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Proton Therapy Delivery and Its Clinical Application in Select Solid Tumor Malignancies
Published on: February 6, 2019
Understanding the Burden of Care for Children With Pediatric Solid Tumors
Julie M Thamby1, Catherine B Beckhorn1, Alexandria L Soto1
1Duke University School of Medicine, Durham, North Carolina, USA.
Insights
Caring for children with solid tumors creates significant financial and logistical burdens for families, including extensive medical care days and lost wages. Addressing these challenges requires improved care delivery models and policy changes for better support.
Area of Science:
- Pediatric Oncology
- Health Services Research
- Medical Economics
Background:
- Pediatric solid tumors present considerable challenges beyond direct medical expenses.
- Previous research has focused on direct costs, neglecting indirect burdens like logistical stress and life disruptions.
- This study quantifies the comprehensive burden of care in the first year post-diagnosis.
Purpose of the Study:
- To assess healthcare utilization and estimate the logistical and financial burden on families of children with solid tumors.
- To quantify indirect costs, including travel and lost wages, associated with pediatric cancer care.
- To identify factors influencing the burden of care for these families.
Main Methods:
- Retrospective chart review of 166 children diagnosed with extracranial solid tumors between 2012-2022.
- Data collection included treatment modalities, healthcare visits, travel distances, and estimated job opportunity costs.
- Analysis focused on the first year following diagnosis to capture the full spectrum of initial burden.
Main Results:
- Children experienced a median of 54 days of medical care and families traveled significant distances, incurring substantial costs.
- Estimated annual travel costs reached $2,079, with lost wages averaging $15,277, representing ~21% of median household income.
- Advanced-stage disease correlated with increased medical care days, travel, and financial strain on families.
Conclusions:
- Pediatric solid tumors impose significant medical and financial burdens on families.
- Decentralized care, multidisciplinary approaches, and policy interventions like expanded insurance coverage are crucial.
- These strategies can potentially alleviate the logistical and financial hardships faced by families during cancer treatment.
Background:
A new solid tumor diagnosis imposes substantial burdens on children and their families. Prior studies have quantified burden using direct medical costs but often exclude indirect costs, logistical stress, and life disruptions. In this study, we quantify burden of care by assessing healthcare utilization and estimating the associated logistical burden during the first year following diagnosis.
Procedure:
We conducted a retrospective chart review of 166 children (2012-2022) treated within 1 year of an extracranial solid tumor diagnosis at a single institution. We collected data on treatment modalities, healthcare utilization, estimated travel, and job opportunity costs.
Results:
Altogether, 166 children (55% male, 63% White) with median age at diagnosis 2.2 (IQR 1.1-4.8) years were included. The most common diagnoses were neuroblastoma (41%), retinoblastoma (25%), and nephroblastoma (17%). Sixty-four children (39%) received ≥3 treatment modalities and 75% required tumor resection surgery. Children cumulatively spent a median of 9 days receiving medical care (5-18) at 1 month, 22 (12-35) days at 3 months, 35 (21-68) days at 6 months, and 54 (30-106) days at 1 year. Families traveled a median one-way distance of 79 (35-136) miles. Estimated annual travel costs were $2,079 ($1129-$4267) and lost wages were $15,277 ($7477-$27,101), ∼21% of median household income. Advanced-stage disease was associated with significantly more days spent receiving medical care, longer travel, and greater lost wages.
Conclusion:
We characterize the substantial medical and financial burdens on families of children with solid tumors. Decentralized care delivery, multidisciplinary care models, and policy-level approaches such as expanded insurance coverage may reduce logistical and financial burdens.
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