Abstract
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.
Supplementary Information
The online version contains supplementary material available at 10.1186/s12913-025-12377-6.
Keywords: Bone marrow transplantation, Pediatrics, Cost of illness, Iran
Introduction
Bone marrow transplantation is a treatment procedure in which healthy stem cells are introduced into patients with dysfunctional or depleted bone marrow. This process enhances bone marrow function and facilitates the production of functional stem cells that can effectively replace the impaired ones [1]. Today, bone marrow transplantation plays an important role in the treatment of many diseases that occur in childhood, such as bone marrow failure, immune system deficiency, congenital metabolic diseases, and a variety of hematologic malignancies. Hematopoietic Stem Cell Transplantation (HSCT) is a well-recognized form of treatment for several malignant or non-malignant diseases [2]. In addition, it is has become a well-established therapy for many severe congenital or acquired disorders of the hematopoietic system and for chemo-sensitive, radio-sensitive or immune-sensitive malignancies in children [3–5]. Recent advances in bone marrow cell transplantation have resulted in reduced the risk of transplant mortality [2]. The annual global incidence of HSCT has been steadily rising, with confirmed regional variations in donor types, stem cell sources, and medical indications [6]. About 55,000 bone marrow transplants are performed annually worldwide [7]. The Center for International Blood and Marrow Transplant Research (CIBMTR) reported over 8000 allogenic transplants performed in the United States in 2016 [8]. Stem cell transplantation represents one example of high-cost, highly specialized medicine [9]. The patterns and trends of HSCT vary significantly across countries, influenced by factors such as disease prevalence, economic conditions, and the availability of donor programs. While HSCT often represents the sole viable treatment option for both malignant and non-malignant diseases, achieving a cure through this method comes at a considerable cost [10]. In 2009, the US Agency for Healthcare Research and Quality published a report in which according to the ranking of this report, bone marrow transplantation was among the top ten most expensive treatments [11]. HSCT is still a challenge for several countries with low incomes because of its high cost of establishment system [12]. There is a growing concern about financial burdens and medical expenses following treatment, particularly in the case of bone marrow transplantation [13, 14]. Bone marrow transplantation has been associated with financial consequences, including bankruptcy, the necessity to sell homes, and the depletion of retirement savings [13, 15]. Iran is one of the leading countries in bone marrow transplantation in the Middle East. The first bone marrow transplant in Iran was performed in 1991 at the Research Institute for Oncology, Hematology and Cell Therapy [16]. Hematology, Oncology and Bone Marrow Transplant Research Center performs the highest number of bone marrow transplants in the Middle East with more than 400 transplants per year. A large proportion of patients transplanted at the Hematology and Oncology and Bone Marrow Transplant Research Center were children under the age of 15. Between 1991 and 2012, 1,105 bone marrow transplants were performed in children under the age of 15 [17].
Despite the high incidence of bone marrow transplants in Iran, there is a notable lack of economic research on the subject. No studies have explored the financial burden of bone marrow transplantation and its impact on family quality of life in the country. According to feedback from healthcare professionals at the Pediatric Bone Marrow Transplant Research Center, many parents are compelled to cut living expenses or sell essential assets to afford treatment, leading to significant consequences for their households. This underscores the urgent need for economic studies in this area. Therefore, this study aims to evaluate the financial burden of bone marrow transplantation from the perspective of caregivers.
Materials and methods
Design and population
A cross-sectional study was carried out in Tehran, Iran. The study population included pediatric patients (under 18 years of age) who underwent hematopoietic cell transplantation at the Research Institute for Oncology, Hematology and Cell Therapy of Shariati Hospital between March 21, 2017, and March 21, 2019. A total of 327 individuals were admitted to the pediatric transplant department. Of these, 257 were successfully interviewed, while the remaining individuals were excluded from the study due to various reasons, including the inability to contact the child’s guardian in person or via phone, or the guardian’s refusal to participate in the interview.
Bone marrow transplantation procedure in Iran
The participants received their bone marrow transplants at Shariati Hospital, a specialized center for pediatric procedures. Donor-recipient compatibility was determined through Human leukocyte antigen (HLA) tissue typing, which evaluates the antigens found on certain white blood cells that affect immune system genetics. Before the transplant, recipients underwent a thorough evaluation, including comprehensive physical exams and various tests to assess organ and blood function. Patients typically visited the transplant center ten days prior to the procedure for hydration, evaluation, and further preparations.
