Globally PICU admissions are the most expensive and cause a major disruption to the financial dynamics of families of patients. India, being a lower middle-income country, this financial burden incurred is significantly higher than family income and inevitably leads to the deterioration of already poor classes. In our study, 70 families were studied and their OOPE for the first 5 days of PICU admission were documented. Of these 70 children, the majority 38.57% children belonged to the age group 1–5 years followed by 6–12 years consisting 34.29% of children. A study done by Wasserfallen J et al. [3], shows that the children’s mean age was 2.9 ± 3.8 years. This value is less than the mean age in our study. In our study, for 71.43% of children, mechanical ventilation was not required. Mechanical ventilation was required in only 28.57% of children. A study done by Kaur et al. [8] shows that about 55.9% of patients required mechanical ventilation and the remaining 44.1% of patients do not require ventilation. This study shows that there is more demand for mechanical ventilation as compared to our study.
In our study, the majority of children about 55.71% were not enrolled under any government scheme. In our study, the mean value of the cost of medicine, investigations, PICU charges, and total medical cost in rupees was 1501.57 ± 3742.76, 527 ± 1049.4, 552.86 ± 485.95, and 2525 ± 4035.28 respectively. This showed that out of total medical costs, the largest contributor was the cost of medicines (59%) followed by others. A study done by Kaur et al. [9] shows that the total mean cost per patient treated and per bed-day in the PICU was found to be US$ 2078 (₹144,566) and US$ 415 (₹ 28, 871) respectively. Of this, the mean health system cost per patient and per bed day was US$ 1731 (₹120,425) and US$ 346 (₹24,071) respectively. 80% of the total cost incurred by a patient when cared for in PICU was borne by the hospital and only 20% by the patient. A major share of OOP expenditure was contributed by medicine and consumables(79%). Being a public health care facility, patients are provided drugs free of cost so a large OOPE on medicines was not expected. According to National Health Accounts for India (2013–2014), an estimated ₹ 1331 per capita was spent on medicines, while households alone contributed ₹ 1200, i.e., 90% of all medicine expenditure in the country [10]. Severe underspending by several state governments with many reportedly spending less than 5%, leads to inadequate drug procurement and inefficient supply chains [11]. This finally leads to acute shortages of key essential medicines in public health care facilities causing a rise in OOPE. In our study, the mean value of travel, meals, incidental expenses, total non-medical cost, and caring for siblings in rupees was 711.43 ± 469.52, 761.43 ± 486.5, 728.57 ± 383.69, 2234.29 ± 846.84, and 26.43 ± 128.74 respectively. A study done by Wasserfallen J et al. [3] in Switzerland carried out in a very different system and setting, the two most important cost categories were meals and travel i.e., the non-medical OOPE. The results showed that over the whole hospital stay, families spent an average of Euro 2720 as direct out-of-pocket expenses for visiting/staying with their hospitalized child. Families spent an average out of-pocket amount of Euro 57 per day or Euro 1710 per month for travel and/or meals and communication costs. This is a very heavy burden for them which may be worsened by additional significant loss of earnings. In our study, the mean value of total out-of-pocket expenses incurred per day (rupees) on day 1, day 2, day 3, day 4, and day 5 was 1304 ± 587.2, 1208.86 ± 3773.84, 814.57 ± 565.03, 807.71 ± 522.76, and 699.86 ± 807.02 respectively. Comparing individual OOPE on each day leads to the conclusion that the first 2 days of the PICU admission incurred significant costs compared to days 3, 4, and 5. In our study, the mean value of total out-of-pocket expenses (rupees) was 4770 ± 4039.75. A study done by Kaur et al. [8], shows that the mean out-of-pocket expenditures for treatment in PICU was US$ 352 (95% CI 315–390). Medicines and consumables accounted for a major share of out-of-pocket expenditure, i.e., 79%. Mean out-of-pocket expenditures per patient and per patient bed day were US$352 (₹ 24,535) and US$70 (₹4897). Mean out-of-pocket expenditures for ventilated patient was significantly higher than a non-ventilated [US$ 466 (₹32,482) vs US$ 208 (₹14, 482); p < 0.001]. Similarly, the OOP expenditure in patients with a PICU stay of ≤ 2 days was US$ 210 (₹14,653), which was almost one-third of the OOPE among patients with a PICU stay of > 2 days, i.e., US$ 503 (₹ 35,032). The OOPE per patient constituted approximately 