Abstract
Purpose
Adolescents and young adults (AYAs, ages 15 – 39 years) with cancer are vulnerable to the harmful effects of cancer-related financial hardship. Our objective was to describe financial distress screening and financial navigation across NCI Community Oncology Research Program (NCORP) practices treating AYAs with cancer.
Methods
The 2022 NCORP Landscape Assessment was developed and refined by an expert committee to assess infrastructure and capacity to conduct oncology research. Survey items specific to financial distress screening and cancer-specific financial navigation were compared based on practice and patient characteristics among practices treating AYAs.
Results
A total of 271 NCORP practices (45 of 46 NCORP sites; 517 of 1000+ discrete clinics) responded to the survey April through June 2022. One-hundred practices (37.0%) were characterized as treating AYAs. Most practices reported routinely screening for financial distress (82.0%) via social worker evaluation (57.0%). Financial concerns were addressed via social workers (81.0%), cancer-specific financial navigation (47.0%), billing staff (46.0%), general financial navigation (35.0%), or outside case management (31.0%). A lower proportion of practices with access to cancer-specific financial navigation reported having a dedicated AYA program (10.6% vs 28.3%, OR [95% CI]: 0.30 [0.10, 0.91], p =0.028) or treating >30% of patients insured by Medicaid (6.4% vs 26.4%, OR [95% CI]: 0.19 [0.05, 0.71], p=0.008) compared to those without cancer-specific financial navigation.
Conclusion
Although most NCORP practices treating AYAs reported routinely screening for financial distress, only one-half of practices offer cancer-specific financial navigation. Practices treating a higher percentage of patients at greatest risk for financial hardship have less access to cancer-specific financial navigation. Further research is needed to support expansion of financial navigation services among community oncology practices that treat AYAs.
Introduction
The rising costs of cancer treatment, the additional proportion borne by patients,1 and financial strain of lost income from reduced employment due to cancer care, have led to the increasing prevalence of financial hardship faced by individuals with cancer and their families.2–6 Individuals impacted by cancer-related financial hardship experience material hardships secondary to lost income from cancer care, psychological distress secondary to financial strain (i.e., financial distress), and coping behaviors in response to financial strain (i.e., missing appointments or taking less medications).7 Most frameworks of financial hardship describe at least two components: 1) financial burden from the high costs of cancer care, income loss, and treatment-related costs; and 2) financial distress secondary to the objective financial burden of cancer care.8 While terminology describing cancer-related financial hardship varies across the literature,9 multiple observations have established detrimental consequences of cancer-related financial hardship extending beyond active cancer care and into survivorship with cancer survivors reporting higher out-of-pocket medical costs,1,10,11 annual productivity loss,12,13 and increased financial distress,3,14 compared to individuals without a history of cancer.
In response to the observed harmful effects of cancer-related financial hardship, there is growing recognition of the necessity to screen for cancer-related financial hardship and provide financial navigation as part of comprehensive cancer care. Since 1999, the National Comprehensive Cancer Network (NCCN) has recommended distress screening during adult cancer care including screening for financial distress and providing financial navigation when needs are identified.15 The Standards for Psychosocial Care of Children with Cancer and Their Families also recommend routine assessment of financial hardship during pediatric cancer care.16 Neither the NCCN nor pediatric recommendation include specific guidance on the optimal method or interval for financial screening. Therefore, there is a lack of standardization with variability in if and how oncology practices screen for and respond to financial hardship.17
Adolescents and young adults (AYAs, ages 15 – 39 years) with cancer are vulnerable to the impact of cancer-related financial hardship with over 50% of AYAs with cancer reporting financial hardship. Compared to older adults, AYAs are more likely to report experiencing all domains of cancer-related financial hardship.18 Various factors contribute to this finding including that AYAs often have gaps in medical insurance coverage, less access to financial assets, and decreased work productivity as a result of cancer.19–23 Younger AYAs (ages 15 to 29 years) are also commonly financially dependent on their parents.24 AYAs are often treated in community settings,25,26 where AYAs may be at even greater risk for cancer-related financial hardship as community oncology facilities are more likely to treat populations with other risk factors for financial hardship, including under- or uninsured individuals and those living in rural communities.27–29 For example, one study revealed that a higher proportion of young adults treated at community-based oncology clinics compared to National Cancer Institute (NCI) - designated centers reported financial concerns.30
Given the unique financial needs of AYAs with cancer, and specifically those that are treated in community settings, the objective of this study was to describe financial distress screening and financial navigation in oncology practices that treat AYAs.31 Our secondary objective was to describe proportions of financial distress screening and financial navigation based on practice and patient characteristics. As practices with dedicated pediatric oncology and/or AYA programs may be more attuned to the developmental and psychosocial needs of AYAs with cancer,32–34 we hypothesized that higher proportions of these practices would report routinely screening for financial distress and providing cancer-specific financial navigation.
