PediCARE: Development of a Poverty-Targeted Intervention for Pediatric Cancer

Abstract

Background:

Poverty is associated with inferior psychosocial outcomes, higher rates of relapse, and decreased overall survival in children with cancer. Despite this, there are few evidence-based, poverty-targeted interventions and none specific to pediatric oncology. To address this gap, we developed and refined the Pediatric Cancer Resource Equity (PediCARE) intervention, a household material hardship (HMH) targeted intervention providing transportation and groceries to pediatric oncology families.

Methods:

This was a single-arm pilot study conducted at a single, large, tertiary pediatric cancer center. Newly diagnosed patients with HMH-exposure were directly assigned to receive PediCARE for a total of 3-months. Quantitative and qualitative approaches were used to evaluate its acceptability and to rapidly refine the intervention.

Results:

Nine families (100% of those approached) consented to enrollment with no attrition over the 3-month study period. Families were highly satisfied with the intervention and recommended participation to others. All of the families utilized the grocery delivery component of PediCARE, and 7 utilized the transportation component. Qualitative participant feedback was used to rapidly refine the intervention including logistics of intervention delivery, and dose of intervention components.

Conclusion:

PediCARE, a poverty-targeted intervention, was highly acceptable to pediatric oncology families. The intervention was refined in real-time utilizing quantitative and qualitative feedback. Next steps include intervention evaluation in a randomized, controlled feasibility study.

Background

One in five children diagnosed with cancer in the U.S. lives in poverty.¹ Despite treatment on the same multicenter clinical trials, poverty-exposed children experience inferior psychosocial outcomes,^2,3 higher rates of relapse,⁴ and decreased overall survival^5–7 compared to unexposed children. While national guidelines call for elimination of cancer outcome disparities,^8,9 few scalable, evidence-based interventions targeting poverty have been developed to achieve this goal.

One barrier to the development of poverty-targeted interventions for the clinical setting is the perception of poverty as a non-modifiable exposure. Household material hardship (HMH), a modifiable measure of poverty, is defined as unmet basic needs including food, utilities, housing, and/or transportation.¹⁰ In the general pediatric setting, HMH is associated with inferior child health outcomes and can be mitigated with intervention.^11–15 Trials in primary care have demonstrated that systematic HMH screening and referral to existing governmental and community resources (e.g. Supplemental Nutrition Assistance Program (SNAP) for food insecurity) can increase receipt of resources, reduce HMH, and improve health outcomes including vaccination rates in children and hypertension and hypercholesteremia in adults.^15–17 We previously demonstrated that 20-30% of children are living in a home with HMH at the time of cancer diagnosis, and this number increases during chemotherapy treatment.^18–20 Given the acute and life-threatening nature of childhood cancer, immediately impactful poverty-targeted interventions are urgently needed.

To address this need, we developed the Pediatric Cancer Resource Equity (PediCARE) intervention that directly provides groceries and transportation to target HMH-exposure in pediatric oncology. PediCARE was designed with components amenable to both rapid scalability across U.S. pediatric cancer centers, and fidelity to intervention delivery at scale. Childhood cancer is rare with approximately 15,000 new diagnoses per year in the U.S.²¹ and care for these children is dispersed across approximately 200 Children’s Oncology Group²² centers, a cooperative research group. Thus, scalable interventions cannot be specific to any one geographic location or center.

The inability to meet basic needs for one’s child in the setting of life-threatening illness is a sensitive and emotional topic for parents, thus a key question in developing PediCARE was its acceptability to parents in the clinical setting. The primary objective of this study was to refine PediCARE based on qualitative and quantitative parent/guardian feedback with a focus on acceptability, satisfaction, and experience with intervention content and delivery. To achieve this objective, we conducted a single-arm, pilot study of PediCARE among pediatric oncology families. Data from this study informed refinement of the intervention prior to subsequent multicenter randomized feasibility evaluation.