To facilitate treatment, a surgeon or radiologist inserted an intravenous catheter into a large vein in the chest or neck, which remained in place throughout the procedure. This catheter was used by the transplant team to administer stem cells, medications, and blood products. In autologous transplantation, stem cells were collected through apheresis after the patient received daily growth factor injections to boost stem cell production. During apheresis, blood was drawn and processed in a machine that separated it into its components, allowing for the harvesting of stem cells, which were then frozen for later use, while the remaining blood was returned to the patient.
In allogeneic transplantation, stem cells were collected from a suitable donor's blood or bone marrow, or sourced from preserved umbilical cord blood. After necessary evaluations, the patient undergoes "conditioning," which includes chemotherapy and possibly radiation to eliminate malignancies and clear space in the bone marrow for new cells. This process suppresses existing blood cell production. Following conditioning, the bone marrow transplant involves infusing the stem cells into the bloodstream via a venous catheter, allowing them to migrate to the bone marrow, replicate, and promote healthy cell growth [18, 19].
Designing the survey
The survey tool was designed in three phases. In the first phase, a comprehensive review of articles and scientific texts was conducted. Relevant scientific articles were identified through searches in PubMed, Embase and web of science databases using keywords such as bone marrow transplantation, cost-benefit analysis, financial burden, hematopoietic cell transplantation, and allogeneic hematopoietic cell transplantation. Based on the findings from the literature review, a draft tool was developed. In the second phase, the draft tool was circulated among professors for their feedback. Based on their suggestions, revisions were made to the checklist, including the addition of new components and items. The final version of the survey tool was adjusted to reflect the cultural and economic conditions of the country. Upon completion of the survey design, it was reviewed by a panel of four experts, including a drug management and economics specialist, two clinical pharmacists, and a hematology and oncology physician. Ambiguities and shortcomings in the checklist were addressed, and the checklist’s validity was ultimately endorsed by the experts.
Data collection and interviews
The survey comprises 25 items, of which 11 pertain to the demographic characteristics of the patient’s guardian. These include the guardian’s relationship to the child, gender, educational attainment, marital status, occupational group and level, household size, province of residence, average monthly income, and type and coverage of health and supplementary insurance. Three items are dedicated to the child’s medical condition, including the type of disease, whether the transplant was allogeneic or autologous, and the timing of the transplant. The 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. Priority of gathering information was face to face interview with respondents, but in cases who were not available for face-to-face interview, telephone interview was performed.
Statistical analysis
The Chi-square test was employed to examine the relationship between the characteristics of caregivers and factors contributing to financial burden. In instances where the assumptions of the Chi-square test were not satisfied, Fisher's exact test was applied. Data analysis was conducted using SPSS software version 25, with a significance level set at less than 0.05.
Results
A total of 327 pediatric patients (under 18 years of age) underwent HCT. Interviews were conducted with the caregivers of 257 of these patients. Table 1 presents the demographic and clinical characteristics of patients and caregivers. The sex distribution of the respondents was evenly balanced, with nearly equal numbers of males and females participating. The majority of respondents (92%) were parents of patients, while the remaining 8% were non-parental caregivers. Most caregivers (94.2%) were married. 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%), acute lymphoblastic leukemia (ALL) (16.7%), aplastic anemia (12.1%), primary immunodeficiency (9.3%), and acute myeloid leukemia (AML) (7.8%).
Table 1.