Methods
Study design and participants
This study was a secondary analysis of data derived from the 2022 NCI Community Oncology Research Program (NCORP) Landscape Assessment Survey.35 The Landscape Assessment Survey is a cross-sectional survey that was distributed via REDCap36 by the Wake Forest NCORP Research Base to NCORP practices. The NCORP network was created in 2014 to provide widespread access to clinical trials to individuals across the United States.37 The NCORP network is comprised of seven research bases, 32 community-sites and 14 Minority/Underserved sites. Practices within these sites include hospitals, cancer centers, physician practices or other institutions serving adult, pediatric or both adult and pediatric patients with cancer across the NCORP network. Details regarding survey development and distribution have been described in past reports.31,38,39 This study was reviewed by the Wake Forest University School of Medicine Institutional Review Board and identified as exempt.
NCORP practices treating AYAs were identified using the definition established by Beauchemin et al,31 which includes one of the following criteria: 1) answered “yes” to the question, “Does your affiliate/subaffiliate have a dedicated AYA program, defined as tailored resources specifically targeting the AYA population including treatment and supportive care?”; 2) treated ≥ 50 new AYAs annually; 3) AYAs comprised ≥ 5% of total patients treated annually.
Measures
The 2022 Landscape Assessment included three items with two potential sub-items relevant to financial distress screening and financial navigation. Financial distress screening was assessed with the question: “Does your affiliate/subaffiliate routinely screen oncology patients for financial distress?” Practices answering “yes” were asked to select how financial needs were identified. Practices that used patient-completed surveys to screen for financial needs were asked to specify the screening tool and method of completion. Financial navigation was assessed with the question: “How does your affiliate/subaffiliate respond to oncology patients who have financial needs?” Practices were able to select multiple options including: dedicated financial navigator or counselor who serves oncology patients (hereafter cancer-specific financial navigator), financial navigator that is not dedicated to oncology patients, social worker, billing staff, outside counseling, or case management service. The detailed questions and response options used in this study have been previously described.31,40
Practice characteristics collected from the Landscape Assessment included the following: whether the practice was a community practice or a designated Minority/Underserved site (serving a patient population comprised of at least 30% racial or ethnic minorities or rural residents),41 geographic location, practice ownership type, whether the practice was a designated critical access hospital,42 and whether the practice included a dedicated pediatric oncology program.