Methods

Intervention Components and Rationale

We previously demonstrated that one-third of pediatric cancer families experience unmet basic needs at diagnosis.¹⁹ In preliminary qualitative work, families identified food and transportation insecurity as uniquely challenging HMH domains during cancer therapy due to immediate concerns about nutrition and ability to reach the hospital or clinic for chemotherapy or unanticipated complications. PediCARE was developed based on the premise that connection to existing resources is necessary, but not sufficient, to meet the needs of pediatric families undergoing cancer treatment. PediCARE was thus designed to directly provide resources to families during cancer therapy.

We identified existing, scalable commercial solutions to provide groceries and transportation but were unable to identify immediate solutions to target housing and utility insecurities that would be scalable across U.S. pediatric cancer centers. Based on data from general pediatrics that provision of food (via SNAP) and transportation improves outcomes,^23–26 and that provision of one resource (e.g. food) can facilitate family reallocation of cash to support other needs (e.g. rent),²⁷ we designed PediCARE to directly provide groceries and transportation on a monthly basis with a goal of broad impact on resource needs.

Groceries were provided via Instacart, an online grocery-delivery platform widely available across the U.S., utilizing electronic Instacart gift cards in a dollar amount based on the U.S. Department of Agriculture (USDA) Thrifty Food Plan²⁸ for family size which serves as the national standard for a nutritious diet at minimal cost and is used as the basis for U.S. food stamps.²⁹ Transportation was provided via Ride Health, a non-emergency transportation company that provides a HIPAA-compliant digital platform to coordinate patient transportation using Uber or Lyft.³⁰ Ride Health is a web-based on-demand transportation platform that allows for HIPAA-compliant account generation and real-time ride scheduling by patients or their providers. Initial resource provision included 8 one-way rides per month (regardless of distance from home to hospital).

Study Design

We conducted a single-arm, pilot study of PediCARE among newly diagnosed pediatric cancer families at Dana-Farber Cancer Institute/Boston Children’s Hospital (DFCI/BCH) and assessed acceptability, satisfaction, and utilization experience through quantitative and qualitative methods. This research study and its intervention components were supported by research grant funding, and approved by the DFCI IRB.

Recruitment and Enrollment

Our target population included poverty-exposed families of children newly diagnosed with cancer. Eligible participants included children ages 0-17 years within two months of a new cancer diagnosis, who were scheduled to receive at least 4-cycles of chemotherapy at DFCI. Participants were required to have insecurity in at least one HMH domain (food, housing, energy, or transportation) on a five-item clinical screen administered by pediatric oncology social workers as part of routine care (see Supplemental Table S1).^10,31 Enrollment was limited to English-speaking families due to capabilities of research staff conducting qualitative interviews. Newly diagnosed patients were screened for study eligibility by research personnel and recruited in-person while inpatient or at a scheduled outpatient clinic visit. Study participation did not preclude families from receiving standard of care assessment and supports from institutional psychosocial and resource teams

Parent/guardians served as intervention recipients and survey informants on behalf of their children and provided consent for study enrollment. Assent for children was waived by the DFCI IRB based on concerns that a requirement to discuss family finances with children would preclude participation of vulnerable families.

Study Procedures

Study participation included three components: parent/guardian survey at study entry (baseline) and completion (3-months), receipt of PediCARE over 3-months, and in-depth parent/guardian interviews following each month of PediCARE to provide real-time qualitative feedback to facilitate rapid intervention refinement.

Baseline and post-intervention surveys were administered in-person by a research assistant. Following baseline survey completion, the research assistant oriented parents to PediCARE components, Instacart and Ride Health. Parents were informed that the intent of these resources was to provide groceries and household goods for the family during cancer treatment, and transportation for medical care or other essential needs. The research assistant facilitated (1) family creation of a personal Instacart account whose data were not accessible to study investigators and (2) creation of a family account within the DFCI Institutional Ride Health account whose data were accessible to study investigators. Grocery delivery required a smartphone or computer with internet access, and families without access to these had the option to order groceries on-site with the research assistant. Each month, Instacart gift cards were provided electronically into the participant’s account, and Ride Health accounts were pre-authorized for 8 rides (one-way).