Baseline characteristics of participants
| Base line characteristics | N (%) |
|---|---|
| Gender | |
| Male | 138 (54%) |
| Female | 119 (46%) |
| Marital status | |
| Single | 21 (8.2%) |
| Married | 236 (91.8%) |
| The guardian-child relationship | |
| Parents | 236 (91.8%) |
| Grandfather or grandmother | 6 (2.3%) |
| Close relatives | 9 (3.5%) |
| Others | 6 (2.3%) |
| Type of HCT | |
| Allogeneic | 221 (86%) |
| Autologous | 36 (14%) |
| Disease | |
| Thalassemia | 48 (18.8%) |
| ALL | 43 (16.8%) |
| Anemia aplastic | 31 (12.1%) |
| Primary immune deficiency | 24 (9.4%) |
| AML | 20 (7.8%) |
| Fanconi | 19 (7.4%) |
| Sickle cell anemia | 14 (5.5%) |
| Hodgkin | 12 (4.7%) |
| Neuroblastoma | 11 (4.3%) |
| Non-Hodgkin | 9 (3.5%) |
| Brain tumor | 7 (2.7%) |
| CML | 4 (1.6%) |
| Rhabdomyosarcoma | 4 (1.6%) |
| Myelodysplastic syndrome | 3 (1.2%) |
| Error metabolism | 3 (1.2%) |
| Diamond Black fan anemia | 2 (0.8%) |
| Osteoporosis | 2(0.8%) |
Table 2 summarizes the socioeconomic background of the respondents. A significant portion (69.3%) had a high school education or lower, while only 7.5% held degrees beyond a bachelor. The largest occupational group was housewives, comprising about 36% of the respondents (92 individuals), followed by those in service occupations (26%), engineering (12.5%), and education (7.8%). Nearly half of the participants (47%) were employed in labor or employee positions, with only 8 serving as employers. Most respondents (79%) lived in households of four or five members, and less than 10% had households with more than five members. More than 90% reported household incomes below four million Tomans, with none exceeding eight million; only 7.3% indicated an income between four and eight million Tomans. Additionally, nearly 30% of the patients had supplementary insurance.
Table 2.
Scocioeconomic statuse of participants
| Scocioeconomic factorsor | N (%) |
|---|---|
| Education level | |
| High school or lower | 178 (69.3%) |
| Associate degree or bachelor degree | 119 (46.3%) |
| Master degree or higher | 19 (7.4%) |
| Job category | |
| Engineering | 32 (12.5%) |
| Educational or cultural or artistic | 20 (7.8%) |
| Administrative and financial | 16 (6.3%) |
| Health cares | 5 (2%) |
| Service occupations | 68 (26.6%) |
| Agriculture | 16 (6.3%) |
| Social and political affairs | 5 (2%) |
| Information technology | 2 (0.8%) |
| Housekeeping | 92 (35.9%) |
| Job level | |
| Employer | 8 (3.1%) |
| Employee or worker | 121 (47.1%) |
| Freelance | 37 (14.4%) |
| Housekeeping | 92 (35.7%) |
| Household size | |
| 2 or 3 people | 29 (11.3%) |
| 4 or 5 people | 203 (79%) |
| More than 5 people | 25 (9.7%) |
| Household income per month | |
| Less than 2 million Tomans | 120 (46.0 %) |
| Between 2 and 4 million Tomans | 118 (49.9) |
| Between 4 and 6 million Tomans | 17 (6.6%) |
| Between 6 and 8 million Tomans | 2 (0.8%) |
| Between 8 and 10 million Tomans | 0 (0.0%) |
| More than 10 million Tomans | 0 (0.0%) |
| Having supplementary insurance | |
| Yes | 74 (28.8%) |
| No | 183 (71.2%) |
Table 3 presents a summary of the financial burden of HCT on caregivers. Approximately half of the participants reported that they had to rely on charities to afford HCT expenses. About 17.9% of the respondents stated that they had to take leave from work to pursue transplantation for their patients, which negatively impacted their income. 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. In fact, HCT had a negative impact on the employment of about 87% of all caregivers.
Table 3.
Financial burden of HCT on caregivers
| Indicators | N (%) |
|---|---|
| Effect of HCT on Caregivers’ Savings | |
| Exhausted nearly all of my savings | 238 (92.6%) |
| Used more than half of my savings | 9 (3.5%) |
| Utilized less than half of my savings | 0 (%) |
| Did not need to touch my savings | 10 (3.9%) |
| Impact of HCT on caregivers’ employment | |
| HCT didn’t have any impact on my employment | 34 (13.2%) |
| I had to take some days off to pursue transplant affairs | 127 (49.4%) |
| I had to work part-time to deal with transplant affairs | 50 (19.5%) |
| I had to leave my job to deal with transplant affairs and I am currently unemployed | 46 (17.9%) |
| Selling assets to afford HCT costs | |
| Yes, I had to sell at least one of my assets | 172 (66.9%) |
| No, I didn’t have to sell my assets | 85 (33.1%) |
| Type of assets sold by caregivers | |
| House | 40 (15.6%) |
| Car | 33 (12.8%) |
| Store | 3 (1.2%) |
| Land | 33 (12.8%) |
| Jewelry | 99 (38.5%) |
| Other assets | 9 (3.5%) |
| Assets Substituted to Cover HCT Costs | |
| Alternative home | 31(12.1%) |
| Alternative car | 226 (87.9%) |
| Alternative store | 16 (6.2%) |
| Borrow money | 227 (88.3%) |
| Get a bank loan | 118 (45.9%) |
| Save on unnecessary living expenses | 235 (91.4%) |
| Save on necessary living expenses | 181 (70.4%) |
Over 90% of caregivers reported depleting their bank savings to cover HCT expenses, with only 3.5% not withdrawing any funds. Additionally, 67% indicated they had to sell possessions to manage these costs, primarily gold and jewelry, with 38.5% of households engaging in such sales. Cars and land were also commonly sold, each representing 13% of the assets sold. Furthermore, 7% of participants were compelled to sell their homes to finance transplant expenses. Among the respondents, 50 participants (19.5%) reported changing at least one asset to afford HCT costs, with 31 opting to sell their homes for cheaper alternatives or moving to less expensive rentals, while 16 participants (6.2%) sold their cars for more affordable models.
