Defining Practice Capacity for Cancer Care Delivery to Adolescents and Young Adults in the Community Setting: 2022 Landscape Assessment Results.

Background: Adolescents and young adults (AYAs) commonly receive cancer care in the community setting, but the availability of treatment options, resources, and support services for this population is not well known. The National Cancer Institute Community Oncology Research Program (NCORP) funds a network of practices whose mission is to increase access to cancer care and clinical trials in the community setting. We describe our interdisciplinary methodological approach to identify and characterize NCORP practices where AYAs receive cancer care. Methods: NCORP practices completed a cross-sectional Landscape Assessment to describe resources and practice characteristics. We established an interdisciplinary team of stakeholders to analyze the Landscape Assessment data relating to AYAs. Through an iterative process, we assessed NCORP practice responses to questions assessing AYA cancer care capacity, determined a threshold to define practices treating AYAs, and characterized these practices. Results: We determined that practices provide cancer care to AYAs if the following criteria were met: (1) endorsed having an AYA program (n = 20), (2) AYAs comprised ≥5% of annual cancer cases (n = 55), or (3) the practice treated ≥50 AYA cancer cases annually (n = 70). Of 271 NCORP practices, 100 (37%) met any criteria, whereas 87 (32%) did not; 84 (31%) could not be classified due to missing or unknown data. Conclusion: Using an interdisciplinary process, we define practices that treat AYAs in the community. We posit a uniform approach to examine resources and practice capacity for AYAs receiving cancer care across the United States to guide future AYA-focused cancer care delivery research development.

Socioeconomic Status and Chronic Health Conditions in Asian Survivors of Adolescent and Young Adult Cancers.

Purpose: While there are known disparities in socioeconomic status (SES) and health outcomes among racially and ethnically minoritized adolescent and young adult (AYA; ages 15-39 years at diagnosis) cancer survivors compared with White survivors, outcomes in the Asian survivor population are understudied. To better understand the association of an AYA cancer diagnosis with SES and health outcomes within a minoritized population, the current study makes comparisons between individuals of the same race or ethnicity with and without a history of AYA cancer. Methods: Non-Hispanic, Asian AYA cancer survivors and non-Hispanic, Asian age- and sex-matched controls were identified from self-reported data in the National Health Interview Survey (2009-2020). Prevalence of chronic health conditions and socioeconomic factors were compared between groups using chi-square tests. Odds of chronic conditions by SES factors were determined within and between survivors and controls using logistic regression methods. Results: One hundred and thirty-one survivors and 1310 controls were included. Survivors were less likely to be married compared with controls; however, there were no differences in other SES factors examined. Survivors had higher odds of at least one chronic condition diagnosis (odds ratio = 4.17, p < 0.001) compared with controls. Of the chronic conditions assessed, survivors had higher odds of arthritis, pulmonary disease, and hypertension compared with controls. Conclusions: Asian AYA cancer survivors are at increased risk of chronic health conditions compared with Asian individuals without a cancer history. Culturally adapted targeted interventions are needed to improve health outcomes for this population.

Risk of chronic health conditions in lesbian, gay, and bisexual survivors of adolescent and young adult cancers.

BACKGROUND: In the general population, individuals with minoritized sexual orientation and gender identity have a higher burden of chronic health conditions than heterosexual individuals. However, the extent to which sexual orientation is associated with excess burden of chronic conditions in adolescent and young adult cancer survivors (AYACS) is unknown. METHODS: Lesbian, gay, and bisexual (LGB) AYACSs, LGB individuals without a history of cancer, and heterosexual AYACSs were identified by self-reported data from the cross-sectional National Health Interview Survey (2013-2020). Socioeconomic factors and the prevalence of chronic health conditions were compared between groups using χ2 tests. Logistic regression methods were used to determine the odds of chronic conditions by socioeconomic factors within and between survivor and comparison groups. RESULTS: One hundred seventy LGB cancer survivors, 1700 LGB individuals without a history of cancer, and 1700 heterosexual cancer survivors were included. Compared with heterosexual survivors, LGB survivors were less likely to be married (p = .001) and more likely to have never been married (p < .001). LGB survivors were more likely to have incomes between 100% and 200% of the federal poverty level than LGB individuals without a history of cancer (p = .012) and heterosexual survivors (p = .021) and were less likely to report incomes >200% the federal poverty level. LGB survivors had higher odds of chronic health conditions than LGB individuals without a history of cancer (odds ratio, 2.45; p < .001) and heterosexual survivors (odds ratio, 2.16; p = .003). CONCLUSIONS: LGB AYACSs are at increased risk of having chronic health conditions compared with both LGB individuals without a history of cancer and heterosexual AYACSs.

