Pediatric Cancer Care Processes on Financial Distress Screening and Financial Navigation within the National Cancer Institute Community Oncology Research Program

Abstract

Purpose

Cancer-related financial hardship is associated with poor quality of life, risk of household material hardship, and psychological distress for families affected by pediatric cancer. Current processes on financial distress screening and financial navigation across the pediatric NCI Community Oncology Research Program (NCORP) network remain unknown.

Methods

Financial distress screening and financial navigation services among NCORP practices were assessed via two survey items from the 2022 NCORP Landscape Assessment Survey. Practices answering “yes” to “providing oncology care for pediatric patients” were included. Univariable models were used to test associations between practice characteristics and financial screening and financial navigation.

Results

Of the 53 NCORP practices serving pediatric patients with cancer that responded to the survey, 44 (83%) reported routinely conducting financial distress screening. Most practices reported that financial screening is completed by social workers (n=40/44, 91%). A third of practices reported financial screening using a survey completed by patients/caregivers (n =14/44, 32%). Almost all practices (n=51/53, 96%) reported responding to financial needs via a social worker. A third of practices reported having a cancer-specific financial navigator (n=17/53, 32%) or a non-dedicated (not cancer-specific) financial navigator (n=19/53, 36%). Practices that served a proportion of new cancer patients at or above the national average of Hispanic individuals in the United States were as likely to screen for financial distress as practices below the national average (OR =2.42, 95% CI 0.45, 13.03, p=0.30).

Conclusion

Most pediatric NCORP practices report screening for financial distress. Fewer groups offer dedicated cancer-specific financial navigation, and practices vary. Further research is needed to explore the development and implementation of standardized financial distress measures and financial navigation interventions within pediatric cancer care.

Introduction

Cancer-related financial hardship is comprised of three domains: (1) material conditions (i.e. out-of pocket expenses, missed work due to diagnosis/treatments, reduced income); (2) psychological response (i.e., distress due to costs of cancer care); (3) coping behaviors to adapt to the increased expenses during/after cancer care (i.e., delayed or missed medical visits, taking less medications).¹ For families affected by pediatric cancer, financial hardship is associated with poor quality of life, psychological distress (i.e., financial distress), and risk of new or worsening household material hardship (HMH).^2–4 HMH includes the inability to pay for essentials such as food, housing, transportation, utilities.⁵ Prior research has shown certain populations, including nonmarried, low-income, and Hispanic caregivers have an increased risk for financial hardship and HMH.^6–8 Financial hardship due to pediatric cancer care has the potential to impact child health outcomes as a result of parental financial coping behaviors (health care delays, suboptimal treatment adherence).^{9 10} While regular systematic screening for financial hardship is a recommended component of comprehensive pediatric oncology care, standardized approaches are lacking, specifically which construct to screen for (financial hardship, financial distress, or HMH), what screening items to use, and the optimal frequency of screening.¹⁰ Moreover, formal financial navigation services (i.e., financial counselor or navigator dedicated to cancer patients, etc) have yet to be established in pediatric oncology.

The National Cancer Institute (NCI) Community Oncology Research Program (NCORP) network includes community-based and Minority/Underserved Community sites, with the goal to bring cancer clinical trials to people in their communities.¹¹ Financial distress screening and financial navigation practices across the NCORP adult oncology setting were previously described using the results of the 2017 Landscape Assessment.¹² McLouth et al, found that although most practices reported having a financial screening process and half had a cancer-specific financial navigator, practices serving more racial or ethnic minority patients were less likely to screen or have a designated financial navigator. As this prior analysis focused on NCORP practices that serve adults with cancer, financial distress screening and financial navigation practices in pediatric NCORPs remains unknown.

