based International Registry Costing Tool1 was used to collect costs, resources used, cancer cases processed, and other registry characteristics from the Pacific Regional Central Cancer Registry (PRCCR), Federated States of Micronesia National Cancer Registry, and nine satellite jurisdictional registries within the US Pacific Islands. The registries provided data on costs for June 30, 2016-June 29, 2017, and cases processed during 2014. Results: Local host institutions provided a vital source of support for US-Affiliated Pacific Islands registries, covering substantial fixed costs, such as management and overhead. The cost per cancer case processed had an almost tenfold variation across registries, with the average total cost per case of about $1,413. The average cost per inhabitant in the US-Affiliated Pacific Islands was about $1.77 per person. Discussion: The challenges of collecting data from dispersed populations spread across multiple islands of the US-Affiliated Pacific Islands are likely leading factors driving the magnitude of the registries' cost per case. The economic information from this study provides a valuable source of activity-based cost data that can both help guide cancer control initiatives and help registries improve operations and efficiency.

Large differences exist in the coverage and quality of cancer surveillance systems across the world, with limited data currently available from low-resource settings. Information on the resources required to register cancer cases are needed in order for global, national, regional, and local stakeholders to adequately support cancer registry operations. The objective of this study is to estimate the cost of cancer registration and report the cost per cancer incident case, the cost per inhabitant in the area covered by the registry, and cost allocated to specific registry activities. The International Registry Costing Tool (IntRegCosting Tool) of the Centers for Disease Control and Prevention was used to assess the costs and resources used by 4 registries in sub-Saharan Africa (Zimbabwe, Uganda, Kenya, and Seychelles). The cost of registering a cancer case ranged from $9 to $96, with lower costs in low- and middle-income countries than in the high-income country. The cost of cancer registration at the population level is very low, ranging from 1 to 17 cents per person. The detailed cost information provided in this manuscript can help registries in in sub-Saharan Africa understand the cost of their registry operations and identify approaches to improve efficiency to meet program priorities. Furthermore, it provides additional evidence to inform funding and resource allocation decisions to advance cancer registration in the region.

OBJECTIVES: We evaluated whether primary care practices in the Medicare Multi-Payer Advanced Primary Care Practice (MAPCP) Demonstration improved the quality of care and patient outcomes for beneficiaries. STUDY DESIGN: For our quantitative analyses, we employed a pre-post study design with a comparison group using enrollment data, Medicare fee-for-service claims data, and Medicaid managed care and fee-for-service claims data, covering the period 2 to 4 years before Medicare joined the state patient-centered medical home initiatives through December 2014. We used difference-in-differences (DID) regression analysis to compare quality and outcomes in the period before and after the demonstration began. METHODS: We examined the extent to which MAPCP and comparison group beneficiaries received up to 11 process and preventive care measures, as well as 4 measures of potentially avoidable hospitalizations to assess patient outcomes. RESULTS: Analyses of Medicare and Medicaid data did not consistently reflect the positive impacts intended by the demonstration. Our descriptive and DID analysis found an inconsistent pattern among the process-of-care results, and there were some significant unfavorable associations between participation in MAPCP and avoidable hospitalizations. CONCLUSIONS: Our analyses showed few statistically significant, favorable impacts on quality metrics among Medicare or Medicaid beneficiaries receiving care from MAPCP practices.

Background Among countries in sub-Saharan Africa, Zambia has one of the highest incidences of HIV. Adolescent girls and young women (AGYW) are a particularly affected group because of their social and economic vulnerability. Objective The goal of this study is to test a multilevel package of interventions at the community and health system levels in Zambia in order to connect AGYW with a source of regular care, which will in turn allow for sustainable, successful implementation of regular HIV testing and adherence to antiretroviral treatment. Methods We will adapt prior tools to create the SHIELD (Support for HIV Integrated Education, Linkages to Care, and Destigmatization) intervention to educate and empower Zambian AGYW of 10-24 years of age and their families and to create community-based youth clubs to foster peer support. We will also develop integrated wellness care clinics to offer a youth-friendly environment that provides tailored clinical services. We will perform formative research, including focus groups and in-depth interviews, among AGYW, caregivers, and stakeholders to help inform the development and tailoring of the interventions. A cluster-randomized controlled trial will be implemented in Lusaka, with six clinic catchment areas randomized into three groups: zones with integrated wellness care clinics and SHIELD intervention, zones with only SHIELD intervention, and control zones with no intervention. We will assess HIV testing among the HIV-negative or unknown (HIV-/u) cohort, and retention in care along with viral load suppression will be evaluated in the HIV-positive (HIV+) cohort. We will use in-depth interviews and surveys to collect staff and stakeholder feedback after the trial. Cost-effectiveness of the interventions and return-on-investment impacts will be quantified using a microsimulation model. Results Interim results are expected in 2021, and the final results are expected in 2022. If this multilevel intervention is successful in establishing a comprehensive care continuum for HIV-affected AGYW, the Zambian Ministry of Health may advocate for expansion to additional settings to support national scale-up. Conclusions This integrated service delivery model can also be a platform to implement additional preventive services, so HIV-/u and HIV+ AGYW can receive comprehensive, integrated services. Trial Registration ClinicalTrials.gov NCT03995953; https://clinicaltrials.gov/ct2/show/NCT03995953 International Registered Report Identifier (IRRID) PRR1-10.2196/15314