Association of Preexisting Heart Failure With Outcomes in Older Patients With Diffuse Large B-Cell Lymphoma.

Importance: Anthracycline-containing regimens are highly effective for diffuse large B-cell lymphoma (DLBCL); however, patients with preexisting heart failure (HF) may be less likely to receive anthracyclines and may be at higher risk of lymphoma mortality. Objective: To assess the prevalence of preexisting HF in older patients with DLBCL and its association with treatment patterns and outcomes. Design, Setting, and Participants: This longitudinal cohort study used data from the Surveillance, Epidemiology, and End Results (SEER)-Medicare registry from 1999 to 2016. The SEER registry is a system of population-based cancer registries, capturing more than 25% of the US population. Linkage to Medicare offers additional information from billing claims. This study included individuals 65 years and older with newly diagnosed DLBCL from 2000 to 2015 with Medicare Part A or B continuously in the year prior to lymphoma diagnosis. Data were analyzed from September 2020 to December 2022. Exposures: Preexisting HF in the year prior to DLBCL diagnosis ascertained from billing codes required one of the following: (1) 1 primary inpatient discharge diagnosis, (2) 2 outpatient diagnoses, (3) 3 secondary inpatient discharge diagnoses, (4) 3 emergency department diagnoses, or (5) 2 secondary inpatient discharge diagnoses plus 1 outpatient diagnosis. Main Outcomes and Measures: The primary outcome was anthracycline-based treatment. The secondary outcomes were (1) cardioprotective medications and (2) cause-specific mortality. The associations between preexisting HF and cancer treatment were estimated using multivariable logistic regression. The associations between preexisting HF and cause-specific mortality were evaluated using cause-specific Cox proportional hazards models with adjustment for comorbidities and cancer treatment. Results: Of 30 728 included patients with DLBCL, 15 474 (50.4%) were female, and the mean (SD) age was 77.8 (7.2) years. Preexisting HF at lymphoma diagnosis was present in 4266 patients (13.9%). Patients with preexisting HF were less likely to be treated with an anthracycline (odds ratio, 0.55; 95% CI, 0.49-0.61). Among patients with preexisting HF who received an anthracycline, dexrazoxane or liposomal doxorubicin were used in 78 of 1119 patients (7.0%). One-year lymphoma mortality was 41.8% (95% CI, 40.5-43.2) with preexisting HF and 29.6% (95% CI, 29.0%-30.1%) without preexisting HF. Preexisting HF was associated with higher lymphoma mortality in models adjusting for baseline and time-varying treatment factors (hazard ratio, 1.24; 95% CI, 1.18-1.31). Conclusions and Relevance: In this study, preexisting HF in patients with newly diagnosed DLBCL was common and was associated with lower use of anthracyclines and lower use of any chemotherapy. Trials are needed for this high-risk population.

Cost of Cancer in Adolescents and Young Adults in the United States: Results of the 2021 Report by Deloitte Access Economics, Commissioned by Teen Cancer America.

PURPOSE: The purpose of this report, commissioned by Teen Cancer America and performed by Deloitte Access Economics in 2021, was to estimate the total costs incurred by adolescent and young adults (AYAs) after cancer diagnosis in the United States (US) over their life course. METHODS: The incidence of cancer in 2019 among AYAs age 15-39 years was estimated from the US Cancer Statistics Public Use Database, and relative survival was projected from the Surveillance, Epidemiology, and End Results Program. Cost domains included health system, productivity, and well-being costs. Components were estimated with published literature and pooled data from the Medical Expenditure Panel Survey from 2008 to 2012 and inflated to 2019 dollars. RESULTS: The economic and human costs of cancer in AYAs are substantial-$23.5 billion overall, corresponding to $259,324 per person over the lifetime. The majority of costs are borne by AYA cancer survivors themselves in the form of lost productivity, loss of well-being, and loss of life. CONCLUSION: These findings underscore the need to address the burden of cancer in AYAs through targeted programs for AYAs, such as financial navigation and health insurance literacy interventions, as well as local and national policy initiatives to address access to and enhanced coverage for clinical trials participation, fertility services, and survivorship care.

