Felicia Marie Knaul’s research while affiliated with Institute for Advanced Study and other places

PURPOSE Although financial hardship in childhood cancer contributes to poor outcomes, no standardized tool to assess its impact exists. Existing methods are heterogeneous and designed using high-income country (HIC), adult perspectives. This project aimed to construct a stakeholder-informed conceptual framework of financial hardship in childhood cancer with global relevancy. METHODS Group concept mapping, a participatory mixed-methods approach, was used. Participants were parents or caregivers of a child with cancer, childhood cancer survivors, and clinical or nonclinical support personnel, fluent in English, Spanish, or Portuguese. A representative panel established a comprehensive list of relevant items. Participants individually sorted these items into concepts and then rated each item for impact using a four-point Likert scale. Multidimensional scaling and hierarchical cluster analysis identified concepts. Descriptive statistics were calculated for impact ratings. RESULTS One fourth (21/80) of participants were parents/caregivers or childhood cancer survivors. Participants worked in clinical (44/80), charity/volunteer (27/80), and other nonclinical (13/80) roles. Of the 41 represented countries, 78.0% (32) were low- and middle-income countries (LMICs). Conceptual themes spanned six distinct clusters: medical, nonmedical, assistance and support, treatment impact, family impact, and caregiver impact. These were distinct in composition compared with an existing framework for adult oncology. Caregiver impact (mean, 3.39) and treatment impact (mean, 3.29) were the highest rated clusters, and impact ratings were higher in LMICs compared with HICs. CONCLUSION We developed a framework for financial hardship in childhood cancer that reflects the voices of stakeholders, including parents and caregivers, from diverse global contexts. The findings lay a foundation for the development and validation of tools to systematically assess financial hardship in families of children with cancer and inform effective policies and interventions.

Introduction The introduction, strict enforcement and recent exit of China’s one-child policy (OCP) resulted in China’s demographical changes, and, alongside its epidemiological transition, disproportionately impacted caregiving needs and demands on women. This study examines women’s caregiving responsibilities in contemporary China and evaluates how the OCP affected them. Methods We simulated the female population aged 25–54 years in 2020 in China and their caregiving responsibilities based on epidemiological and demographic data for women, their parents and parents-in-law, and children under 10. Three different health states were simulated for children and the senior generation: (1) healthy, (2) end of life—decedents and (3) non-decedents in need of palliative care. We combine the care responsibility for senior family members and for children using an aggregate indicator—the Care Responsibility Score (CRS) –to compare the impact of the OCP across different generations of women. Results Approximately 60 million working-age women are living with medium to high levels of care responsibilities (a CRS over 0.8), which is equivalent to caring for a senior family member with palliative care needs without any assistance from siblings. This includes more than one-third of the 156 million women born after the OCP and only 5% of women born before the OCP. Conclusion For women born under the OCP, the additional responsibility generated by a lack of siblings outweighs the benefit of having four dedicated grandparents to support them in raising children.

e24084 Background: The breast cancer (BC) divide persists as a global health and equity challenge. IARC data show that in low human development index (HDI) countries – 1/27 women is diagnosed with BC in their lifetime and 1/48 die from it. In very high HDI countries, BC is more common (1/12), but death is much less so (1/71). Hence, BC generates a substantial burden of serious health-related suffering (SHS) worldwide, and a particularly high and unmet demand for end-of-life care in poorer countries. This research links to three Lancet Commissions (LC): the forthcoming report of LC on BC, follow-up to LC Global Access to Palliative Care (PC), and LC on Cancer and Health Systems. We apply the concept of SHS to delineate and measure PC need for BC. This research is the first to explore disease-specific SHS, building on previous estimates that did not differentiate across cancers. Focusing on BC adds knowledge on: experiences of suffering across the cancer continuum including survivorship; dimensions of suffering specific to women and especially young women; and, differences in symptoms of suffering by stage of diagnosis. Methods: To identify symptoms and dimensions of suffering and to estimate the BC-specific SHS burden, 14 experts, most from the Lancet BC Commission, based in 12 countries of varying HDI, participated in: 1) an online survey on days of SHS and days receiving PC; 2) focus groups to discuss BC need for generalist and specialist PC from time of diagnosis; and 3) structured interviews to refine and deepen data. Results: Stage IV disease and end-of-life account for most PC consultations; no PC consultations were recommended in earlier stages. Experts concluded BC-specific SHS must be differentiated for metastatic disease based on staging, and highlighted symptoms of suffering associated with gender, reproductive age and sexuality ignored in previous work. They estimated an annual average PC need of approximately 175 days for decedents, and over 50 days per year for non-decedents estimated to live 4 years with SHS. Unmet need is high as BC decedents reported receive about 75 days, and non-decedents about 90 days of PC prior to the last year of life. Oncology experts focus on PC being only for final disease stage, yet PC experts stress the need for earlier PC integration into the BC trajectory, including survivorship. Conclusions: With 669,500 deaths in 2023, the burden of BC-specific SHS total is estimated at over 118 million days a year. These numbers represent suffering from pain, dyspnea, fatigue, as well as range of other symptoms that could benefit from PC. Yet, PC is unavailable for the majority in low- and middle-income countries. In addition, some BC symptoms of suffering are under-recognized globally. Health and cancer should prioritize this substantial opportunity to respond to patient, family and caregiver suffering by investing in appropriate PC access and capacity development.