A substantial 88% of interviewees indicated that they borrowed money from friends and family to finance transplant expenses, while 45.9% reported securing bank loans for the same purpose. Furthermore, 91.4% of participants had to cut back on non-essential living expenses, including travel, recreation, and educational activities, to meet transplant costs. Additionally, 70.4% of respondents reported having to reduce spending on essential items like food, clothing, and transportation due to the financial burden of the transplant.
Analytical results indicated that the financial burden on families varies based on the educational attainment of the caregivers, and the caregiver's monthly income.
Individuals with high school or lower education levels were more likely to take leave (75 people), work part-time (40 people), or face unemployment (39 people). Additionally, 74 individuals with primary education, 37 with secondary education, and 7 with higher education were necessitated to secure bank loans. Among individuals with an income below 2 million, 48 were compelled to take leave, 24 transitioned to part-time work, and 34 faced unemployment. Moreover, individuals with lower incomes were forced to sell their assets, borrow money or secure loans from the bank (Table 4 and Figs. 1, 2, 3, 4, 5 and 6).
Table 4.
The relationship between caregivers’ characteristics and financial burden of bone marrow transplantation
| Types of financial burden of HCT | Education level | Job level | Household size | Household income per month | Having supplementary insurance | |||||
|---|---|---|---|---|---|---|---|---|---|---|
| Pearson chi-square. | P | Pearson chi-square. | P | Pearson chi-square. | P | Pearson chi-square. | P | Pearson chi-square. | P | |
| Caregivers Savings | 1.27a | 0.860 | 1.96a | 0.915 | 2.03a | 0.693 | 9.87a | 0.124 | 1.73a | 0.405 |
| caregivers’ employment | 13.71a | 0.026 | 1.00a | 0.317 | 9.08a | 0.155 | 24.23a | 0.001 | 1.85 | 0.606 |
| Selling assets to afford HCT costs | 0.49 | 0.788 | 4.55a | 0.203 | 0.42 | 0.839 | 7.55a | 0.040 | 0.01 | 1.00 |
| Assets Substituted to Cover HCT Costs | 2.09 | 0.368 | 5.50 | 0.134 | 0.60 | 0.751 | 0.42a | 0.959 | 0.04 | 0.863 |
| Borrow money | 0.31a | 0.897 | 2.29 | 0.496 | 1.22 | 0.574 | 14.07a | 0.002 | 1.02 | 0.390 |
| Get a bank loan | 7.97 | 0.018 | 2.51 | 0.472 | 4.84 | 0.095 | 9.88a | 0.012 | 3.77 | 0.055 |
| Save on unnecessary living expenses | 0.41 | 0.821 | 0.18 | 1.00 | 2.54a | 0.303 | 2.44a | 0.477 | 1.72 | 0.219 |
| Save on necessary living expenses | 1.00a | 0.600 | 2.37 | 0.501 | 1.61 | 0.441 | 1.64a | 0.665 | 0.88 | 0.367 |
aFisher exact test value
Fig. 1.
Association between caregiver’s education level and Impact of HCT expenses on caregiver employment status (Total n=257)
Fig. 2.
Association between caregiver’s education level and Impact of HCT for get a bank loan (Total n=257)
Fig. 3.
Association between caregiver’s monthly income level and Impact of HCT expenses on caregiver employment status (Total n=257)
Fig. 4.
Association between caregiver’s monthly income level and Impact of HCT expenses on selling assets by caregivers (Total n=257)
Fig. 5.