The primary objective of the current study was to describe the prevalence and processes of financial distress screening and navigation at NCORP practices that serve pediatric patients with cancer, using data from pediatric practices that participated in the 2022 Landscape Assessment.¹³

Methods

Design, Settings and Participants

This secondary analysis examined data from the 2022 NCORP Landscape Assessment Survey, which was administered through the Wake Forest NCORP Research Base. The 2022 Landscape Assessment was a cross-sectional survey completed by administrators and research staff at NCORP practices using a survey delivered through the Research Electronic Data Capture (REDCap) platform.¹⁴ Included NCORP practices were hospitals, cancer centers, physician practices, or other institutions where patients and participants were enrolled to contribute to the accrual of NCI-approved clinical trials available to both Community and Minority/Underserved-designated NCORP practices. This study was reviewed and identified as exempt by the Wake Forest University School of Medicine Institutional Review Board.

Measures

The survey included approximately 60 questions regarding infrastructure, services, and the patients served to better understand capacity to conduct research in the NCORP setting. The details of the survey have been previously reported.^15,16 The current analysis included NCORP practices that completed the survey and answered “yes” to the question, “Does your affiliate/subaffiliate provide oncology care for pediatric patients?”

All NCORP practices (adult, pediatric, or mixed [both adult and pediatric]) participating in the Landscape Assessment were asked three items with two potential sub-items measuring financial distress screening and financial navigation processes. The full questions and detailed response options are listed in the Data Supplement.

Financial distress screening processes were assessed with the question: “Does your affiliate/subaffiliate routinely screen oncology patients for financial distress?” Practices that answered “yes” were then asked to select the methods used to identify financial needs. If a practice reported using a survey completed by patients to screen for financial needs, they were asked to report how the surveys were completed and the type of screening tool used.

Financial navigation services provided by NCORP practices were assessed with one item: “How does your affiliate/subaffiliate respond to oncology patients who have financial needs?” Options included a dedicated financial navigator or counselor who serves oncology patients, financial navigator that is not dedicated to oncology patients (e.g., an individual that serves an entire hospital or select departments), social worker, billing staff, outside counseling, or case management service.

Additionally, for practices that reported providing oncology care for pediatric patients, financial navigation specifically offered by a Pediatric Oncology Program was separately measured as an option for the item: “Which of the following services are provided on site at your affiliate/subaffiliate by your Pediatric Oncology Program?”

Practice group characteristics were also collected with survey items and included the following: geographic location, practice group ownership type, and whether the practice was a Community practice or a designated Minority/Underserved site (serve a patient population comprised of at least 30% racial/ethnic minorities or rural residents).¹⁷ Whether the practice was designated as a NCORP Children’s Oncology Group (COG) affiliate was determined by Cancer Therapy Evaluation Program (CTEP) identification numbers. Other questions focused on socio-demographic characteristics of oncology patients within practices including whether: (a) ≥ 30% patients were insured by Medicaid, and ≥ 30% uninsured, (b) ≥ 30% of new cancer patients identified as racial and/or ethnic minority (calculated as the sum of percentages of Black/African American, Native Asian, Native Hawaiian/Other Pacific Islander, American Indian/Alaskan Native, Multiracial, Hispanic), and (c) ≥ 18% of new cancer patients identified as Hispanic¹⁸ The cutoff percentage of 30% racial and/or ethnic minority was chosen to match the percentage used by the National Cancer Institute to designate practices as Minority/Underserved Community Sites.¹⁹ The cut-off 18% Hispanic was based on the national average of Hispanic individuals in the United States (U.S.) population. ¹⁸ Questions specific to pediatric oncology were also collected, including if the practice had the following qualities: providers with fellowship-training in pediatric oncology, a children’s hospital that treated pediatric oncology patients, or a dedicated pediatric oncology program.

Statistical analysis

Practice characteristic statistics were summarized as mean (standard deviation [SD]) for normally distributed variables, median (range) for nonparametric data, and frequency (%) for categorical responses. Associations between proportion of new cancer patients at or above the national average of Hispanic individuals in the U.S. or proportion with ≥ 30% insured by Medicaid and 1) whether there was routine screening for financial distress; 2) whether there was a dedicated financial navigator; and 3) whether a pediatric oncology program was in place that offered financial navigation were tested by univariable analyses. For all analyses, 2-tailed hypothesis testing was used with p<0.05 interpreted for statistical significance.