Participants were invited to a total of three semi-structured interviews, one following each intervention month. Interviews were conducted by a trained qualitative researcher (AR) not associated with the care or study teams. Interviews occurred either in person or via telephone per parental preference and were audio-recorded. Interviews focused on parental experience with and assessment of PediCARE components (see Supplemental Material S2) and examined intervention-level and context-level factors.³² The interviews enabled sequential, open-ended feedback from participants regarding acceptability, satisfaction, and logistical challenges for immediate and long-term considerations for the pilot intervention. This qualitative approach reduced participant burden by breaking time commitments into smaller segments. Families received a gift card for participation in each interview as remuneration for their time.

Study Instruments and Medical Record Review

Survey domains included parent-reported sociodemographic data, HMH,¹⁸ household income and financial strain, and use of governmental supports (e.g. SNAP, Section 8 housing). The 3-month survey also included items regarding satisfaction and utilization of the intervention components, Instacart and Ride Health. Medical record review was performed by a research assistant to abstract clinical data including diagnosis, clinical trial enrollment, and treatment elements.

Outcomes

The primary aim of this study was to pilot and refine PediCARE based on quantitative and qualitative data from a single-arm study to ensure robust intervention design prior to subsequent feasibility testing in a multi-center randomized study. Acceptability of PediCARE was assessed through participants’ willingness to participate in a poverty intervention in the clinical setting based on consent and attrition rates, and feedback during structured interviews. Participants’ satisfaction was assessed with a single-item Likert scale question on the 3-month survey, as well as qualitatively during structured interviews, Experience with intervention content and delivery, including utilization and logistical challenges, was additionally assessed quantitatively on the 3-month survey and qualitatively during structured interviews. Feasibility was not a primary outcome of this pilot study and was assessed in an exploratory manner. This was a priori defined as >75% consent rate to study participation, successful delivery of intervention components to participants, and completion of baseline and 3-month surveys. Change in HMH was also explored, quantitatively on baseline and 3-month surveys and qualitatively through structured interviews.

Analysis

Patient demographics, household, disease and treatment characteristics were summarized for the overall cohort using descriptive statistics. Qualitative methods were used to analyze interviews with the assistance of NVivo software (QSR International Version 12). Qualitative analysis was conducted by a qualitative research scientist (AR) and incorporated aspects of rapid analysis following each interview,^33,34 as well as more traditional thematic analysis. This approach enabled the research team to immediately refine the intervention based on monthly feedback from families, while concurrently providing a systematic and comprehensive examination of the utilization and logistical challenges associated with PediCARE to inform development of the subsequent feasibility randomized controlled trial.³⁵ After completion of all of the interviews, comprehensive thematic analysis occurred using a multi-stage iterative approach. The coding structure was iteratively developed by the research team and included both prefigured and emergent codes. Thematic analysis focused on the assessment of the intervention content and delivery, including acceptability, satisfaction and logistical challenges with utilization.

Results

Recruitment and Data Collection

A total of 48 patients were screened for PediCARE eligibility from August 2018 to March 2019 and 9 were eligible to participate, in concert with the estimated 20% of poverty-exposed pediatric patients at time of diagnosis. All 9 families were approached and 100% consented to study participation. Baseline and 3-month surveys were completed by 100% of participants. Baseline survey measures of HMH and household income had no missing data. Follow-up survey data similarly had 100% complete HMH data, while follow-up income data were missing for one participant. Overall, consent rates and survey completion rates met our a priori feasibility definition. Each participant completed three interviews with the exception of one who completed only two interviews due to scheduling conflicts.

Patient and Household Characteristics

The study cohort included 5 children with hematologic malignancies, and 4 with solid tumors. Eight children were receiving treatment as per standard of care and 1 was enrolled on a clinical trial. Treatment plans included chemotherapy alone (n=3), chemotherapy and radiation (n=4) and chemotherapy, radiation, and surgery (n=2).