Association between caregiver’s monthly income level and Impact of HCT expenses on borrowing money by caregivers (Total n=257)
Fig. 6.
Association between caregiver’s monthly income level and Impact of HCT expenses on get a bank loan by caregivers (Total n=257)
Discussion
The objective of this study was to evaluate the financial burden of bone marrow transplantation in pediatric patients from the perspective of their caregivers. The study clearly indicates that the financial burden of bone marrow transplantation is very substantial in Iran. Households have been forced to sell their assets to cover transplant costs. Majority of households have borrowed to cover transplant costs, and have taken out bank loans. More than 90 %of households have saved on unnecessary living expenses due to transplant costs, and had to spend all their savings to cover their expenses. In addition, following the treatment process and numerous travels from city of residence to medical center has affected the employment of families and, consequently, their income. In 87% of households, bone marrow transplantation has affected the caregiver's employment. Therefore, based on the results of the interviews with the patients’ caregivers, it is clear that the financial burden of transplantation in Iran is very high and it is more than households can afford. A very small number of households of the study were capable to afford HCT costs without undergoing significant financial pressure. Therefore, our findings reinforce the need for revising the health policies in the field of transplantation and increasing governmental support for more vulnerable households. Analytical results indicated that the financial burden on families varies based on the educational attainment of the caregiver, and the caregiver's monthly income. In way that lower educated families had to take leaves more and became parttime job or unemployed. Individuals with lower monthly income more had to take loan from the bank or others. In addition, Individuals with lower incomes are more prone to selling their assets to afford HCT costs.
The financial hardships faced by families undergoing pediatric hematopoietic stem cell transplantation have not been extensively researched. However, numerous studies confirm our findings that bone marrow transplantation imposes a substantial financial burden on families globally. This issue is particularly noticeable in low- and middle-income countries, with poorer families experiencing even greater hardships.
In the United States, 73% of respondents stated that their illness affected them financially. 33% of participants said they had to pay more for treatment than they could afford. 32% of people said they had enough money to pay for medical treatment. Regarding the impact of transplants on household income, 26 % of participants said that their household income had declined. 1 % of participants had to sell to their house to pay for HCT expenses. 3% of participants have declared bankruptcy. 25% of people were forced to withdraw money from their retirement accounts [13]. A comparison of some results of this study with our study indicates that the financial burden of HCT was higher in Iranian patients. In our study, only 1% of those interviewed were able to afford medical treatment without borrowing money, getting a loan, selling or exchanging assets. Similar to our findings, this study highlighted that caregiver often borrowed money and faced increased out-of-pocket costs due to transportation and dietary needs.
Moreover, another study indicated that employment disruption was a significant factor contributing to financial distress among caregivers, with 87% reporting a negative impact on their employment status. The survey of caregivers revealed that most household wage earners adjusted their work schedules for medical appointments, leading to missed workdays and income loss for 87% of families—31% facing reductions exceeding 50% [20]. This aligns closely with our findings in Iran, where 87% of households also reported that BMT affected caregiver employment. The implications of employment disruption are profound; caregivers often face reduced household income while simultaneously incurring high medical costs.
A systematic review demonstrated that between 15% and 59% of patients experienced financial burdens, frequently incurring out-of-pocket expenses for clinical appointments, prescription and non-prescription medications, and travel. This financial strain was linked to a decline in quality of life and was more prevalent among those living in metropolitan areas [21].
In another study examining the financial burden on caregivers of pediatric hematopoietic stem cell transplant recipients, 64% of the 99 survey participants reported experiencing significant financial toxicity. Those facing high financial toxicity were more likely to incur costs related to transportation and diet. This financial strain was linked to nearly all cost-coping behaviors, such as borrowing money. Additionally, high financial toxicity was associated with increased reliance on hospital financial support and transportation assistance [22]. A study from China indicated that the cost of hematopoietic stem cell transplantation (HSCT) could exceed three times the per capita GDP, placing a substantial financial burden on families [23].
In a study in new England Material hardships, such as food, housing, or energy insecurity, were reported by 17 families (38%) in the cohort. Low-income families faced disproportionate income losses related to transplantation, with 7 families (39%) experiencing annual income reductions of over 40%, compared to 2 wealthier families (18%) [24].