Characteristics of oncology patients treated at each NCORP practice were derived from questions regarding percentage of new patients covered by Medicaid and patients that are self-pay/covered by charity care/uninsured. Additionally, practices were categorized by sociodemographic characteristics including whether: (a) ≥ 19% of new cancer patients identified as Hispanic; (b) ≥ 8% patients spoke languages other than English; and (c) >30% of new patients insured by Medicaid. A cut off of ≥ 19% Hispanic was selected based on the most recent national average of Hispanic individuals in the United States (U.S.) population.43 A cut off of ≥ 8% was selected based on the national average of individuals that speak languages other than English.44 A cut off of >30% insured by Medicaid was selected based on previous analyses of financial screening and financial navigation across NCORP practices.40,45
Statistical analysis
The primary outcomes of this study included the proportion of NCORP practices treating AYAs with cancer reporting that they: 1) screen for financial distress, and 2) provide cancer-specific financial navigation. Secondary outcomes included describing methods used for financial distress screening and providing financial navigation. Primary outcomes were compared by practice and patient characteristics including the following: dedicated AYA program; pediatric oncology program; screening for health-related social needs; screening for psychological distress; critical access designation; percentage of new cancer patients identified as Hispanic; percentage of new patients covered by Medicaid; percentage of new patients that were self-pay/charity care/uninsured; percentage of new patients speaking languages other than English. The univariate association between outcome measurements (e.g., whether practices screen for financial distress or offer cancer-specific financial navigation) and the classification of practice and patient characteristics was assessed using Pearson’s Chi-squared test or Fisher’s exact test as appropriate, and magnitude of association further illustrated with odds ratios (OR) and 95% confidence intervals (CI). All p-values are two-sided, and a p-value <0.05 was considered statistically significant. Statistical analyses were performed using STATA software.46
Results
Practice Characteristics
Of the 46 NCORP Sites that were invited to participate in the 2022 Landscape Assessment survey, 45 (97.8%) responded. These 45 NCORP Sites represented 517 discrete clinics (~52.0%; 517 of 1000+ discrete clinics) and 271 practice groups39 (hereafter referred to as “practices”). Of the 271 participating practices, 100 were categorized as treating AYAs, as previously described.31 Table 1 describes characteristics of the NCORP practices that participated in the survey categorized as treating AYAs. Of the 100 practices treating AYAs, 25 (25.0%) were designated as a Minority/Underserved NCORP. Most practices were in the Midwest (36.0%) or South (30.0%). A total of 15 (15.0%) were designated critical access hospitals. A minority of practices had a dedicated AYA program (20.0%), and 36 practices (36.0%) reported having a dedicated pediatric oncology program.
Table 1:
Practice characteristics of NCORP Practices that treat AYAs
| Treats AYAs N=100 | ||
|---|---|---|
| NCORP Practice Characteristics | n | % |
| NCORP Type | ||
| Designated Minority/Underserved NCORP | 25 | 25.0 |
| Community NCORP | 75 | 75.0 |
| Region | ||
| Midwest | 36 | 36.0 |
| South | 30 | 30.0 |
| West | 21 | 21.0 |
| Northeast | 13 | 13.0 |
| Designated Critical Access Hospital | 15 | 15.0 |
| Includes dedicated AYA Program | ||
| No | 80 | 80.0 |
| Yes | 20 | 20.0 |
| Unknown/Not reported | 0 | 0.0 |
| Includes dedicated Pediatric Oncology Program | ||
| No | 4 | 4.0 |
| Yes | 36 | 36.0 |
| Unknown/Not reported | 60 | 60.0 |
| Characteristics of oncology patients within practices | ||
| ≥19% of new patients with cancer are Hispanic | ||
| No (<19%) | 80 | 80.0 |
| Yes (>=19%) | 20 | 20.0 |
| Unknown/Not reported | 0 | 0.0 |
| ≥8% speak languages other than English | ||
| No (<8%) | 60 | 60.0 |
| Yes (>=8%) | 30 | 30.0 |
| Unknown/Not reported | 10 | 10.0 |
| Percentage of new patients with cancer covered by Medicaid | ||
| 0–5% | 35 | 35.0 |
| 6–10% | 30 | 30.0 |
| 11–30% | 18 | 18.0 |
| 31–49% | 11 | 11.0 |
| ≥50% | 6 | 6.0 |
| Unknown/Not reported | 0 | 0.0 |
| Percentage of new patients with cancer that are self-pay/charity care/uninsured | ||
| 0–5% | 83 | 83.0 |
| 6–10% | 5 | 5.0 |
| 11–30% | 8 | 8.0 |
| 31–49% | 2 | 2.0 |
| ≥50% | 2 | 2.0 |
| Unknown/Not reported | 0 | 0.0 |
Abbreviations: NCORP denotes National Cancer Institute Community Oncology Research Program; AYA denotes adolescent and young adults
Patient Characteristics
Characteristics of patients with cancer served at practices treating AYAs are included in Table 1. A total of 20 practices (20.0%) reported treating ≥19% of new patients with cancer that identified as Hispanic. A total of 30 practices (30.0%) reported serving ≥8% of patients that spoke languages other than English. Thirty-five percent of practices reported treating 0–5% of new patients insured by Medicaid with 83.0% reporting 0–5% of patients that are self-pay/uninsured or covered by charity care. Compared to practices not treating AYAs (Supplementary Table 1), practices that treated AYAs reported higher percentages of treating: a) ≥19% of new patients identifying as Hispanic ( 20.0% vs 4.6%, p=0.002); b) ≥8% of patients that spoke languages other than English (30.0% vs 5.7, p<0.001); c) >30% of patients insured by Medicaid (17.0% vs 2.2%, p=0.001).