Results

A total of 45 of 46 (98%) NCORP community sites responded to the 2022 Landscape Assessment survey, representing 517 discrete clinics (approximately 52%; 517 of approximately >1,000 discrete clinics in NCORP) and 271 practice groups. Of the 271 participating practices, 53 NCORP practices answered yes to serving pediatric patients with cancer. Table 1 describes practice group characteristics of the pediatric practices. Most practices were in the South (n=20, 38%) or Midwest (n = 16, 30%). Over half of practices were owned by large regional/multistate health systems (n = 29, 55%). Twelve practices (23%) were a designated Minority/Underserved Site. Most practices included a children’s hospital (n = 39, 74%) and a dedicated pediatric oncology program (n = 46, 87%). A total of 33 practices (62%) were COG affiliates. Eighteen practices reported serving ≥ 30% new cancer patients insured by Medicaid (35%). A minority of practices (n= 2, 4%) serve ≥ 30% new cancer patients who were uninsured. Twenty-eight practices (53%) served ≥ 30% new cancer patients who were racial and/or ethnic minorities of which 20 practices (38%) served a proportion of Hispanic patients at or above the national average of Hispanic individuals in the U.S. (≥ 18%).¹⁸

Table 1.

Characteristics of Participating National Cancer Institute (NCI) Community Oncology Research Program (NCORP) Practices that Serve Pediatric Patients with Cancer

Pediatric Oncology Practice Group Characteristics	N= 53
Practice group region, n (%)
South	20 (38%)
Midwest	16 (30%)
Northeast	9 (17%)
West	8 (15%)
Practice ownership type, n (%)
Owned by large regional/multistate health system	29 (55%)
Other (HMO/payer, publicly or university owned)	14 (26%)
Independently owned	10 (19%)
Designated Minority/Underserved Community Site, n (%)	12 (23%)
Pediatric oncology providers (fellowship-trained in pediatric oncology), n (%)	45 (85%)
Number of pediatric oncology providers, median (IQR)	4 (2–6)
Includes children’s hospital treating pediatric oncology patients, n (%)	39 (74%)
Includes dedicated pediatric oncology program, n (%)	46 (87%)
Designated as a Children’s Oncology Group affiliate, n (%)	33 (62%)
Characteristics of Oncology Patients within Practices
≥ 30% New Cancer Patients on Medicaid, n (%)	18 (35%)
≥ 30% New Cancer Patients Uninsured, n (%)	2 (4%)
≥ 30% of New Cancer Patients are Racial and Ethnic Minority, n (%)	28 (53%)
≥ 18% of New Cancer Patients are Hispanic, n (%)	20 (38%)

Abbreviations: HMO denotes health maintenance organization; IQR denotes interquartile range

Results for financial distress screening processes and financial navigation services that serve pediatric patients with cancer are included in Table 2. While 44 of 53 pediatric practices (83%) reported routinely conducting financial distress screening, most screened using a general distress thermometer survey (n=11/14, 78%)²⁰ with only two practices reportedly using the COmprehensive Score for financial Toxicity (COST) measure, ^21,22 completed by parent/caregiver. The surveys were mostly completed by paper during appointments (n=11/14, 78%).

Table 2.