Excess risk of chronic health conditions in Hispanic survivors of adolescent and young adult cancers.

PURPOSE: There is a growing population of survivors of adolescent and young adult (AYA) cancers (age 15-39 years at diagnosis). Studies in AYA cancer survivors have identified racial and ethnic disparities in long-term outcomes. To understand the extent to which a cancer diagnosis exacerbates pre-existent health disparities within a minoritized population, comparisons should be made to those of the same race or ethnicity without a cancer history. METHODS: Self-reported data from the National Health Interview Survey (2009-2018) were used to identify Hispanic AYA cancer survivors and Hispanic age- and sex-matched controls. SES factors (marital status, income, education, insurance) and prevalence of chronic health conditions were compared between groups using chi-square tests. The log-odds of chronic conditions were modeled by survey-weighted logistic regression with relation to age at survey, sex, marital status, education, family income, and cancer group (control versus cancer), together with interactions between each variable and cancer group (survivors vs. controls). RESULTS: Five hundred thirty-nine survivors and 5390 controls were included. Compared with controls, survivors were less likely to be married and have family income > 45 K/year, and more likely to be insured and have completed some college. Survivors had higher odds than controls of chronic health conditions (odds ratio (OR): 7.39, p < 0.001 for at least 1 and OR: 4.78, p < 0.001 for 3 or more) including cardiovascular disease, diabetes, and hypertension. Female sex, higher educational attainment, and public insurance were each associated with increased odds of chronic conditions in Hispanic AYA survivors. CONCLUSIONS: An AYA cancer diagnosis is associated with poor SES outcomes and increased odds of comorbidities within the Hispanic population. IMPLICATIONS FOR CANCER SURVIVORS: Cancer history can exacerbate underlying health disparities. Screening for chronic conditions is especially important in minoritized populations.

Evaluating the role of financial navigation in alleviating financial distress among young adults with a history of blood cancer: A hybrid type 2 randomized effectiveness-implementation design.

BACKGROUND: Young adulthood (YA) is a complex phase of life, marked by key developmental goals, including educational and vocational attainment, housing independence, maintenance of social relationships, and financial stability. A cancer diagnosis during, or prior to, this phase of life can compromise the achievement of these milestones. Studies of adults with cancer have demonstrated that >70% report experiencing financial side-effects, which are associated with increased mortality, diminished health-related quality of life, and forgone medical care. The goal of this project is to evaluate financial distress of YA-aged survivors of blood cancers, and the impact of financial navigation on alleviating this distress. METHODS: This three-arm, multi-site, hybrid type 2 randomized effectiveness-implementation design (EID) study will be conducted through remote consent, remote data capture and telephone-based/virtual financial navigation. Participants will be aged 18-39, and more than three years from their blood cancer diagnosis. In this six-month intervention, the study will compare the primary outcome of financial distress in three arms: (1) usual care (2) participant-initiated, ad hoc navigation, and (3) study-directed proactive navigation. The study will be evaluated via the five-component Reach, Effectiveness, Adoption, Implementation, Maintenance (RE-AIM) outcome strategy with a mixed-methods approach through quantitative assessment of participant-reported financial distress using the Personal Financial Wellness Scale™, as the primary outcome measure, and qualitative assessment through interviews. CONCLUSION: The study will address many unanswered questions regarding financial navigation within the YA survivor population and will inform the most successful strategies to mitigate financial distress in this vulnerable population.

Family Spillover Effects: Are Economic Evaluations Misrepresenting the Value of Healthcare Interventions to Society?