Financial Distress Screening and Financial Navigation
A summary of results describing financial distress screening and financial navigation at participating NCORP practices that treat AYAs is included in Table 2. A total of 82 (82.0%) practices routinely screened for financial distress with most practices (57.0%) reporting that social workers performed the screening. The remainder of the screening was performed either by the medical team (38.0%) or via patient-reported surveys (30.0%), primarily administered during appointments. Of the one-third of practices that reported screening by patient-completed surveys, the most commonly reported type of survey used for financial screening was a general distress thermometer (Figure 1).47 The proportion of practices that reported they completed screening did not differ from practices not treating AYAs (Supplementary Table 2).
Table 2.
Financial Distress Screening Practices and Financial Navigation Services Among NCORP Practices Treating AYAs
| N=100 | ||
|---|---|---|
| n | % | |
| Financial Distress Screening | ||
| Routinely screen for financial distress | ||
| No | 18 | 18.0 |
| Yes | 82 | 82.0 |
| Unknown/Not reported | 0 | |
| Methods used to screen:#^ | ||
| Questions completed by medical team | 38 | 38.0 |
| Survey completed by patient | 30 | 30.0 |
| If yes, Method of Survey Completion | ||
| Electronic form before appointment | 9 | 9.0 |
| Paper form during appointment | 23 | 23.0 |
| Electronic form during appointment | 3 | 3.0 |
| If yes, Type of survey used for financial screening | ||
| Distress thermometer | 22 | 22.0 |
| Single question screening | 4 | 4.0 |
| Comprehensive Score for Financial Toxicity (COST) | 0 | 0.0 |
| Other | 6 | 6.0 |
| Social worker evaluation | 57 | 57.0 |
| Physician referral or documentation | 34 | 34.0 |
| Risk factor-based screening | 32 | 32.0 |
| Other | 12 | 12.0 |
| Financial Navigation Services # | ||
| Dedicated financial navigator or counselor for patients with cancer | 47 | 47.0 |
| Financial navigator or counselor that is not dedicated to patients with cancer | 35 | 35.0 |
| Social worker | 81 | 81.0 |
| Billing staff | 46 | 46.0 |
| Referred to outside counseling or case management service | 31 | 31.0 |
| American Cancer Society | 22 | 22.0 |
| Other patient advocacy group | 17 | 17.0 |
| Provide resources or educational materials (handout, brochure) | 14 | 14.0 |
| None of the above | 0 | 0.0 |
| Other | 10 | 10.0 |
Respondents were permitted to select more than one method so percentages may sum to greater than 100%
Question was not completed for practices answering “no” to ““Does your affiliate/subaffiliate routinely screen oncology patients for financial distress?”
Abbreviation: NCORP denotes National Cancer Institute Community Oncology Research Program
Figure 1.