A comparable study conducted in the United States examined the financial burden associated with allogeneic transplantation. The findings revealed that some individuals were compelled to borrow money, withdraw from pension accounts, sell their homes, or even file for bankruptcy due to the high costs of transplantation. This study was qualitative in nature, so it did not provide specific statistics on the frequency of bankruptcies or the number of individuals forced to borrow or liquidate assets. However, the results indicated that approximately one-quarter of respondents utilized various resources, such as charities, assistance from friends and family, bank savings, pension funds, and employer benefits, to help cover transplant expenses [15]. This number was much lower than the results of our study. In our study, almost half of the people have used the help of charity organizations.
Therefore, as a comparison of the results of the study with similar studies, it is clear that the low cost of transplantation in Iran does not mean less financial burden imposed on Iranian households. In fact, Iranian households underwent more financial burden. The significant financial burden observed in our study can be attributed to several factors. The Iranian healthcare system may lack comprehensive coverage for BMT procedures, leading families to bear a larger share of costs compared to countries with more robust health insurance systems. Iran's economic challenges exacerbate the situation. High inflation rates and limited access to financial resources make it difficult for families to manage unexpected medical expenses. The absence of structured financial support services or programs tailored for families undergoing BMT can leave them vulnerable to financial distress. However, all these reasons require further investigation and additional studies.
Strength and limits
Despite the fact that bone marrow transplants have been performed in bone marrow transplant centers in Iran since 1991 [19], unfortunately, the available economic studies in the field of bone marrow transplantation are very limited. Based on our knowledge our study was the first to assess financial burden of HCT on patients’ caregivers in Iran. Our study provided grand views and critical information about the economic burden on caregivers and it could be a turning point in further economic studies of bone marrow transplantation. The study's setting at Shariati Hospital enhances our study’s generalizability, as this facility is the leading referral hospitals in the country, serving patients from various cities and rural areas nationwide. Consequently, the findings of this study can be applied to the broader population across the country. In addition, the use of consistent treatment protocols ensures comparability of outcomes across different patient groups. The hospital is equipped with the resources needed to conduct. Moreover, the checklist used to interview patients about the financial burden on families was meticulously developed through a series of meetings to review the content and gather input from experts, ensuring that all aspects of the financial burden were comprehensively addressed.
There were several limitations in our study. A cross-sectional survey potentially resulting in recall bias and reporting bias are limitations of our study. It is possible that respondents have exaggerated in their responses, because they may think that their responses may impact on their charity coverage or their HCT costs. However, we completely explained purpose of the study for the respondents. This was a single institution study and results may differ in other HCT centers, however patients who come to Hematology-Oncology and Stem Cell Transplantation Research Center are from all around the country, therefore population of the study is not limited to one city.
Conclusion
In this study, the financial burden has been evaluated through a survey. This research underscores the substantial economic implications associated with bone marrow transplantation in Iran. Households have been compelled to liquidate their assets in order to finance the costs associated with transplantation procedures. Despite the lower costs compared to other countries, the financial burden of pediatric bone marrow transplantation remains a major challenge in Iran. Further efforts are needed to reduce this burden and improve access to this life-saving treatment.
Supplementary Information
Acknowledgements
We would like to express our sincere gratitude to all the parents who participated in this study and shared their experiences with us. We also thank the staff of Hematology-Oncology & Stem Cell Research Center of Shariati Hospital for their cooperation and support.
Authors’ contributions
Study design: OS, AA, SA. Data acquisition: OS, EH. Data analysis: EH, OS. Data management: OS, AA. Statistical analysis: OS, EH. Data interpretation: OS, EH, AA, SA. Drafting of the manuscript: OS, EH. Revision of the manuscript content: OS, AA, SA, EH. All authors reviewed the manuscript.
Funding
This study has no funding.
Data availability
No datasets were generated or analysed during the current study.
Declarations
Ethics approval and consent to participate
This study was approved by the Ethics Committee of Tehran University of Medical Sciences (IR.TUMS.TIPS.REC.1398.063). The foremost ethical consideration was to ensure that potential participants were informed that their participation was voluntary and that their decision to participate or not would have no bearing on their treatment. A second ethical consideration was the protection of participants’ personal information. To this end, names and other identifying information were not recorded in the questionnaire, and numerical codes were used in place of participants’ names.
Consent for publication
Not applicable.
Competing interests
The authors declare no competing interests.
Footnotes
Publisher’s Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
Data Availability Statement
No datasets were generated or analysed during the current study.