A majority (n=7) of households had a single-parent, and nearly half (n=4) of parents reported a high school education or less (Table 1). Most children had only public insurance (n=6). One-third (n=3) were Black and one-third (n=3) were Hispanic. At diagnosis, the median annual household income for the cohort was $12,490 (IQR 0-90,000), corresponding to 8 households living at <200% Federal Poverty Level (e.g. low-income). Five households reported HMH in 3 or 4 domains despite utilization of governmental supports such as SNAP (n=6), Section 8 housing (n=4), and disability benefits (n=4). Notably, all parents in the cohort had preexisting access to a smartphone to facilitate use of the intervention components.

TABLE 1:

Parent and child sociodemographic characteristics at baseline

Parent/Household characteristics	N (%)
Relationship to patient
Mother	7 (78)
Father	2 (22)
Primary language at home
English	8 (89)
Spanish	1 (11)
Marital status
Single	7 (78)
Married or living with partner	2 (22)
Highest education for primary caregiver
High school or less	4 (44)
Some college	2 (22)
College graduate	2 (22)
Child Characteristics
Child race
White	6 (67)
Black	3 (33)
Child ethnicity
Not Hispanic/Latino	6 (67)
Hispanic Latino	3 (33)
Health insurance
Public	6 (67)
Private or both	3 (33)
Poverty and HMH measures
Household income
<200% Federal Poverty Level	8 (89)
<100% Federal Poverty Level	6 (67)
Number of HMH domains
0	1 (11)*
1	2 (22)
2	1 (11)
3	3 (33)
4	2 (22)
HMH domains present
Housing insecure	5 (56)
Energy insecure	5 (56)
Food insecure	6 (67)
Transportation insecure	5 (56)
Governmental or community supports prior to enrollment
Medicaid	7 (78)
SNAP	6 (67)
Free school lunch	6 (67)
Food pantry	3 (33)
Energy assistance	1 (11)
Disability benefits	4 (44)
Section 8 housing	4 (44)

^*This patient was eligible for the study based on HMH identified by clinical social work screen. HMH had resolved by the time of study survey administration.

Intervention Delivery

Study team time and engagement with participants decreased steadily over the course of the intervention as logistics of intervention delivery were formalized and the ability to effectively “on-board” participants to the intervention improved. The total number of research assistant-participant contacts over the 3-month intervention decreased steadily, with the first enrolled participant experiencing a total of 25 interactions over 3-months, and the subsequent 8 participants averaging 7 interactions over 3-months (including required interactions at the start and completion of each intervention month).

Acceptability and Satisfaction

All of the families approached consented to study participation (100%) with no attrition during the 3-month intervention pilot. Further, parents did not qualitatively express concerns with regard to stigma associated with receipt of an intervention targeting poverty-exposures from the clinical setting. Overall quantitatively-evaluated satisfaction with PediCARE was high (Table 2), with 7/9 parents “very satisfied” and 2/9 “somewhat satisfied.” All 9 parents were “very likely” to recommend participation to other families. On the survey, 4/9 parents agreed that PediCARE provided the “just right” amount of support, 2/9 felt that it was “helpful but not enough” and 1 parent felt that it was “not nearly enough to be helpful” (responses were missing from 2 parents). Qualitative satisfaction was also high (Table 2). All 9 parents characterized the intervention as valuable, describing it as “helpful,” “wonderful,” “phenomenal,” and “unbelievable.” Several parents described that in the setting of limited income due to treatment-related work disruptions, PediCARE provided peace of mind, decreased worry, and reduced stress and noted that the intervention period should be longer than 3-months.

TABLE 2:

Parent Satisfaction and Utilization of PediCARE

Family Experience with Grocery and Transportation Provision

Instacart quantitative, qualitative and logistic utilization data

In survey responses, 7 parents reported that they found Instacart “very easy” to use and 2 parents indicated that it was “somewhat easy.” All 9 parents utilized Instacart for grocery delivery each month of the intervention and all parents reported that they used all or most of the grocery gift card provided each month (Table 2).

In qualitative interviews, parents described Instacart as straightforward, simple, and convenient. Frequency of use varied among participants and from month to month. Most reported ordering groceries from Instacart 2-3 times per month and a few used it weekly. Nearly all participants found that the dollar support was adequate to meet the needs of their family. Parents emphasized that the grocery component of PediCARE allowed them to purchase food they perceived as more healthy, fresh, and organic which would typically be prohibitively expensive for their family. They additionally noted that they could better cater to the food preferences of their children during chemotherapy, and appreciated that they could purchase non-food household goods stocked in grocery stores, such as cleaning supplies.