Survey Tools Used by Practices Screening for Financial Distress by Surveys Completed by Patients (n=30)
Free text answers for “Other” Types of surveys: “FPL & MFA guidelines”; “SDOH”; “The ESAS (specified under distress screening) includes finance”; “PROMS”; “Patient Intake Form”; “support referral form”
Most practices (81.0%) reported that social workers provided financial navigation services when financial needs were identified (Figure 2). Nearly one-half of practices (47.0%) provided financial navigation via a cancer-specific financial navigator. Approximately one-third of practices (35.0%) provided financial navigation via a financial navigator or counselor not dedicated to patients with cancer. One-third of practices referred to outside counseling or case management services when financial needs were identified (31.0%). Patterns of financial navigation services among practices treating AYAs and not treating AYAs were similar (Supplementary Table 2).
Figure 2.
Proportions of Practices Treating AYAs Routinely Screening for Financial Distress and Methods of Financial Navigation
Financial distress screening and cancer-specific financial navigation by practice characteristics
For NCORP practices that treat AYAs, Table 3 describes the proportion that screen for financial distress and offer cancer-specific financial navigation, by practice and patient characteristics and other services provided. A greater proportion of practices that screened for financial distress also screened for health-related social needs (89.0% vs 61.1%, OR [95% CI]: 5.2 [1.6, 16.7], p=0.003) and psychological distress (95.1% vs 72.2%, OR [95% CI]: 7.5 [1.8, 31.7], p=0.002) compared to those that do not screen for financial distress. There were no differences in proportions of practices reporting financial distress screening based on any of the following factors: critical access designation; percentage of patients identifying as Hispanic; percentage of patients insured by Medicaid; percentage of patients that are uninsured/self-pay or covered by charity care; or percentage of patients speaking languages other than English.
Table 3:
Univariate associations with NCORP Practices serving AYAs and offering cancer screening for financial distress and offering dedicated financial navigation by practice and patient characteristics and other services provided
| Screens for financial distress | Has dedicated financial navigator for patients with cancer | |||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Yes (N=82) | No (N=18) | OR (95% CI)* | P | Yes (N=47) | No (N=53) | OR (95% CI)** | P | |||||
| n | % | n | % | n | % | n | % | |||||
| Includes dedicated AYA program | ||||||||||||
| No | 64 | 78.1 | 16 | 88.9 | 1.0 | 0.52 | 42 | 89.4 | 38 | 71.7 | 1.0 | 0.028 |
| Yes | 18 | 22.0 | 2 | 11.1 | 2.2 (0.47, 10.7) | 5 | 10.6 | 15 | 28.3 | 0.30 (0.10, 0.91) | ||
| Includes dedicated Pediatric Oncology program# | ||||||||||||
| No/Not applicable | 52 | 63.4 | 12 | 66.7 | 1.0 | 0.99 | 37 | 78.7 | 27 | 50.9 | 1.0 | 0.004 |
| Yes | 30 | 36.6 | 6 | 33.3 | 1.2 (0.39, 3.4) | 10 | 21.3 | 26 | 49.1 | 0.28 (0.12, 0.68) | ||
| Screens for health-related social needs | ||||||||||||
| No | 9 | 11.0 | 7 | 38.9 | 1.0 | 0.003 | 4 | 8.5 | 12 | 22.6 | 1.0 | 0.054 |
| Yes | 73 | 89.0 | 11 | 61.1 | 5.2 (1.6, 16.7) | 43 | 91.5 | 41 | 77.4 | 3.1 (0.94, 10.5) | ||
| Screens for psychological distress | ||||||||||||
| No | 4 | 4.9 | 5 | 27.8 | 1.0 | 0.002 | 2 | 4.3 | 7 | 13.2 | 1.0 | 0.17 |
| Yes | 78 | 95.1 | 13 | 72.2 | 7.5 (1.8, 31.7) | 45 | 95.7 | 46 | 86.8 | 3.4 (0.67, 17.4) | ||
| Critical access designation | ||||||||||||
| No | 70 | 85.4 | 15 | 83.3 | 1.0 | 0.73 | 41 | 87.2 | 44 | 83.0 | 1.0 | 0.56 |
