Financial Burden of Pediatric Cancer for Patients and their Families ECHO L. WARNER, MPH CANCER CONTROL AND POPULATION SCIENCES HUNTSMAN CANCER INSTITUTE
Jun 25, 2015
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