Financial Distress Screening and Financial Navigation Services

Financial Distress Screening	n (%)
Routinely screen for financial distress	44 (83%)
Methods used to screen:
Medical team	19 (43%)
Survey by patients	14 (32%)
If yes, Method of Survey Completion
Electronic before appointment	7 (50%)
Paper during appointment	11 (78%)
Electronic during appointment	3 (21%)
If yes, Type of survey used for financial screening
Distress thermometer	11 (78%)
Single question screening	1 (7%)
COST	2 (14%)
Other (FPL & MFA guidelines)	1 (7%)
Social worker	40 (91%)
Physician referral	13 (30%)
Financial counselor	4 (9%)
Financial Navigation Services
Financial navigator or counselor dedicated to patients with cancer	17 (32%)
Financial navigator or counselor not dedicated to patients with cancer	19 (36%)
Social worker	51 (96%)
Billing staff	22 (42%)
Referred to outside counseling or case management service	16 (30%)
Other	3 (6%)

Abbreviations: FPL denotes federal poverty level; MFA denotes medical financial assistance

The majority of practices that serve pediatric patients reported having dedicated pediatric oncology social workers (n=50/53, 94%). Of the practices that reported screening for financial distress, most relied on social workers to screen (n=40/44, 91%). Most pediatric NCORP practices also reported responding to financial needs of oncology patients/caregivers via social workers (n=51/53, 96%).

A third of practices reported having a dedicated cancer-specific financial navigator for oncology patients (n=17/53, 32%) or a financial navigator not dedicated to oncology patients (n=19/53, 36%). Of the 46 practices that reported a dedicated Pediatric Oncology program, 32 practices (60%) reported that they provided financial navigation (Figure 1).

Figure 1.

Financial navigation services provided by NCORP pediatric practices

Although multiple characteristics (outlined in statistical analysis) were examined for associations with 1) screening for financial distress; 2) whether there was a dedicated financial navigator; and 3) presence of a pediatric oncology program that offered financial navigation specifically for pediatric patients with cancer, most were not statistically significant. In Table 3, we present the estimates for the univariable models showing the differences in financial distress screening and financial navigation services between practices that served new cancer patients at or above the national average of Hispanic individuals in the U.S. and those below the national average. Among practices that reported having a dedicated pediatric oncology program (n=46), the differences in financial navigation offered by pediatric oncology programs based on the proportion of new cancer patients identifying as Hispanic are described in Table 4. Practices that serve new cancer patients at or above the national average of Hispanic individuals in the U.S. were as likely to screen for financial distress (OR =2.42, 95% CI 0.45, 13.03, p=0.30) as those below the national average.

Table 3.

Financial distress screening and navigation services by proportion of new patients who identify as Hispanic among NCORP practices serving pediatric patients with cancer (n=53)

			Univariate Models
	≥ 18% New Cancer Patients Hispanic, n (%)		Odds Ratio (95% CI)*	p-value
Outcome	Yes 20 (38%)	No 33 (62%)
Screen for financial distress, n (%)	18 (90%)	26 (79%)	2.42 (0.45, 13.03)	0.30
Financial navigator or counselor dedicated to patients with cancer, n (%)	7 (35%)	10 (30%)	1.24 (0.38, 4.04)	0.73

^*Ref=<18% New Cancer Patients Hispanic

Abbreviations: CI denotes confidence interval

Table 4.

Financial navigation by proportion of new patients who identify as Hispanic among NCORP practices with dedicated pediatric oncology programs (n =46)

			Univariate Models
	≥ 18% New Cancer Patients Hispanic, n (%)		Odds Ratio (95% CI)*	p-value
Has pediatric oncology program, (n=46), n (%)	Yes 20 (43%)	No 26 (57%)
Outcome:
Pediatric oncology program that offers financial navigation , n (%)	12 (60%)	20 (77%)	0.45 (0.13, 1.62)	0.22

^*Ref = <18% New Cancer Patients Hispanic

Abbreviations: CI denotes confidence interval

Practices serving < 30% new cancer patients insured by Medicaid were more likely to have a financial navigator (OR= 6.00, CI 1.19, 30.17, p=0.03) than practices serving >=30% new cancer patients insured by Medicaid (Table 5). Of the 18 practices serving >=30% new cancer patients insured by Medicaid, only 2 (11%) reported having a financial navigator compared to 15/35 (43%) having a navigator at the practices with <30% Medicaid.

Table 5.