| Yes | 12 | 14.6 | 3 | 16.7 | 0.86 (0.22, 3.4) | 6 | 12.8 | 9 | 17.0 | 0.72 (0.23, 2.2) | ||
| ≥19% of new patients with cancer are Hispanic | ||||||||||||
| No (<19%) | 64 | 78.1 | 16 | 88.9 | 1.0 | 0.52 | 40 | 85.1 | 40 | 75.5 | 1.0 | 0.23 |
| Yes (>=19%) | 18 | 22.0 | 2 | 11.1 | 2.2 (0.47, 10.7) | 7 | 14.9 | 13 | 24.5 | 0.54 (0.19, 1.5) | ||
| Percentage of new patients with cancer that are covered by Medicaid | ||||||||||||
| 0–30% | 67 | 81.7 | 16 | 88.9 | 1.0 | 0.73 | 44 | 93.6 | 39 | 73.6 | 1.0 | 0.008 |
| >30% | 15 | 18.3 | 2 | 11.1 | 1.8 (0.37, 8.6) | 3 | 6.4 | 14 | 26.4 | 0.19 (0.05, 0.71) | ||
| Percentage of new patients with cancer that are self-pay/charity care/uninsured | ||||||||||||
| 0–10% | 71 | 86.6 | 17 | 94.4 | 1.0 | 0.69 | 41 | 87.2 | 47 | 88.7 | 1.0 | 0.82 |
| >10% | 11 | 13.4 | 1 | 5.6 | 2.6 (0.32, 21.8) | 6 | 12.8 | 6 | 11.3 | 1.1 (0.34, 3.8) | ||
| Percentage of new patients that speak languages other than English | ||||||||||||
| 0–7% | 47 | 64.4 | 13 | 76.5 | 1.0 | 0.34 | 33 | 76.7 | 27 | 57.5 | 1.0 | 0.052 |
| ≥8% | 26 | 35.6 | 4 | 23.5 | 1.8 (0.53, 6.1) | 10 | 23.3 | 20 | 42.6 | 0.41 (0.16, 1.02)) | ||
| Unknown or not reported | 9 | 1 | 4 | 6 | ||||||||
Univariate analysis by Pearson’s Chi-squared test of Fisher’s exact test as appropriate.
Question was not completed for practices answering “no” to “Does your affiliate/subaffiliate provide oncology care for pediatric patients?”
Abbreviations: AYA denotes adolescent and young adult
Odds ratio (95% confidence interval): Ratio of odds of screening for financial distress
Odds ratio (95% confidence interval): Ratio of odds of offering dedicated financial navigation
Only 5 of the 20 practices that reported having a dedicated AYA program reported providing cancer-specific financial navigation. A lower proportion of practices with access to cancer-specific financial navigation reported having a dedicated AYA program (10.6% vs 28.3%, OR [95% CI]: 0.30 [0.10, 0.91], p =0.028) or treating >30% of patients insured by Medicaid (6.4% vs 26.4%, OR [95% CI]: 0.19 [0.05, 0.71], p=0.008) compared to those without cancer-specific financial navigation. There were no differences in proportion of practices offering cancer-specific financial navigation by critical access designation, percentage of patients that identified as Hispanic, percentage of patients that are uninsured/self-pay or covered by charity care, or percentage of patients speaking languages other than English.
Discussion
Screening for financial distress and providing financial navigation are essential during cancer care for AYAs, as they are susceptible to the pernicious effects of cancer-related financial hardship. In this secondary analysis of the 2022 Landscape Assessment, we describe financial distress screening and financial navigation across NCORP practices treating AYAs with cancer. Our findings reveal that most practices reported that they screened for financial distress and about one-half of practices reported providing cancer-specific financial navigation. When compared to the 2017 Landscape Survey45 findings on financial distress screening and financial navigation at practices serving adult patients with cancer, more practices treating AYAs reported screening for financial distress, whereas a similar proportion of practices provided cancer-specific financial navigation. This suggests that although there is increasing recognition of financial distress and more broadly cancer-related financial hardship during cancer care, access to interventions to address financial needs including cancer-specific financial navigators has not advanced.
