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Exploring the financial burden of pediatric bone marrow transplantation: a cross-sectional Study from the caregiver's
Omid Soodi1, Akbar Abdollahiasl1, Shahideh Amini2
1Department of Pharmacoeconomics and Pharmaceutical Administration, School of Pharmacy, Tehran University of Medical Sciences, Tehran, Iran.
Insights
Caregivers face significant financial burdens from pediatric bone marrow transplantation, often depleting savings and selling assets. This highlights the need for policy and insurance reforms to alleviate the economic impact on families.
Area of Science:
- Hematology
- Oncology
- Health Economics
Background:
- Bone marrow transplantation (BMT), also known as hematopoietic cell transplantation (HCT), is a critical but costly medical procedure.
- The financial strain of HCT significantly impacts patients' families and caregivers.
Purpose of the Study:
- To evaluate the financial burdens associated with pediatric hematopoietic cell transplantation from the caregiver's perspective.
- To identify the specific economic challenges faced by families undergoing HCT.
Main Methods:
- A cross-sectional study involving 257 caregivers of pediatric patients who underwent HCT between March 2017 and March 2019.
- Data collection via a 25-item checklist assessing demographics, medical condition, and financial implications (employment, savings, assets, expenses, borrowing, lifestyle changes).
- Literature review of PubMed, Embase, and Web of Science databases.
Main Results:
- 92% of caregivers exhausted their bank savings, and 67% sold assets (commonly gold/jewelry) to cover HCT costs.
- Approximately 18% took leave from work, 19.5% worked part-time, and 18% became unemployed due to treatment demands.
- Allogeneic HCT was the predominant type (82.9%), with thalassemia and acute lymphoblastic leukemia being the most frequent diagnoses.
Conclusions:
- Despite lower BMT costs in Iran, the financial burden on caregivers is substantial, severely impacting household finances and quality of life.
- Urgent policy and insurance reforms are necessary to mitigate the economic hardships associated with HCT.
- Addressing the financial toxicity of HCT is crucial for improving patient and family well-being.
Background And Aim:
Bone marrow transplantation is an expensive treatment procedure that result in financial burdens. The aim of this study was to assess the financial burdens of this procedure from the caregiver's viewpoint.
Material And Method:
This cross-sectional study included pediatric patients (under 18 years old) who underwent hematopoietic cell transplantation March 21, 2017, and March 21, 2019. A checklist was designed for interview and data collection. A comprehensive review of articles in PubMed, Embase and web of science and scientific texts was conducted. The checklist comprises 25 items, of which 11 pertain to the demographic characteristics of the patient's guardian, three items are dedicated to the child's medical condition, and remaining items focus on the financial implications of the transplant, such as its impact on employment and bank savings, selling or exchanging assets to cover costs, receiving charitable support, economizing on essential and non-essential expenses, borrowing money to cover transplant expenses, and downgrading one's standard of living to afford the transplant.
Results:
A total of 257 caregivers of pediatric patients who were underwent hematopoietic cell transplantation (HCT) were interviewed. The majority of respondents (92%) were parents of patients. The predominant type of HCT among patients was allogeneic (82.9%). Patients underwent HCT for 17 different diseases, with the most common being thalassemia (18.7%) and acute lymphoblastic leukemia (ALL) (16.7%). About 18% of the respondents stated that they had to take leave from work to pursue transplantation for their patients. Additionally, 19.5% of the participants reported that they had to work part-time due to the demands of the treatment process, while about 18% were completely unemployed in order to follow the treatment process of their patients. 92% of caregivers were forced to spend all of their bank savings to cover HCT expenses. Furthermore, 67% of respondents stated that they were forced to sell their assets to cover HCT expenses, with gold and jewelry being the most commonly sold assets by households (38.5% or 99 people).
Conclusion:
Despite the lower cost of bone marrow transplantation in Iran compared to developed countries, the purchasing power of people and the insurance coverage should be taken into account. This study revealed that the financial burden on Iranian caregivers is substantial and leads to severe economic impacts and deterioration of households' quality of life. Therefore, policy and insurance reforms are needed to improve the situation of bone marrow transplantations.
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