Analysis of Economic Burden on Person with Hemophilia Observational Study

Research Article

Austin Hematol. 2024; 9(1): 1051.

Analysis of Economic Burden on Person with Hemophilia – Observational Study

Sandeep Kumar1; Smati Sambyal2; Varun Kaul3; Mohit Kumar4*

1F1 Assistant Professor, University College of Physiotherapy, Baba Farid University of Health Sciences, Faridkot, India

2Assistant Professor, University College of Physiotherapy, Baba Farid University of Health Sciences, Faridkot, India

3Associate Professor, Department of Pediatrics, Guru Gobind singh Medical College, Baba Farid University of Health Sciences, Faridkot, India

4MPT Orthopedics, University College of Physiotherapy, Baba Farid University of Health Sciences, Faridkot, India

*Corresponding author: Mohit Kumar MPT Orthopedics, University College of Physiotherapy, Baba Farid University of Health Sciences, Faridkot, India. Email: mohitmehta075@gmail.com

Received: May 20, 2024 Accepted: June 10, 2024 Published: June 17, 2024

Abstract

Background: In India, there is lack of national policy for the prevention and control of genetic illness. As Hemophilia is a rare genetic disorder that poses significant health challenges, it also imposes a substantial economic burden on healthcare payers, Person with Hemophilia (PwH), caregivers and society. By delving into the economic impact of hemophilia, this study uncovers the hidden costs that go beyond the immediate medical expenses. Thus, the present study aims to evaluate the economic burden on PwH and their caregivers.

Methods: A total 25 PwH were included in the study. The economic burden on both PwH and caregivers were evaluated using a standard performa consisted of different parameters that includes direct healthcare costs; indirect healthcare costs and impact of hemophilia on academic attendance of school going children. The time frame of the study was from December 2022 to February 2023.

Results: The mean total (direct and indirect healthcare) cost of (n=25) PwH was ₹ 103,894.36/- (median = ₹ 29,640/-) (IQR = ₹ 19,574.5/- to 74,190/-).

Conclusion: The study concluded that hemophilia is a costly disorder; driven not only by its high direct medical expenses but also by its significant indirect healthcare costs.

Keywords: Economic burden, Direct healthcare cost, Hemophilia, Indirect healthcare cost.

Abbreviations: PwH: Person with hemophilia

Introduction

Genetic disorders are rare conditions with a low public health priority in India, despite the fact that they cause huge suffering for patients and their families [1]. Beyond the clinical challenges experienced by person with hemophilia (PwH), this condition also imposes a significant financial burden on healthcare providers, PwH/caregivers, and society at large [2]. Treatment for hemophilia is centred on the episodic (on demand) or prophylactic (regular basis) infusion of FVIII or FIX concentrates to stop bleeding. Inhibitor development makes management of PwH more challenging and increases the risk of morbidity, severe bleeding, and disability. This significantly affects the quality of life of PwH and healthcare costs in comparison to non-inhibitors [3].

The management pattern in hemophilia has changed the once-mortal disorder into chronic but potentially well managed condition through the use of clotting factor and prophylaxis therapy [2]. It is important to understand the costs involved with hemophilia treatment from both payer and society perspectives given the high costs of clotting factors, the rising usage of prophylaxis, and novel extended half-life factor concentrate [4]. A small number of recent studies have examined the direct non-medical cost and indirect healthcare costs, which make up a smaller fraction of total direct costs but place a significant burden on PwH, their caregivers and society [4-6]. Based on this complex and changing scenario, this study aimed to analyse the current socioeconomic burden of PwH and caregivers.

Material and Methods

A total of 25 subjects were recruited in the present study, out of which, 12 were children with age between 2-17 years and 13 were adults with age >18 years.

Subjects included males aged between 2 to 45 years who had been diagnosed with hemophilia A or hemophilia B with or without inhibitor, currently receiving on demand factor replacement therapy for hemophilia. Whereas other bleeding disorders like Von Willebrand disease, females diagnosed with haemophilia, subjects on prophylaxis and subjects with no bleed, in this period, were excluded from the study.

The economic burden on both PwH and caregivers was evaluated using a standard performa which consisted of different parameters such as direct healthcare costs (of clotting factor, drugs, specialist visits and hospitalization); indirect healthcare costs (included transportation, loss of wages) and impact of haemophilia on academic absenteeism of school going hemophilic children. The data collected over a three-month period was consolidated and the statistical measures of mean (median, Interquartile Range - IQR) were computed for various parameters.

Results

Cost Analysis: The mean total (direct plus indirect) cost of (n=25) PwH was ₹ 103,894.36/- (median = ₹ 29,640) (IQR = ₹ 19,574.5 to 74,190)

The total mean cost per employed subject (n=7) was ₹50,057.14/- (median = ₹ 32,700) (IQR = ₹ 20,990 to 94,990), for children (n=12) was ₹ 161,252.41/- (median = ₹ 19,624.5) (IQR = ₹ 18,630 to 82,400) and for unemployed subject (n=6) was ₹ 51,988.33/- (median = ₹ 38,600) (IQR = ₹ 23,062.5 to 71,080).

School/work Absenteeism

The average loss of working days of employed PwH (n=7) was 17.57 days, average loss of working days of caregivers of unemployed PwH (n=6) was 18 days and caregivers of children (n=12) was 16.25 days in 3 months.

The average school absenteeism of school going hemophilic children (n=8) was 23.25 days. Also, two children left school because of financial issues.

Specialist Visits and Hospitalization

The PwH with specialist visits included (n=25) visits to Pediatrician/General practitioner, (n=10) visits to physiotherapist, (n=2) visits to orthopedician, and (n=1) visit to dentist.

Overall, 24% (n=6) of PwH were hospitalized, out of which 20% (n=5) were children and 4% (n=1) were employed PwH. The mean length of hospital stays for those who were hospitalized (n=6) was 4.8 days.

Discussion

In this study, the primary focus was on understanding the economic challenges faced by Person with Hemophilia (PwH) and their caregivers. The assessment involved analyzing various parameters, including both direct and indirect healthcare costs, as well as the impact of hemophilia on academic attendance of school going children. The financial burden was significantly influenced by high medical expenses associated with hemophilia, such as clotting factors, hospitalization, and specialist visits. Additionally, indirect costs like medical transportation and the loss of working days for both PwH and their caregivers further exacerbated the economic strain.

A study with a sample size (n=212) of PwH revealed a mean total cost (direct plus indirect) of $195,332, with a median of $139,571 [4]. However, in the present study with a sample size of 25 PwH, the mean total cost was notably lower, at $1,266.73 (cost converted into U.S $), with a median of $361.39 (cost converted into U.S $).

Moreover, the impact of hemophilia extended beyond the PwH, affecting their parents or caregivers. A different study found that parents missed an average of 3.2 days of work annually due to their child’s hemophilia, while among adults, the average work absenteeism was 16 days [4]. In this study, we observed that the average loss of working days for caregivers of children (n=12) was 16.25 days, for unemployed PwH (n=6), it was 18 days and for employed PwH (n=7) experienced an average loss of 17.57 working days.

The employment status among adult PwH also posed a significant concern. In a separate study, out of 47 PwH in the 18+ age group, 24 (51%) were unemployed [7]. Correspondingly, in this study, out of 13 adults with hemophilia, 6 (46%) were unemployed.

The impact of hemophilia on education was also notable. In a different study, the average number of school days lost or absenteeism due to bleeding episodes was reported to be 19.2 days [1]. Present study found a similar trend, with an average school absenteeism of 23.25 days in three months (n=8).