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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.

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.

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.

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

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.

Introduction Cancer registration is an important activity for informing cancer control activities. Cancer registries in Sub-Saharan Africa have limited resources to effectively operate because of competing priorities. To date, there has not been an assessment of the resources and funding needed to perform all the activities essential for cancer registration in Kenya. Evidence will help registries to quantify and advocate for the funds needed to sustain, enhance, and expand high quality cancer registration in Kenya. Methods In this study, we used the Centers for Disease Control and Prevention's (CDC's) International Registry Costing Tool ( IntRegCosting Tool ) to evaluate the funding, cost, and labor resources used to perform the cancer registry operations in Nairobi County for two annual periods between July 2012 and June 2014. Results Funding from grants, research studies, and international organizations provided 70% of the registry operations' cost. For both time periods, the most-costly registry activities were related to administration, management, and training, along with data acquisition activities such as data abstraction, entry, and validation. Even among these core registry activities, however, substantial variations existed. Conclusions Stable funding for cancer registry operations is necessary to sustain core registry activities in other to deliver high-quality data, which in turn is necessary to foster evidence-based policies to improve cancer outcomes. As stakeholders look into expanding the Nairobi Cancer Registry into a national program, the cost data provided in this study will help justify the funding required for sustaining and expanding registry activities.

The key aims of this study were to identify sources of support for cancer registry activities, to quantify resource use and estimate costs to operate registries in low- and middle-income countries (LMIC) at different stages of development across three continents.Using the Centers for Disease Control and Prevention's (CDC's) International Registry Costing Tool (IntRegCosting Tool), cost and resource use data were collected from eight population-based cancer registries, including one in a low-income country (Uganda [Kampala)]), two in lower to middle-income countries (Kenya [Nairobi] and India [Mumbai]), and five in an upper to middle-income country (Colombia [Pasto, Barranquilla, Bucaramanga, Manizales and Cali cancer registries]).Host institution contributions accounted for 30%-70% of total investment in cancer registry activities. Cancer registration involves substantial fixed cost and labor. Labor accounts for more than 50% of all expenditures across all registries. The cost per cancer case registered in low-income and lower-middle-income countries ranged from US $3.77 to US $15.62 (United States dollars). In Colombia, an upper to middle-income country, the cost per case registered ranged from US $41.28 to US $113.39. Registries serving large populations (over 15 million inhabitants) had a lower cost per inhabitant (less than US $0.01 in Mumbai, India) than registries serving small populations (under 500,000 inhabitants) [US $0.22] in Pasto, Colombia.This study estimates the total cost and resources used for cancer registration across several countries in the limited-resource setting, and provides cancer registration stakeholders and registries with opportunities to identify cost savings and efficiency improvements. Our results suggest that cancer registration involve substantial fixed costs and labor, and that partnership with other institutions is critical for the operation and sustainability of cancer registries in limited resource settings. Although we included registries from a variety of limited-resource areas, information from eight registries in four countries may not be large enough to capture all the potential differences among the registries in limited-resource settings.

Background Maintaining population-based registries requires adequate and sustained resources; however, to date there has been no systematic evaluation to identify the resource needs for cancer registration in most countries, including Colombia. A systematic assessment of the costs can quantify the funding required and identify processes to improve efficiency of cancer registries. Methods The Centers for Disease Control and Prevention's (CDC's) International Registry Costing Tool ( IntRegCosting Tool) was tailored specifically for the Colombian registries and was used to collect resource use data from five regional population-based cancer registries: Barranquilla, Bucaramanga, Cali, Manizales, and Pasto. The registries provided cost data for the year 2013 and cancer cases corresponding to the year 2010. Results We identified an almost threefold variation in the average cost per case (77,932 to 214,082 Colombian pesos or US $41 to US $113 in 2013) across the registries, but there were also substantial differences in data collection approaches, types of data collected, and activities performed. Cost per inhabitant varied between 95 and 415 Colombian pesos (US $0.05 to US $0.22). Between 20% and 45% of the total cost was due to fixed cost activities. Conclusions The detailed economic information presented in this study constitutes a valuable source of activity-based cost data that registries can use to compare operations, assess key factors that lead to differences in cost per case, and identify potential approaches to improve efficiencies. Furthermore, the knowledge gained from studying the Colombian registries can help inform the planning and operations of other registries in the region.

The objective of this study was to determine the major financial barriers that affect people's access to oral cancer treatment in India. Barriers researched included not only the direct medical costs, but also the direct non-medical costs, such as transportation and lodging, and the indirect cost of missing work or family duties. Four hundred patients from two regions in southern India responded to a 2014 survey that asked about access and barriers to care. Traditionally, policies to increase screening, diagnosis and treatment of oral cancer have focused on affordable or free medical services for low-income groups; however, the hidden costs associated with receiving care are a significant burden. Transportation, lodging, loss of wages, and time away from family duties are key barriers to oral cancer care that policy makers should address.

