Financial Burden of Pediatric Cancer for

Patients and their Families

ECHO L. WARNER, MPH

CANCER CONTROL AND POPULATION SCIENCES

HUNTSMAN CANCER INSTITUTE

Pediatric Cancer is Expensive

Costs for families include direct and indirect expenses◦ Hospitalizations

◦ $233 million per year from 2000-2005◦ $860 million in 2009 alone

◦ Work disruptions◦ 84% of families experience work disruptions◦ 20% of families lost >40% of their income due to cancer

Why Utah? Primary Children’s Hospital serves a large catchment area

Study AimsDetermine whether caregivers’ perceived financial burden of cancer differs due to:

1. Socioeconomic factors

2. Healthcare utilization factors

Methods

Participants◦ PCH’s Pediatric Hematology-Oncology outpatient clinic

◦ July 2010 – July 2012

◦ Diagnosed with cancer between ages 0-21 years ◦ Parents of eligible patients were eligible starting +2 months

after initial diagnosis ◦ Caregivers completed a 48 item survey exploring indices of

their families’ financial burden from cancer◦ Response rate of 77%

◦ 310 of 403 seen in out-patient

ExclusionsExcluded patients

◦ >5 years past diagnosis (N=28) ◦ Missing relevant data on time since diagnosis or financial burden

(N=26)◦ Uninsured (N=2)

Final sample size N=254

Outcome Perceived Financial Burden

“Using the scale below, how much of a financial burden has your child’s cancer treatment been on your household?”

No burden Very large burden

1 72 3 4 5 6

(0) (100)

DemographicsPatient CaregiverCurrent age 0-4 5-9 10-14 15-26Age at diagnosis 0-4 5-9 10-14 15-21Diagnosis Acute Lymphoblastic Leukemia (ALL) Solid tumors (Wilms’, sarcoma etc.) Brain tumor Acute Myeloid Leukemia (AML)

Gender Female MaleHousehold income <$39,999 $40,000-$59,999 $60,000-$99,999 Over $100,000Education ≤High school/GED ≥Some college/vocational

Independent factorsSocioeconomic Healthcare utilization

Insurance Private (employer/military) Public (Medicaid, Medicare, CHIP)Place of residence Rural UrbanParental employment

Quit/changed job due to cancer No change in employment

Unexpected HospitalizationsNo admissions1-4 admissions≥5 admissions

Outside hospital Yes No

Statistical Analysis Stata 12

Bivariate associations by time since diagnosis◦ Socioeconomic & healthcare utilization factors◦ Chi-square and t-tests

3 multivariable linear regression models ◦ To assess the impact of socioeconomic factors & healthcare utilization factors

on financial burden◦ Controlled for patient sex, age at diagnosis, insurance and place of residence

1. Full sample2. <1 year3. 1-5 years

Results

Demographics

< 1 year from diagnosis

N=113

1-5 years from diagnosis

N=141 Current Age % % p-value 0-4 39.8 22.7 <0.01 5-9 23.0 38.3 10-14 23.9 17.7 15-26 13.3 21.3 Gender Female 47.8 44.0 0.54Current Household Income <$39,999 25.7 33.5 0.35 $40,000 - $59,999 31.4 19.4 $60,000 - $99,999 32.4 32.1 Over $100,000 10.5 14.9 Caregiver Education ≥Some college/vocational 90.9 81.9 0.04

Cancer Diagnosis

ALL42%

Solid tumor41%

Brain tumor11%

AML6%

ALLSolid tumorBrain tumorAML

Financial Burden Mean financial burden

◦ <1 year = 64.4 ◦ (SD 33.0; IQR 49-87)

◦ 1-5 years = 69.0 ◦ (SD 28.7; IQR 50-87)

0-25 26-50 51-75 76-100

0102030405060708090

100< 1 year 1-5 years

Financial Burden

Perc

enta

ge

Socioeconomic Factors Bivariate

◦ No significant differences in insurance, place of residence or parental work status

◦ Over 30% of parents quit or changed work

< 1 year 1-5 years0

20

40

60

80

100Parental work status

Quit or changed jobNo change in employment

Perc

enta

ge

Socioeconomic Factors Multivariable Linear Regression Models

1. Full Sample◦ Rural residence

◦ β=12.3 (95% CI 2.8-21.9, p=0.01)

2. <1 year from diagnosis◦ No significant differences

3. 1-5 years from diagnosis◦ Parents quitting or changing their employment

◦ β=13.4 (95% CI 3.2-23.6, p=0.01)

Healthcare Utilization Factors

Bivariate◦ Care at another hospital

◦ <1 year: 43.4%◦ 1-5 years: 63.1%◦ p<0.01

◦ ≥5 Unexpected hospitalizations◦ <1 year: 12.4%◦ 1-5 years: 34.7%◦ p<0.01

< 1 year 1-5 years0

20

40

60

80

100

Unexpected Hospitaliza-tions

0 1-4 ≥5

Perc

enta

ge

Healthcare Utilization Factors

Multivariable linear regression models

1. Full sample◦ Receipt of care at a hospital outside of PCH

◦ β=9.4 (95% CI 1.7-17.0, p=0.02)

2. < 1 year from diagnosis◦ No significant differences

3. 1-5 years from diagnosis◦ ≥5 unexpected hospitalizations

◦ β=24.9 (95% CI 9.1-40.7, p<0.01)

Discussion

DiscussionCertain factors may increase financial burden

◦ Unexpected hospitalizations◦ Caregiver employment disruption◦ Place of residence◦ Care at outside hospital

Unmanaged costs at the time of diagnosis could reduce financial capabilities later in life

Costs can be managed by meeting with a financial advisor◦ Early in the diagnosis and treatment process

RecommendationsFlexibility in appointment scheduling

◦ To support parents’ employment

Use of telemedicine◦ To reduce travel related expenses for rural patients

Patient Protection and Affordable Care Act◦ Focus on improving health insurance coverage◦ Limits out of pocket costs◦ Eliminates lifetime dollar limitations

THANK YOU! Mark Fluchel, MD, MS Anne Kirchhoff, PhD, MPH Gina Nam, BS, BA Patients & Families Funding: Hyundai Hope on Wheels & Huntsman Cancer Institute