Context Inequities and gaps in palliative care access are a serious impediment to health systems especially in low- and middle-income countries and the accurate measurement of need across health conditions is a critical step to understanding and addressing the issue. Serious Health-related Suffering (SHS) is a novel methodology to measure the palliative care need and was originally developed by The Lancet Commission on Global Access to Palliative Care and Pain Relief. In 2015, the first iteration – SHS 1.0 – was estimated at over 61 million people worldwide experiencing at least 6 billion days of SHS annually as a result of life-limiting and life-threatening conditions. Objectives In this paper, an updated methodology - SHS 2.0 - is presented building on the work of the Lancet Commission and detailing calculations, data requirements, limitations, and assumptions. Methods and Results The updates to the original methodology focus on measuring the number of people who die with (decedents) or live with (non-decedents) SHS in a given year to assess the number of people in need of palliative care across health conditions and populations. Detail on the methodology for measuring the number of days of SHS that was pioneered by the Lancet Commission, is also shared, as this second measure is essential for determining the health system responses that are necessary to address palliative care need and must be a priority for future methodological work on SHS. Conclusions The methodology encompasses opportunities for applying SHS to future policy making assessment of future research priorities particularly in light of the dearth of data from low- and middle-income countries, and sharing of directions for future work to develop SHS 3.0.

Inequities and gaps in palliative care access are a serious impediment to health systems especially low- and middle-income countries and the accurate measurement of need across health conditions is a critical step to understanding and addressing the issue. Serious Health-related Suffering (SHS) is a novel methodology to measure the palliative care need and was originally developed by The Lancet Commission on Global Access to Palliative Care and Pain Relief. In 2015, the first iteration - SHS 1.0 - was estimated at over 61 million people worldwide experiencing at least 6 billion days of SHS annually as a result of life-limiting and life-threatening conditions. In this paper, we present an updated methodology - SHS2.0 - building on the work of the Lancet Commission and detailing calculations, data requirements, limitations, and assumptions. Our updates to the original methodology focus on measuring the number of people who die with (decedents) or live with (non-decedents) SHS in a given year to assess the number of people in need of palliative care across health conditions and populations. We also share detail on the methodology for measuring the number of days of SHS that was pioneered by the Lancet Commission, as this second measure is essential for determining the health system responses that are necessary to address palliative care need and must be a priority for future methodological work on SHS. We discuss the opportunities for applying SHS to future policy making, assess future research priorities particularly in light of the dearth of data from low- and middle-income countries, and share directions for future work to develop SHS 3.0.

Importance Unmet social needs in local populations may hinder the development of targeted cancer control interventions aimed at improving screening utilization and early-stage breast cancer diagnosis to ultimately improve breast cancer survival disparities. Objective To evaluate if (1) city-funded screening mammography is associated with utilization of screening mammography, (2) unmet social needs are associated with utilization of screening mammography, and (3) unmet social needs are associated with later-stage disease at diagnosis. Design, Setting, and Participants This cohort study included patients with stages I-IV invasive ductal or lobular carcinoma treated at an academic medical center (including both an underserved safety-net hospital [SNH] and a National Cancer Institute–designated academic cancer center [ACC]) from 2020 to 2023. Eligible patients were aged 18 years or older and able to consent. Data were analyzed between July 2023 and September 2023. Exposure The Health Leads Social Needs Screening Toolkit, a screening tool that gathers information on the most common social need domains affecting patient health. Main Outcomes and Measures Univariable and multivariable logistic regression was utilized to evaluate the following primary outcomes: (1) routine screening mammography and (2) American Joint Committee on Cancer 8th edition clinical stage at presentation. Results Of the 322 women who completed the Health Leads Social Needs Screening Toolkit, 201 (62%) self-identified as Hispanic, 63 (19%) as non-Hispanic Black, and 63 (19%) as non-Hispanic White. Two hundred fifty-five (76%) patients with access to city-funded screening mammography completed a screening mammogram. Patients who presented to the SNH were more likely to present with late-stage disease compared with early-stage disease (15 of 48 [31%] vs 50 of 274 [18%]; P = .04). On multivariable logistic regression, not completing a screening mammography was associated with having an increasing number of unmet social needs (OR, 0.74; 95% CI, 0.55-0.99; P = .047) and an increasing age at diagnosis (OR, 0.92; 95% CI, 0.89-0.96; P < .001). Moreover, increasing unmet social needs was significantly associated with late-stage diagnosis above and beyond screening mammography (OR, 1.38; 95% CI, 1.01-1.89; P = .04). Conclusions and Relevance In this cohort study, access to screening mammography did not translate to utilization of screening mammography, increasing unmet social needs were significantly associated with lower rates of screening mammography, and those with increasing unmet social needs were more likely to present with late-stage disease. This association transcended recruitment site (SNH vs ACC), indicating that patients in either hospital setting may benefit from unmet social needs screening to overcome access to care barriers associated with late-stage disease at diagnosis.