Cancer-specific financial navigation by proportion of new patients insured by Medicaid

			Univariate Models
	≥ 30% New Cancer Patients insured by Medicaid, n (%)		Odds Ratio (95% CI)*	p-value
Outcome	Yes 18 (34%)	No 35 (66%)
Financial navigator or counselor dedicated to patients with cancer, n (%)	2 (11%)	15 (43%)	6.00 (1.19, 30.17)	0.03

^*Ref=<30% New Cancer Patients insured by Medicaid

Abbreviations: CI denotes confidence interval

Discussion

We describe financial distress screening and financial navigation provided by NCORP practices that serve pediatric patients with cancer. Overall, the majority of pediatric NCORP practices reported screening for financial distress and providing financial navigation. However, financial distress screening processes varied widely, and cancer-specific financial navigators were only provided by a third of pediatric practices.

We found several distinctions when comparing these data to the 2017 Landscape Assessment description of financial screening and financial navigation across adult NCORP practices.¹² A higher percentage of pediatric practices reported screening for financial distress in 2022 than adult practices in 2017. The higher percentage of screening in pediatrics in 2022 may reflect increased recognition of the potential for financial distress.²³ However, few practices reported use of a validated screener for financial distress. The distress thermometer, though helpful, is not an effective strategy to identify financial distress.²⁴ Additionally, fewer pediatric practices reported having a financial navigator dedicated to oncology patients than previously reported in the adult NCORP practices, suggesting that resources to respond to screening for financial distress may not be as established or universally available in pediatric oncology settings. Pediatric practices also reported that the most common method of screening for financial distress and providing navigation was through a social worker. In adult practices, reporting of this approach is less common – more often, adult oncology relied on screening procedures that leveraged technology²⁵ and on cancer specific financial counselors or navigators to provide navigation and other support.^12,26

While financial navigation is within the scope of clinical social work, emerging data supports the need for financial navigators purposely trained to address cancer-specific financial hardship.^27–29 In a national survey of pediatric oncology social workers, 58% reported that systematic financial hardship screening was conducted at their institutions upon initial cancer diagnosis, however, fewer continued to screen during treatment.³⁰ In another survey study of frontline oncology support personnel with the majority of participants being social workers, only 15% of participants felt that there were sufficient resources for their patients’ financial needs, and many reported the need for more financial navigators.³¹ One pilot study of a financial-legal navigation intervention for pediatric, adolescent, and young adult patients with cancer implemented an interdisciplinary team of clinicians, social workers, financial navigators, and lawyers to address financial toxicity.³² This group demonstrated feasibility of study processes, financial navigation and a future full-scale trial, and signals of improved COST scores.³² Screening and addressing financial hardship in pediatric cancer care requires a collaborative and interdisciplinary approach, including both social workers and financial navigators.

The findings in this report highlight both an opportunity and a gap. As the majority of pediatric oncology NCORP practices conducted financial distress screening, opportunities exist for research to improve financial distress screening processes, screening measures, and financial navigation for families who screen positive. Among practices that used a standardized approach, the most commonly utilized screening tool was the National Comprehensive Cancer Network (NCCN) distress thermometer. This tool measures distress in cancer patients caused by various concerns, including finances, insurance, access to food and medicine, but it is not specific to financial distress.^20,24 Only two programs reported using a measure specifically designed to measure financial hardship (which includes financial distress)^1,9 - the COST measure.^21,22 This measure was developed and validated in adult patients with advanced cancer and their caregivers,³³ but has not been validated for use in caregivers of pediatric patients with cancer. None of the practices included in this analysis utilized the Personal Financial Wellness Scale (PFWS, formerly referred to as InCharge), ³⁴ which is also a validated measure of financial distress that has been used in cancer patients and in the general population.³⁵ Although the COST and PFWS measures have been used to measure financial toxicity or financial burden in the pediatric cancer population,^32,36,37 lack of a pediatric-specific financial distress measure and thresholds to assign risk categories likely contributes to the lack of standardized formal screening methods across NCORP practices serving pediatric patients. Development of standardized pediatric financial distress and hardship measures should include an efficient, succinct screening measure in clinical practice among community settings.³⁸ Positive screens could then warrant a more detailed assessment that is adapted to the specific needs of the individual families.