For some parents, online shopping was a new experience that resulted in initial hesitancy. Two parents were unable to use Instacart during the first month due to technical issues (electronic gift card access issue and inability to load the Instacart app on their phone). However, once issues were addressed by the study team there were no subsequent barriers to use identified by participants. In the interviews, parents expressed appreciation of study staff support with setting up an Instacart account, answering questions, and troubleshooting. Many parents noted the convenience of the delivery service, though some preferred in-person shopping for particular items (meat and produce). They additionally shared that they were not able to use coupons or loyalty programs with Instacart and there were instances where shoppers did not check expiration dates. While most parents liked the breadth of stores available in their ZIP codes, two parents noted that Walmart was not an option.

Ride Health quantitative, qualitative and logistic utilization data

Overall, 7 families (78%) utilized Ride Health at some point during the 3-month intervention, and 2 participants chose to use their personal vehicle for transportation. Among the families who used Ride Health, all 7 used 3 or 4 round-trip rides each month (Table 2). The cohort used a total of 71 rides (average ride length 59 minutes and range 10.1 to 111.5 minutes).

In qualitative interviews, parents described Ride Health as easy to use and helpful, and found that it decreased stress. Many parents expressed a preference for Ride Health over driving themselves or other modes of transportation because it made the trip to clinic easier and allowed them to sit with their child and focus on the child’s needs. A few parents also noted that rides were especially helpful for late night trips to the hospital.

Frequency of use varied and depended on their child’s clinic schedule. Depending on the phase of treatment or hospitalizations, parents needed transportation as frequently as every day. Parents experienced some, largely technological, issues with the Ride Health interface including codes that did not work, incorrect locations on the map settings, unfamiliarity with how to cancel rides, and drivers who did not know the city well. Many of the technological issues were resolved by study staff support or customer service. Two parents did not use Ride Health at all due to alternative modes of transportation or a preference to drive themselves given the unpredictable nature of their child’s treatment and side effects experienced.

PediCARE Impact on HMH

Parents reported in both survey and interview responses that PediCARE addressed basic resource needs and allowed families to reallocate cash resources from food and transportation to cover other basic needs such as electricity, phone, internet or mortgage payments (Table 2). Four participants experienced a reduction of at least 1 domain of HMH from baseline to 3-months.

Rapid Analysis Feedback and Intervention Modifications

Rapid analysis of qualitative interviews identified barriers and intervention delivery issues in 3 categories that were addressed with intervention modification (Table 3): unanticipated out-of-pocket costs to families, inadequate provision of transportation to meet clinical needs, desire for increased flexibility in intervention component delivery.

TABLE 3:

Rapid Refinement of PediCARE Intervention

Feedback	Illustrative Quotes	Change Made
Intervention content
1. Need for more rides	“I think the only thing was – it would be more individualized per family, because some families might need more rides than other. And I think that’s what it was, because I find myself where I would – like if I only – and I only had the eight rides a month or four back and forth. So I would make sure that I scheduled them correctly, so that I would use them in the best times for me, because I didn’t have a lot of them. So some days, I had a whole week of clinic. So that in one week alone, I used ten back and forth.” (Parent #4)	1. Expanded to 16 rides per month
2. Value of monthly grocery provision sufficient	“Yes. Mm-hmm. Definitely [the amount was sufficient to cover the needs my family had]” (Parent #6) “Also with the Instacart and all – it felt like a pretty good amount of money for a family of three.” (Parent #8)	2. No changes made
Intervention delivery challenges
1.Transportation: need for greater flexibility with transportation assistance	“I did not [use Ride Health]. And as I mentioned again, before, it’s because of the situation of the patient, in this case my son, what he was going through. And so it was – it would have been a good tool if the patient was just going to an appointment and come back without any type of treatment. But after treatment – after chemotherapy, is many side effects going on. And for overall experience, we have several times to – for example, stop on the road and have my son – was throwing up, or stop to get some water, stopping to get some air. So it’s really – it’s really – it would have been really hard for us to use the ride and having the need to do those things. But it’s providing a ride and knowing that probably he needs to be somewhere else in a short period of time. So it’s a little bit of a no freedom on that part. I know the intention is really great, but in this case, it’s really for us didn’t work as what’s intended to be.” (Parent #5)	1. Modified transportation component to included option of gas cards or Ride Health
2. Groceries: Parents communicated unanticipated out-of-pocket expenses associated with utilization of Instacart grocery delivery	“No, it’s been – even when I had the one little issue that I couldn’t get – because you have to put your card in. Only thing I wish they would do is change that, because you have to put your own card in. It’s a small amount that they charge. But still, if someone doesn’t have that, then they won’t be able to utilize it. That’s the only – even though you have that large amount of a gift card. But other than that, it’s pretty good.” (Parent #2) “Only – oh, the only thing was, but I don’t even know if it’s on you guys’ part; I think it might’ve been an Instacart part –… When they hold the five percent – they hold extra on your card…Because I didn’t have enough on the card.” (Parent #6)	2a. Instacart Express Memberships purchased to cover all service fees 2b. A portion of monthly dollars re-allocated to pre-paid Visa card loaded into family account to absorb all temporary credit card holds and fees
Intervention Duration
1. PediCARE should be longer than 3-months	“I wish it was longer than three months. I wish they’d work it out to do it through the duration of treatment, because it is a huge, huge – this will affects the family financially, mentally, emotionally – everything, and that really helps a lot.” (Parent #2) “ The only concern I have is like, you guys, it’s only three months…. Only three months. Like why can’t you guys make it for at least six months? [Laughs]… The three months was great. It helped me kind of get my foot on the goal – down and a little settled. But there’s still so much happening with [Child] and his care,” (Parent #4)	1. Reaffirmed plan for a 6-month PediCARE intervention

Parents identified unanticipated out-of-pocket expenses with utilization of their Instacart grocery gift cards. Specifically, while the cost of grocery purchases was deducted from the Instacart gift card as intended, the Instacart platform placed a temporary hold for the purchase amount to the credit card on file and additionally allocated small fees associated with purchases (e.g. tips and service fees) to the credit card on file with the family’s personal account. Parents expressed concern that this could result in overdraft fees for debit card accounts, as well as out-of-pocket expenses for fees. PediCARE was immediately modified to include (1) an Instacart Express Membership to cover fees and (2) a portion of grocery dollars allocated as a pre-paid Visa card loaded into the account to absorb temporary hold fees associated with purchases.

Following the first month of study intervention, parents also expressed that the number of allocated rides via Ride Health was inadequate to accommodate medically necessary trips to clinic for chemotherapy or radiation. Parents who had access to a reliable vehicle communicated a desire for flexibility in transportation support to allow for use of their own vehicle instead of Ride Health. In response, the transportation component of PediCARE was modified to (1) double the allocated Ride Health rides from 8 to 16 one-way rides per month, and (2) incorporate an option of Ride Health or gas cards in a dollar amount based on distance from home to hospital each month.

Discussion

We developed an HMH-targeted intervention with direct provision of groceries and transportation to address poverty-exposure in pediatric oncology. In a single-arm pilot study among low-income families in pediatric oncology, we utilized quantitative and qualitative parent feedback regarding intervention acceptability, satisfaction, and experience with intervention delivery to refine PediCARE. This approach to intervention refinement identified content and logistical limitations that were essential to overcome prior to evaluation of intervention feasibility in a subsequent randomized study.