The societal impacts of health interventions are seldom incorporated into health economic evaluations, including the impact that illness can have on informal or unpaid caregivers and other family members (i.e., "family spillover effects"). Previous research has demonstrated that by excluding family spillover effects, the value of health interventions may be underestimated on average. In this commentary, we discuss how the inclusion of spillover effects influences how we value interventions and, given the extent to which caregiver/family effects are largely not captured or known, propose ways in which these data could be more systematically collected or estimated and used by researchers. These recommendations include prioritizing data collection alongside clinical trials and patient registries, engaging expert opinion panels, and developing mapping algorithms for estimating caregiver/family utility values from non-preference-based caregiver health-related quality-of-life measures and/or from patient preference-based measures.

Establishing Cost-Effective Allocation of Proton Therapy for Patients With Mediastinal Hodgkin Lymphoma.

PURPOSE: For curative treatment of Hodgkin lymphoma, radiation therapy benefit must be weighed against toxicity. Although more costly, proton radiation therapy reduces dose to healthy tissue, potentially improving the therapeutic ratio compared with photons. We sought to determine the cost-effectiveness of proton versus photon therapy for mediastinal Hodgkin lymphoma (MHL) based on reduced heart disease. METHODS AND MATERIALS: Our model approach was 2-fold: (1) Use patient-level dosimetric information for a cost-effectiveness analysis using a Markov cohort model. (2) Use population-based data to develop guidelines for policymakers to determine thresholds of proton therapy favorability for a given photon dose. The HD14 trial informed relapse risk; coronary heart disease risk was informed by the Framingham risk calculator modified by the mean heart dose (MHD) from radiation. Sensitivity analyses assessed model robustness and identified the most influential model assumptions. A 30-year-old adult with MHL was the base case using 30.6-Gy proton therapy versus photon intensity modulated radiation therapy. RESULTS: Proton therapy was not cost-effective in the base case for male ($129,000/ quality-adjusted life years [QALYs]) or female patients ($196,000/QALY). A 5-Gy MHD decrease was associated with proton therapy incremental cost-effectiveness ratio <$100,000/QALY in 40% of scenarios. The hazard ratio associating MHD and heart disease was the most influential clinical parameter. CONCLUSIONS: Proton therapy may be cost-effective a select minority of patients with MHL based on age, sex, and MHD reduction. We present guidance for clinicians using MHD to aid decision-making for radiation therapy modality.

Assessment of patient navigation programs for breast cancer patients across the city of Boston.

PURPOSE: Healthcare systems contribute to disparities in breast cancer outcomes. Patient navigation is a widely cited system-based approach to improve outcomes among populations at risk for delays in care. Patient navigation programs exist in all major Boston hospitals, yet disparities in outcomes persist. The objective of this study was to conduct a baseline assessment of navigation processes at six Boston hospitals that provide breast cancer care in preparation for an implementation trial of standardized navigation across the city. METHODS: We conducted a mixed methods study in six hospitals that provide treatment to breast cancer patients in Boston. We administered a web-based survey to clinical champions (n = 7) across six sites to collect information about the structure of navigation programs. We then conducted in-person workflow assessments at each site using a semi-structured interview guide to understand site-specific implementation processes for patient navigation programs. The target population included administrators, supervisors, and patient navigators who provided breast cancer treatment-focused care. RESULTS: All sites offered patient navigation services to their patients undergoing treatment for breast cancer. We identified wide heterogeneity in terms of how programs were funded/resourced, which patients were targeted for navigation, the type of services provided, and the continuity of those services relative to the patient's cancer treatment. CONCLUSIONS: The operationalization of patient navigation varies widely across hospitals especially in relation to three core principles in patient navigation: providing patient support across the care continuum, targeting services to those patients most likely to experience delays in care, and systematically screening for and addressing patients' health-related social needs. Gaps in navigation across the care continuum present opportunities for intervention. TRIAL REGISTRATION: Clinical Trial Registration Number NCT03514433, 5/2/2018.

Development and validation of a prediction model for 1-year mortality among older adults with Hodgkin Lymphoma who receive dose-intense chemotherapy.