Objective: The Support and Services at Home (SASH) program in Vermont aims to coordinate care and assist participants in accessing the health care and support services they need to maintain their health and age comfortably and safely in their homes. Most program participants are residents of U.S. Department of Housing and Urban Development (HUD)-assisted properties or Low-Income Housing Tax Credit (LIHTC) properties. Our objective is to estimate the impact of the first 5 1/2 years of the SASH program on the Medicare expenditures of these participants. Methods: We use a difference-in-differences model, comparing the change in the expenditures among the SASH participants with the change in the expenditures for a comparison group of Medicare beneficiaries in HUD-assisted or LIHTC properties that did not host the SASH program. Results: Our findings indicate that participants-particularly dual-eligible participants-in SASH panels that are overseen by the Cathedral Square Corporation, and in the subset of those panels that are in an urban county, experience slower growth in total Medicare expenditures and expenditures for hospital care, emergency department visits, and specialist physician visits relative to the comparison group. Conclusions: Although we do not find that the SASH program has a significant impact on Medicare expenditures for all participants in our sample, the favorable results among a subset of panels, containing nearly one-half of the SASH participants in HUD-assisted or LIHTC properties, provides evidence that a housing-plus-services model has the potential to slow the growth of healthcare costs.

Introduction The prevalence of non-communicable diseases (NCDs) is rising in low- and middle-income countries, including Kenya, disproportionately to the rest of the world. Our objective was to quantify patient payments to obtain NCD screening, diagnosis, and treatment services in the public and private sector in Kenya and evaluate patients’ ability to pay for the services. Methods and findings We collected payment data on cardiovascular diseases, diabetes, breast and cervical cancer, and respiratory diseases from Kenyatta National Hospital, the main tertiary public hospital, and the Kibera South Health Center—a public outpatient facility, and private sector practitioners and hospitals. We developed detailed treatment frameworks for each NCD and used an itemization cost approach to estimate payments. Patient affordability metrics were derived from Kenyan government surveys and national datasets. Results compare public and private costs in U.S. dollars. NCD screening costs ranged from $4 to $36, while diagnostic procedures, particularly for breast and cervical cancer, were substantially more expensive. Annual hypertension medication costs ranged from $26 to $234 and $418 to $987 in public and private facilities, respectively. Stroke admissions ($1,874 versus $16,711) and dialysis for chronic kidney disease ($5,338 versus $11,024) were among the most expensive treatments. Cervical and breast cancer treatment cost for stage III (curative approach) was about $1,500 in public facilities and more than $7,500 in the private facilities. A large proportion of Kenyans aged 15 to 49 years do not have health insurance, which makes NCD services unaffordable for most people given the overall high cost of services relative to income (average household expenditure per adult is $413 per annum). Conclusions There is substantial variation in patient costs between the public and private sectors. Most NCD diagnosis and treatment costs, even in the public sector, represent a substantial economic burden that can result in catastrophic expenditures.

This evaluation report describes the implementation and impacts of a program intended to improve health status and slow the growth of health care expenditures among older adults living in affordable housing properties. The Support and Services at Home (SASH) program connects participants with community-based services and promotes coordination of health care. In July 2011, the SASH program was launched in Vermont; and by June 2015, the latest date for this analysis, the program had expanded to include 54 panels and 4,741 participants across the state who had spent at least 3 months in the program. Our analysis combines findings from interviews with SASH staff members and key stakeholders, a survey of SASH participants, and an analysis of Medicare claims data. The SASH program faced challenges in expanding beyond the affordable housing properties and into the community. Highlighted successes included the partnerships formed with other organizations and the training program for SASH staff. Another notable success reported was the program’s ability to help participants remain in their homes, in terms of both allowing participants to age in place as their health and functional needs increase and helping participants avoid eviction. Self-reported health status and functioning were higher for SASH participants relative to the survey comparison group, and SASH participants reported fewer problems managing multiple medications. Overall, we do not find that the SASH program had a significant impact on the growth of Medicare expenditures. However, among participants enrolled in SASH panels established before April 2012 (early panels, representing 40% of SASH participants with Medicare living in affordable housing properties), growth in annual Medicare expenditures was slower by an estimated $1,227 per-beneficiary per year. These same beneficiaries in the early panels also had lower rates of hospitalization and slower rates of growth for hospital and specialty physician costs.

ow-to middle-income countries (LMICs) are disproportionately affected by the rise in prevalence of non-communicable diseases (NCDs).According to the World Health Organization, four groups of diseases-cardiovascular disease, cancer, respiratory disease and diabetes -comprise 82% of NCD deaths worldwide and three-quarters of the deaths related to NCD occur in LMIC [1].In Sub-Saharan Africa, the World Bank estimates that nearly 46% of all deaths will be attributable to NCDs by 2030, and 41% of all deaths for those aged 15-59 will be due to NCDs [2].