PediCARE was highly acceptable to parents. The intervention had a 100% consent rate among parents approached and had no attrition during the 3-month pilot. Parents reported high levels of satisfaction with the intervention and expressed themes of appreciation and helpfulness of an intervention targeting basic resource needs. Importantly, there were no concerns for stigma or inappropriateness associated with a poverty-targeted intervention from the clinical setting. Evidence of high acceptability is a key finding given that PediCARE is the first poverty-targeted intervention intended for future trial-embedded evaluation in the pediatric cancer setting

Equally important was the successful real-time refinement of PediCARE based on monthly qualitative feedback to enhance parent satisfaction and utilization. Key areas identified for improvement included need for increased ride frequency and desire for flexibility in transportation resources. Parents identified a key logistical challenge with intervention delivery—specifically, Instacart platform fee allocation and temporary holds to account credit cards that could prove prohibitive to participants. In response, we refined the intervention to ameliorate each identified concern. Finally, parents almost universally expressed the need for PediCARE to last longer than 3-months, a finding that aligned with our intent for a 6-month intervention in future multicenter feasibility testing.

Universal financial hardship screening has been identified as a psychosocial standard of care in pediatric oncology³⁶ with guidelines for systematic implementation.³⁷ Although 95% of pediatric oncology programs have a social worker,³⁸ systematic screening and connection to resources for families with HMH is lacking.³⁹ We have previously demonstrated that a third of pediatric oncology families have HMH in a well-resourced tertiary pediatric center with robust psychosocial and resource support, which suggests that current screening practices and resource connection efforts are necessary but insufficient to meet the needs of families undergoing cancer treatment. While this pilot study was designed to refine PediCARE, not to evaluate intervention impact on HMH, exploratory analysis suggests that provision of resources in only two domains (food and transportation) improved resource needs in other domains. This is consistent with data from the federal SNAP program demonstrating that food supports positively impact other basic resource needs.²⁷ At 3-months, nearly half of parents reported improvement in one or more HMH domains from baseline. Several parents shared that PediCARE allowed them to reallocate cash towards other resource needs including gas, electricity, or mortgage. One family noted that money they might have spent on food was spent on medicine for their child. It follows that directly fulfilling basic resource needs for families, rather than merely connecting them to pre-existing resources, may allow parents to focus on their child’s treatment, improve their disease outcomes, and may mitigate the long-term financial toxicity of childhood cancer.⁴⁰ The effectiveness of PediCARE in impacting these outcomes will require evaluation in future studies.

The primary aim of this study was to utilize quantitative and qualitative parent feedback to refine the intervention, and to evaluate acceptability of a poverty-targeted intervention in the pediatric cancer clinical setting. While our approach achieved this aim, this pilot study had limitations. Research assistants initially spent a significant amount of time per week supporting participants. The number of study team interactions with participants decreased over the course of the pilot suggesting that many of these early interactions were related to refining intervention delivery logistics. Additionally, though we explicitly asked families to share concerns regarding PediCARE, parents may have been hesitant to directly criticize the intervention. This was addressed by ensuring that interviews were conducted by a person (AR) unaffiliated with their cancer care or the study design, and families seemed open to sharing issues and barriers to use. This was a single-center study of English-speaking families, which limited our ability to incorporate parent perspectives that reflect concerns specific to non-English speaking families or those from other geographic areas. Necessary next steps in evaluation of PediCARE include formal assessment of intervention feasibility in a geographically and language diverse cohort. Assessment of study team burden in a multi-center feasibility study will be essential to considering scalability for subsequent evaluation of effectiveness in a randomized controlled trial.

Data from this study informed refinement of a poverty-targeted intervention for pediatric cancer. Specifically, feedback from parents as key stakeholders informed changes to both intervention content and delivery to improve acceptability and satisfaction with the intervention. Poverty-exposure in childhood cancer is associated with inferior outcomes across the continuum of care,^2,4–7 yet no evidence-based interventions to directly target poverty in pediatric cancer exist. We are currently conducting a randomized, multi-center feasibility study of the refined PediCARE, an essential next step in developing the evidence-base to support integration of poverty-targeted interventions into the care of children with cancer.

Abbreviations

HMH

Household material hardship

SNAP

Supplemental Nutritional Assistance Program

PediCARE

Pediatric Cancer Resource Equity

USDA

US Department of Agriculture

DFCI

Dana-Farber Cancer Institute

BCH

Boston Children’s Hospital

Data Availability Statement:

The data that support the findings of this study are available from the corresponding author upon reasonable request.