The increased focus on financial distress screening raises the ethical dilemma of whether we should expand efforts to screen for financial hardship without access to adequate support to respond to needs that are identified. In Figure 3, we illustrate the gap between the significant upward trend of annual published articles indexed under cancer-related financial hardship as compared to articles indexed under financial screening or financial navigation. While the number of articles has increased overall, the number of manuscripts addressing financial navigation in AYAs with cancer has not significantly trended upward in comparison to manuscripts describing cancer-related financial hardship in AYAs. These findings highlight the need for further research on financial navigation among AYAs with cancer given the evidence for increased risk of financial hardship in AYAs compared to older adults with cancer.
Figure 3.
PubMed indexed articles on financial toxicity and hardship, financial screening, financial navigation in all patients with cancer and adolescents and young adults.
PubMed search conducted using the following search terms: Cancer + financial toxicity/hardship = “cancer” AND (“financial hardship” OR “financial toxicity”). Cancer + Financial toxicity/hardship + AYA = “cancer” AND (“financial hardship” OR “financial toxicity”) AND ((((adolescent) OR (young adult)) OR (emerging adult)) OR (young)); Cancer + Financial screening = “cancer” AND “Financial screening”; Cancer + Financial screening + AYA = “cancer” AND “Financial screening” AND (((adolescent) OR (young adult)) OR (emerging adult)) OR (young)); Cancer + Financial Navigation = “cancer” AND “Financial navigation”; Cancer + Financial Navigation + AYA = “Cancer” AND “Financial navigation” AND (((adolescent) OR (young adult)) OR (emerging adult)) OR (young))
Abbreviations: AYA = adolescent and young adult
A critical first step for targeting financial hardship in AYAs with cancer is identifying specific needs that indicate how to effectively intervene. Although most NCORP practices are conducting financial distress screening, practices are using a wide variety of approaches to screen and a minority of practices are using patient- or caregiver-reported measures of financial distress. Specifically, of the practices that are utilizing surveys completed by patients, most are using a general distress thermometer to screen for financial distress. The NCCN distress thermometer is a simple, efficient method of screening for various needs that may contribute to distress in patients with cancer (e.g., physical, emotional, social, practical, spiritual).15 A separate analysis of the Landscape Assessment demonstrated that the NCCN distress thermometer is also commonly used at NCORP practices to measure health-related social needs, which are associated with financial distress.48 However, this measure is not sensitive nor specific in identifying financial needs.49 None of the practices treating AYAs utilized validated measures specifically designed to screen for cancer-related financial hardship or financial distress. This finding is likely attributed to the limited availability of measures of financial hardship among AYAs or their caregivers.50 One measure exists to assess psychosocial outcomes that affect AYA cancer survivors – the Impact of Cancer for childhood cancer survivors (IOC-CS) which measures eight domains including financial problems.51 The validity of this measure in AYAs undergoing cancer therapy is not established. Abbreviated versions of the COmprehensive Score for financial Toxicity (COST) measure52 have been utilized in patients with cancer including one-item and two-item screening tools to facilitate integration into clinical practice.53–55 Although these measures have not been specifically designed for AYAs with cancer, two of these measures included analyses by age with results suggesting utility in AYAs.54,55 Among younger AYAs with cancer, caregivers play a pivotal role and therefore, financial distress must also be considered from a dyadic or household level.56 Our findings regarding financial distress screening processes across NCORP practices treating AYAs underscore the need for an efficient, sensitive, and specific tool to identify financial needs in AYAs with cancer and their caregivers.
Among individuals diagnosed with cancer as AYAs, certain demographic characteristics have been associated with an increased risk of financial distress. Specifically, women and Hispanic AYA cancer survivors have reported higher levels of financial distress.57,58 While populations identified as most susceptible to financial distress may benefit from increased surveillance for financial distress, our study found that similar proportions of practices screened for financial distress, regardless of patient characteristics. Further research is required to determine if AYAs most prone to financial distress are being screened effectively and adequately to detect financial needs.