Although previous observations have demonstrated increased financial hardship in Hispanic caregivers of pediatric patients with cancer,⁶ the current study identified no differences between financial screening or financial navigation services in practices that treat more Hispanic patients compared with fewer. There appears to be equal access to financial distress screening for practices that serve a higher proportion of Hispanic patients. This is in contrast to adult NCORP practices with ≥ 30% racial and/or ethnic minority cancer patient composition being less likely to screen for financial concerns or have a dedicated financial navigator or counselor than practices with < 30% racial and/or ethnic minority cancer patients.¹² Although this is encouraging, equitable access and uptake of these services is not known, nor is the impact of these services on patient outcomes from this analysis and overall, improvement is needed across all populations. Given that Hispanic patients may experience more financial burdens and distress, equitable access would suggest increased financial screening at these institutions should be the expectation.

Another important finding from this study was the observed disparity in access to cancer-specific financial navigators at practices serving a higher proportion of new cancer patients insured by Medicaid. No difference in screening or access to a cancer-specific financial navigator was found in adult NCORP practices serving higher vs lower proportions of new patients with Medicaid or dual Medicaid/Medicare in the 2017 Landscape Assessment.¹² This finding may reflect less access to cancer-specific resources at pediatric NCORP practices serving higher proportion of new cancer patients insured by Medicaid. This population would likely benefit greatly from dedicated financial navigation, having been shown to be more likely to report household material hardship³⁹ and high financial toxicity.⁴⁰ In particular, practices located in states without Medicaid expansion, where a median income limit of approximately 35% of the Federal Poverty Level is required to qualify for Medicaid, may be a priority for financial navigation interventions.⁴¹ As financial navigation continues to evolve in cancer care, equitable access to future interventions starting with the initial planning and development phases must be considered.

Limitations of this study include that the services provided by NCORP practices may not be reflective of the national pediatric oncology practices. It was also noted that not all COG NCORP practices participated, with a response rate of 33 out of 50 known COG NCORP affiliates (66%). Finally, the Landscape Assessment was completed through self-report, and the accuracy of the screening or navigation services were not objectively assessed.

Despite these limitations, this study informs future opportunities to refine financial distress screening and navigation processes across the pediatric NCORP network. Identifying and addressing financial distress faced by families during pediatric cancer care and ensuring timely access to resources and support may help mitigate the long-term consequences of financial hardship.^1,9,10 Financial hardship has been shown to impact long-term cancer outcomes and quality of life.^42,43 Therefore, there is critical need to optimize financial distress screening and navigation during pediatric cancer care to improve cancer outcomes. The pediatric NCORP network provides an ideal setting to investigate developing sustainable and generalizable interventions to target financial distress for diverse populations.⁴⁴

Conclusions

Though most pediatric NCORP practices reported assessing financial distress; screening methods vary across practices, suggesting that a standardized measure of financial distress may be beneficial. Furthermore, while most pediatric practices reported offering financial navigation services, few had dedicated financial navigators and counselors. Further research is needed to explore the development and implementation of standardized financial distress measures and financial navigation interventions within pediatric cancer care.

Context Summary.

• Key objective: To understand current financial distress screening and navigation processes within the pediatric National Cancer Institute Community Oncology Research Program (NCORP).

• Knowledge generated: Most pediatric NCORP practices are screening for financial distress, but screening methods vary widely across practices. Most completed screening via social workers. Most practices reported offering financial navigation, but only a third of practices had formal, cancer-specific financial navigators.

• Relevance: There are opportunities to improve and standardize financial screening and access to cancer-specific financial navigation at practices that serve pediatric patients with cancer.