BACKGROUND: Older adults with Hodgkin Lymphoma (HL) have poorer outcomes than younger patients. There are little data about which baseline patient and disease factors inform prognosis among older patients. We sought to create a prediction model for 1-year mortality among older patients with new HL who received dose-intense chemotherapy. METHODS: We included adults ≥65 years old with a new diagnosis of classical HL between 2000-2013 from the Surveillance, Epidemiology, and End Results (SEER)-Medicare dataset who received full-regimen chemotherapy. Through a non-random 2:1 split, we created development and validation cohorts. Multiple imputation was used for missing data. Using stepwise selection and logistic regression, we identified predictive variables for 1-year mortality. The model was applied to the validation cohort. A final model was then fit in the full cohort. RESULTS: We included 1315 patients. In the development cohort (n = 813), we identified significant predictors of 1-year mortality including age, Charlson comorbidity index (CCI), B symptoms at diagnosis, and advanced stage at diagnosis. The c-statistic was 0.70. When this model was applied to the validation cohort (n = 502), the c-statistic was 0.65. Predictors of 1-year mortality in the final model were CCI (OR = 1.41), B symptoms (OR = 1.54), advanced stage (OR = 1.44), and older age at diagnosis (OR = 1.33). CONCLUSION: We present a prediction model for use among older adults with HL who receive intensive chemotherapy. We identify risk factors for death within 1 year of diagnosis. Future work will build upon prognostication and shared decision-making after diagnosis for this population.

Assessment of patients' understanding of and adherence to oral anticancer medication (OAM): Results of a cross-sectional institutional pilot study.

BACKGROUND: Although oral anticancer medications (OAM) provide opportunity for treatment at home, challenges include prescription filling, monitoring side effects, safe handling, and adherence. We assessed understanding of and adherence to OAM in vulnerable patients. METHODS: This 2018 pilot study defined vulnerable patients based on Chinese language, older age (≥65 years), and subsidized insurance. All participants had a cancer diagnosis and were taking an OAM filled through the hospital's specialty pharmacy. Participants reported on OAM taking (days per week, times per day, special instructions) and handling (handling, storage, disposal). The specialty pharmacist classified patient-reported responses about OAM taking and handling as adequate or inadequate. OAM regimens were classified by complexity. RESULTS: Of 61 eligible patients, 55 participated. Mean age was 68 years (standard deviation [SD] = 12) and 53% were female. Patient subgroups were: 27% Chinese, 64% ≥65 years, and 9% subsidized insurance. Forty-nine percent were on frontline therapy and median time on OAM was 1 year (Quartile 1 = 0.4, Quartile 3 = 1.7). Adequacy of OAM taking (30%) and handling (15%) were low; 15% had adequacy in both. Adequacy of OAM taking and handling did not vary by patient subgroup or regimen complexity. Mean patient-reported adherence was high (5.4, SD = 1, possible range 1-6) and did not vary by adequacy of OAM taking or handling. CONCLUSIONS: Understanding of OAM taking and handling in this group of vulnerable patients was low and did not align with patient-reported adherence. Future interventions should ensure that patients understand how to safely take and handle OAM, thereby optimizing their therapeutic potential.

First-line treatment in older patients with Hodgkin lymphoma: a Surveillance, Epidemiology, and End Results (SEER)-Medicare population-based study.

While Hodgkin lymphoma (HL) is highly curable in younger patients, older patients have higher relapse and death rates, which may reflect age-related factors, distinct disease biology and/or treatment decisions. We described the association between patient, disease and geographic factors and first-line treatment in older patients (≥65 years) with incident HL using Surveillance, Epidemiology, and End Results (SEER)-Medicare data from 1999 to 2014 (n = 2825). First-line treatment initiated at ≤4 months after diagnosis was categorised as: full chemotherapy regimen (n = 699, 24·7%); partial chemotherapy regimen (n = 1016, 36·0%); single chemotherapy agent or radiotherapy (n = 382, 13·5%); and no treatment (n = 728, 25·8%). Among the fully treated, ABVD [doxorubicin (Adriamycin), bleomycin, vinblastine, dacarbazine]/AVD was most common (n = 635, 90·8%). Adjusted multinomial logistic regression identified factors associated with treatment. Older age, Medicaid dual eligibility, not married, frailty, cardiac comorbidity, prior cancer, earlier diagnosis date, histology, advanced disease Stage, B symptoms and South region were independently associated with increased odds of not receiving full chemotherapy regimens. In conclusion, we found variability in first-line HL treatment for older patients. Treatment differences by Medicaid and region may indicate disparities. Even after adjusting for frailty and cardiac comorbidity, age was associated with treatment, suggesting factors such as end-of-life care or shared decision-making may influence treatment in older patients.