In addition to heightened surveillance for financial distress in AYAs with cancer, it is necessary that practices are equipped with resources to address financial needs that are identified throughout the continuum of cancer care and survivorship. Similar to pediatric and adult NCORP practices,40,48 we found that most practices are responding to financial needs via social workers, but it is unknown if these social workers are trained in cancer-specific financial navigation. Financial navigation, provided by a multidisciplinary team including social workers and financial navigators, has come to the forefront as an essential component of providing high quality comprehensive cancer care.59–62 Notably, we found that a lower proportion of practices treating AYAs and higher percentages of patients with Medicaid provided access to cancer-specific financial navigators. We also show that practices with dedicated AYA programs were less likely to have access to cancer-specific financial navigation. These findings suggest that programs dedicated to AYA care in community settings may be less likely to offer financial navigation designed to meet AYAs’ unique needs. Along with exploring capacity to expand access to cancer-specific financial navigators, it is necessary to investigate capacity to incorporate other modalities of financial navigation, such as those that utilize artificial intelligence,63 remote options,64 or educational financial materials, which may be more feasible at community oncology practices with insufficient resources to expand staffing.
Our study provides an important overview of financial distress screening and financial navigation across community practices treating AYAs. Understanding current processes in community oncology practices, including opportunities for further investigation and improvement, is critical as the impact of financial distress extends to other aspects of physical health, psychological well-being, and overall quality of life.65,66 AYA cancer survivors with severe financial distress report lower levels of physical function, lower self-efficacy and worse cognitive function compared to those with low to no financial distress.57 AYAs facing treatment related financial distress are more likely than non-AYAs to cope with strategies that are potentially harmful to their cancer care such as not filling prescriptions or taking less medications due to the cost.67 Severe financial hardship resulting in bankruptcy among patients with cancer has been observed as a risk factor for mortality.68 Financial hardship also has implications on the ability of AYAs with cancer to seek oncofertility care.69,70 Therefore, targeting financial hardship during and after cancer treatment for AYAs has the potential to have a significant multifaceted impact on improving overall cancer care delivery and patient outcomes.
Limitations of the study include that the Landscape Assessment was completed through self-report by the NCORP practices without centralized objective assessment of the services provided by the practice. The availability of resources at NCORP practices may not necessarily reflect access and utilization of these services by AYAs. The survey items regarding financial distress screening and financial navigation did not specify whether they were conducted at specific time points of the cancer care continuum (i.e., at diagnosis, during treatment, during survivorship).
In conclusion, although most NCORP practices treating AYAs reported screening for financial distress, few practices are screening with tools designed to measure financial distress or more broadly, cancer-related financial hardship. Additionally, it remains unknown if AYAs most vulnerable to cancer-related financial hardship have access to effective financial navigation. Further research is needed to design and implement interventions tailored for AYAs treated in community settings to optimize financial distress screening and financial navigation among this high-risk population.
Supplementary Material
Context Summary.
- Key objective:
To describe financial distress screening and financial navigation in community oncology practices that treat adolescents and young adults (AYAs).
- Knowledge generated:
Most National Cancer Institute Community Oncology Research Program (NCORP) practices treating AYAs with cancer reported routinely screening for financial distress, but only one-half of practices offer cancer-specific financial navigation.
- Relevance:
There are opportunities to expand cancer-specific financial navigation services among community oncology practices that treat AYAs.
Acknowledgements of research support for the study:
We would like to thank Eden Wood for her administrative support for the 2022 Landscape Assessment as well as the NCORP practices who participated in the assessment.
Supported by the National Cancer Institute: Wake Forest NCORP Research Base 5UG1CA189824 and COG NCORP Research Base Grant 3UG1CA189955 and Diversity Supplement 3UG1CA189955–10S2
Footnotes
Disclaimer: The authors declare that they have no conflicts of interest to disclose. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
References
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