Background This article reports on the methods and framework we have developed to guide economic evaluation of noncommunicable disease registries. Methods We developed a cost data collection instrument, the Centers for Disease Control and Prevention's (CDC's) International Registry Costing Tool ( IntRegCosting Tool) , based on established economics methods We performed in-depth case studies, site visit interviews, and pilot testing in 11 registries from multiple countries including India, Kenya, Uganda, Colombia, and Barbados to assess the overall quality of the data collected from cancer and cardiovascular registries. Results Overall, the registries were able to use the IntRegCosting Tool to assign operating expenditures to specific activities. We verified that registries were able to provide accurate estimation of labor costs, which is the largest expenditure incurred by registries. We also identified several factors that can influence the cost of registry operations, including size of the geographic area served, data collection approach, local cost of living, presence of rural areas, volume of cases, extent of consolidation of records to cases, and continuity of funding. Conclusion Internal and external registry factors reveal that a single estimate for the cost of registry operations is not feasible; costs will vary on the basis of factors that may be beyond the control of the registries. Some factors, such as data collection approach, can be modified to improve the efficiency of registry operations. These findings will inform both future economic data collection using a web-based tool and cost and cost-effectiveness analyses of registry operations in low- and middle-income countries (LMICs) and other locations with similar characteristics.

Background The Mumbai Cancer Registry is a population-based cancer registry that has been in operation for more than five decades and has successfully initiated and integrated three satellite registries in Pune, Nagpur, and Aurangabad, each covering specific urban populations of the Indian state Maharashtra. Data collectors at the satellites perform data abstraction, but Mumbai carries out all other core registration activities such as data analysis and quality assurance. Each of the three satellite registries follows the same data collection methodology as the main Mumbai Cancer Registry. This study examines the cost of operating the Mumbai and its satellite cancer registries. Methods We modified and used the Centers for Disease Control and Prevention's (CDC's) International Registry Costing Tool ( IntRegCosting Tool ) to collect cost and resource use data for the Mumbai Cancer Registry and three satellites. Results Almost 60% of the registration expenditure was borne by the Indian Cancer Society, which hosts the Mumbai Cancer Registry, and more than half of the registry expenditure was related to data collection activities. Across the combined registries, 93% of the expenditure was spent on labor. Overall, registration activities had a low cost per case of 226.10 Indian rupees (or a little less than 4.00 US dollars in 2014 [used average exchange rate in 2014: 1 US $=60 Indian rupees]). Conclusion The centralization of fixed-cost activities in Mumbai likely resulted in economies of scale in operating the Mumbai and satellite registries, which, together, report on almost 20,000 cancer cases annually. In middle-income countries like India, where financial resources are limited, the operational framework provided by the Mumbai and satellite registries can serve as a model for other registries looking to expand data collection.

Background This report describes the resources required to support the integrated approach of the Barbados National Registry for Chronic Non-communicable Diseases (BNR) to non-communicable disease (NCD) case registration, and to identify differences in cost for collecting and maintaining information on cancer and cardiovascular disease (CVD) case registration. Methods We used the modified Centers for Disease Control and Prevention’s International Registry Costing Tool to collect data from the CVD and cancer registries. We used cancer and CVD cost data for the annual period April 2014 through March 2015 to estimate the total cost and cost per case. We used prospectively collected average annual CVD cases, and for cancer cases we assumed 2 or 3 years are needed for retrospective data collection. Results The Ministry of Health provided 56% of the resources for the registries. Labor accounted for over 70% of both registries’ budgets, while management and administration, along with data collection and analysis, incurred the highest costs per case. Total variable cost activities related to data collection and analysis were higher for the CVD component (US$131,297) than the cancer component (US$58,917). The CVD cost per case (US$489) was in between the cancer 2-year (US$382) and the cancer 3-year (US$573) cost-per-case estimates. Conclusion These findings indicate that there are substantial fixed costs related to management and administration of NCD registries. All registries need management and administration support. When registries are combined, management and administration costs can be shared. We project that registries that can share fixed-cost infrastructure are likely to incur a lower total cost per case.

Background The objectives of this study are (1) to estimate the cost of operating the Kampala Cancer Registry (KCR) and (2) to use cost data from the KCR to project the resource needs and cost of expanding and sustaining cancer registration in Uganda, focusing on the recently established Gulu Cancer Registry (GCR) in rural Northern Uganda. Methods We used Centers for Disease Control and Prevention's (CDC's) International Registry Costing Tool ( IntRegCosting Tool ) to estimate the KCR's activity-based cost for 2014. We grouped the registry activities into fixed cost, variable core cost, and variable other cost activities. After a comparison KCR and GCR characteristics, we used the cost of the KCR to project the likely ongoing costs for the new GCR. Results The KCR incurred 42% of its expenditures in fixed cost activities, 40% for variable core cost activities, and the remaining 18% for variable other cost activities. The total cost per case registered was 28,201 Ugandan shillings (approximately US $10 in 2014) to collect and report cases using a combination of passive and active cancer data collection approaches. The GCR performs only active data collection, and covers a much larger area, but serves a smaller population compared to the KCR. Conclusion After identifying many differences between KCR and GCR that could potentially affect the cost of registration, our best estimate is that the GCR, though newer and in a rural area, should require fewer resources than the KCR to sustain operations as a stand-alone entity. The optimal structure of the GCR needs to be determined in the future.

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.