Assessment of health-related quality of life among adults hospitalized with sickle cell disease vaso-occlusive crisis.

Sickle cell disease (SCD) is characterized by painful vaso-occlusive crises (VOCs). Self-reported pain intensity is often assessed with the Numeric Rating Scale (NRS), whereas newer patient-reported outcome measures (PROMs) assess multidimensional pain in SCD. We describe pain experiences among hospitalized adults with VOCs, using 2 PROMs: the Patient-Reported Outcomes Measurement Information System (PROMIS) Global Health and the Adult Sickle Cell Quality of Life Measurement System (ASCQ-Me). Adults with SCD hospitalized with VOCs at 2 academic centers in Boston, Massachusetts, from April 2016 to October 2017 were eligible. Participants completed the NRS and PROMs at admission and 7 days postdischarge. PROM scores were described and compared with population norms. Length of stay (LOS) and 30-day readmission rates were assessed. Forty-two (96%) of 44 eligible patients consented and completed admission assessments. Mean age was 30.2 years (standard deviation, 9.1), 60% were women, 76% were non-Hispanic black, and 64% had hemoglobin SS. Twenty-seven participants (64%) completed postdischarge assessments. Sixty percent had ≥4 VOCs in the last year. Nearly all PROMIS Global Health and ASCQ-Me scores were worse than population norms. NRS and PROMIS Global Physical Health scores improved after discharge, the latter driven principally by improvements in pain. Overall median LOS was 7 days, and 30-day readmission rate was 40.5%. Administration of PROMs among adults with SCD hospitalized for VOCs is feasible and demonstrates participants experienced recurrent, prolonged, and severe VOCs. PROMIS Global and ASCQ-Me scores indicated substantial suffering, and the striking 30-day readmission rate highlights the vulnerability of these patients.

Timeliness of Treatment Initiation in Newly Diagnosed Patients With Breast Cancer.

BACKGROUND: Evidence-based timeliness benchmarks have been established to assess quality of breast cancer care, as delays in treatment are associated with poor clinical outcomes. However, few studies have evaluated how current breast cancer care meets these benchmarks and what factors may delay the timely initiation of treatment. PATIENTS AND METHODS: Demographic and disease characteristics of 377 newly diagnosed patients with breast cancer who initiated treatment at Tufts Medical Center (2009-2015) were extracted from electronic medical records. Time from diagnosis to initial surgery and time from diagnosis to initiation of hormone therapy were estimated with Kaplan-Meier curves. Multivariable regression analysis was used to identify factors associated with treatment delays. Thematic analysis was performed to categorize reasons for delay. RESULTS: Of 319 patients who had surgery recommended as the first treatment, 248 (78%) met the 45-day benchmark (median, 28 days; 25th-75th %, 19-43). After adjusting for potential confounders, multivariable regression analysis revealed that negative hormone receptor status (odds ratio, 3.48; 95% confidence interval, 1.44-8.43) and mastectomy (odds ratio, 4.07; 95% confidence interval, 2.10-8.06) were significantly associated with delays in surgery. Delays were mostly owing to clinical complexity or logistical/financial reasons. Of 241 patients eligible for hormone therapy initiation, 232 (96%) met the 1-year benchmark (median, 147 days; 25th-75th %, 79-217). CONCLUSION: Most patients met timeliness guidelines for surgery and initiation of hormone therapy, although risk factors for delay were identified. Knowledge of reasons for breast cancer treatment delay, including clinical complexity and logistical/financial issues, may allow targeting interventions for patients at greatest risk of care delays.

Parent proxy assessment of sibling quality of life following pediatric hematopoietic cell transplantation.