20% of the total PICU cost per patient. Compared to international standards OOPE in our study appears to be low. However, most of them were in lower socioeconomic strata and had low purchasing power. So, to quantify the financial burden in effective terms how much % of the daily budget of the family was spent in the form of OOPE as a result of PICU admission was calculated. This gave a better perspective of the financial burden in relation to their income levels. Families participating in the study were stratified according to the monthly income in 3 groupings: (1) from 0 to Rs. 15,000/- per annum, (2) From Rs. 15,000/- to Rs. 100,000/- per annum, (3) more than 100,000/- per annum. In our study, the family monthly income of 54.29% of children was more than 100,000/- per annum followed by Rs. 15,000/- to Rs. 100,000/- per annum in 41.43% of patients. Findings in our study suggest that a PICU admission resulted in catastrophic health expenditure for all families. Findings show that the monetary sum spent might be the same for the different income groups. However, it effectively translates into a much higher financial burden for lower socioeconomic classes and remains a major cause for their further deterioration. A poor household paying 1000 Rs. could mean pulling a child out of school or foregoing a meal, whereas a richer household spending the same amount would have no immediate consequences. In our study, the mean ± SD of daily expenditure/daily budget (%) in patients who did not require mechanical ventilation was 386.71 ± 301.07 and who required mechanical ventilation was 309.2 ± 165.64 with no significant association between them (p value = 0.282). This was in contrast to a study done by Kaur et al. [8], which showed that the OOPE in a ventilated patient was double that of a non-ventilated child. Mechanical ventilation requires increased diagnostic and therapeutic procedures, invasive monitoring, and drugs and other consumables, thus escalating the cost per patient. Shweta et al. [11] had shown that at all levels of care, the most expensive were those requiring mechanical ventilation. In our study, the majority of family members constituting 91.43% had to stay away from work for 5 days followed by 3 days in 7.14% of patients. Only 1 family member had to stay away from work for 2 days. These showed that the majority of the families experienced the loss of earnings directly as a result of the hospitalization of a child. A study done by Kaur et al. [8] shows that length of ventilation and PICU stay correlated with out-of-pocket expenditure; average out-of-pocket expenditure in a patient with PICU stay of < 2 days was almost one-third of the average cost of patients with a PICU stay of > 2 days. Compared to the cost of intensive care in developed nations, ICU costs are low in developing countries. A study from a teaching university hospital in Thessaly, Greece, done by Geitone et al. [12] showed the mean actual cost per ICU patient to be ∈ 16,516 (INR13,86,683), actual reimbursement from social funds was only ∈ 1671. The low cost of ICU care in India is partly attributed to the low cost of drugs, recycling of consumables, and lower staff salaries. Two disease-specific studies were published. The first addressed the psychosocial and economic problems of parents of children suffering from epilepsy in India. A structured questionnaire administered to parents of 50 children aged 5 to 10 years and suffering from epilepsy of more than one year’s duration showed a decline in social activities in 80% of the parents, a significant impact on daily routines in over 75%, and financial difficulties in 60%. A study done by Madsen H et al. [13], shows that the average illness cost per illness episode at a secondary care center was 41.34$ out of which 68% was medical cost, 20% was non-medical cost and the remaining 12% was loss of income. The average illness cost per illness episode at tertiary care center was 134.62$ (INR 10,214) out of which 79.5% was medical cost, 16% was non-medical cost and the remaining 4.5% was loss of income. There are a few limitations to our study. The study was carried out at a single center. In view of decreased admissions due to the Covid pandemic, there was a small sample size and a limited period of evaluation. In addition, it did not study the reasons behind families spending decisions and coping strategies for financial burdens. Therefore, this type of study should be repeated on larger samples and different hospitalization settings, i.e., both public and private. However, the financial burden expressed in this study is troubling and warrants an urgent need to provide help for families of children admitted to PICU.
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