BACKGROUND: When a child undergoes hematopoietic cell transplantation (HCT), the impact extends to the entire family, including siblings. Assessment of the quality of life (QoL) of siblings is challenged by their general lack of availability for regular assessment by clinical providers. Thus, the use of parent proxy reporting may be useful. Our aim was to describe the QoL of siblings of HCT survivors, as reported by their parents, as well as to identify parent and family factors associated with lower sibling QoL. METHODS: A cross-sectional study was utilized to assess parent-reported QoL of the HCT recipient's sibling (Short Form (SF)-10 Health Survey for Children and the Pediatric Symptom Checklist (PSC)-17). Parent QoL was assessed using the SF-12. Multivariable linear regression was used to explore hypothesized predictors of sibling QoL, including parent QoL, family impact/function (Impact on Family Scale, Family Adaptability and Cohesion Evaluation Scales, IV, and a question asking about financial problems) while adjusting for demographic and HCT characteristics. RESULTS: Ninety-seven siblings (55% males) with a mean age of 12 years (standard deviation [SD] 4 years) were assessed, representing HCT survivors, who were an average of 5 years (SD 4 years) post-HCT. Neither sibling psychosocial (mean 49.84, SD 10.70, p = 0.87) nor physical health scores (mean 51.54, SD 8.42, p = 0.08) differed from norms. Parent proxies reported behavioral/emotional problems (PSC-17 total score > 15) in 24% of siblings. While parental ratings of their own physical health (SF-12 were higher than norms (mean 53.04, SD 8.17, p = 0.0005), mental health scores were lower (mean 45.48, SD 10.45, p < 0.0001). In multivariable analysis, lower parent emotional functioning and adverse family function were associated with lower sibling QoL, as reported by parents. CONCLUSIONS: While proxy-reported QoL of siblings did not differ significantly from normative data, both parent QoL and family function were associated with sibling QoL. Future research is needed to understand how siblings themselves perceive their QoL following HCT.

Standardized activities for lay patient navigators in breast cancer care: Recommendations from a citywide implementation study.

BACKGROUND: There is a need for guidelines on patient navigation activities to promote both the quality of patient navigation and the standards of reimbursement for these services because a lack of reimbursement is a major barrier to the implementation, maintenance, and sustainability of these programs. METHODS: A broad community-based participatory research process was used to identify the needs of patients for navigation. A panel of stakeholders of clinical providers was convened to identify specific activities for navigators to address the needs of patients and providers with the explicit goal of reducing delays in the initiation of cancer treatment and improving adherence to the care plan. RESULTS: Specific activities were identified that could be generalized to all patient navigation programs for care during active cancer management to address the needs of vulnerable communities. CONCLUSIONS: Oncology programs that seek to implement lay patient navigation may benefit from the adoption of these activities for quality monitoring. Such activities are necessary as we consider reimbursement strategies for navigators without clinical training or licensure.

Adolescent and young adult cancer care: Financial hardship and continued uncertainty.

Since 2005, there has been a steady increase in the number of new cancer diagnoses among adolescents and young adults (AYA) in the United States (US), likely due to improved awareness and detection within this age group, as well as the possible contribution of insurance expansion under the Patient Protection and Affordable Care Act. AYAs with cancer remain highly vulnerable financially, a situation that will only worsen with proposed rollbacks in access to and affordability of healthcare. In this review, we will discuss existing aspects of financial hardship and highlight areas of uncertainty, based on the current US political climate.

Cost, Value, and Financial Hardship in Cancer Care: Implications for Pediatric Oncology.

Cancer care in the United States faces a perfect storm: an aging population and expected increased cancer incidence, growing numbers of cancer survivors with ongoing care needs, and continued scientific advancements, offering extraordinary promise at extraordinary cost. How, then, do we as pediatric oncologists engage in the dialogue about cancer cost considerations? The purpose of this article and its accompanying session presented at the 2018 ASCO Annual Meeting is to introduce concepts of cost, value, and financial hardship. In the first section, we will provide an overview of principles of health economics, including components of cost, time horizon consideration, discounting, and methods to calculate incremental cost-effectiveness among therapeutic approaches. We will then introduce the value framework being debated in adult oncology and offer potential opportunities for its application in pediatric oncology. In the second section, we will describe the integration of the cost-effectiveness paradigm in an ongoing pediatric clinical trial, including design and analytic considerations. In the third section, we will shift away from cost to the health care system to cost to the patient, which is also termed "financial toxicity" or "financial hardship," focusing on the ongoing burden of cost on survivors of childhood cancer. Our goal is to provide our readers with the vocabulary and understanding of this complex and often thorny debate so that they can be active participants and informed advocates for their patients.