Economic evaluation of cerebral palsy in a resource-challenged setting

Umar Isa Umar; Halima Adamu; Ali Abdulkareem

doi:10.4103/njbcs.njbcs_40_19

ORIGINAL ARTICLE

Year : 2020 | Volume : 17 | Issue : 1 | Page : 50-56

Economic evaluation of cerebral palsy in a resource-challenged setting

Umar Isa Umar¹, Halima Adamu², Ali Abdulkareem³
¹ Department of Pediatrics, Consultant Pediatrician and Senior Lecturer, Aminu Kano Teaching Hospital, Bayero University, Kano, Nigeria
² Department of Pediatrics, Consultant Pediatrician, Aminu Kano Teaching Hospital, Kano, Nigeria
³ Department of Economics, Senior Lecturer, Bayero University, Kano, Nigeria

Date of Submission	24-Dec-2019
Date of Acceptance	17-Feb-2020
Date of Web Publication	30-May-2020

Correspondence Address:
Dr. Umar Isa Umar
Department of Paediatrics, Bayero University, P. M. B. 3011, Kano
Nigeria

Source of Support: None, Conflict of Interest: None

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DOI: 10.4103/njbcs.njbcs_40_19

Abstract

Context: Cerebral palsy is a problem with a high prevalence in Africa and requires a life-long care. It is associated with high treatment cost and disruptions in the social life of caregivers. Aims: To evaluate the costs of care among some selected children with cerebral palsy in the resource-challenged setting. Settings and Design: A cross-sectional study. Materials and Methods: Prevalencebased costs were stratified by patients' socio-demographic characteristics and socioeconomic scores (SES).The “bottom-up” and “human capital” approaches were used to generate estimates on the direct and indirect costs of 100 patients with cerebral palsy. Statistical analysis used: All estimates of the financial burden of cerebral palsy were analyzed from the “patients' perspective” using IBM SPSS statistics software, version 23. Results: Onehundred children aged between 6 and 180 months were recruited, 62.0% males and 38.0% females with a male to female ratio of 1.6:1. The majority (79.0%) resides in an urban setting and 45.0% are within low socioeconomic class (Ogunlesi SES IV and V). The total cost of cerebral palsy care per month was ₦3,702,612.6 ($10,285.04) with a mean cost per patient per month of ₦37,026.1 ($102.85). The total direct cost of care per month was 77% of the total monthly cost, while the indirect cost per month was 23%. Medications/drugs are the principal cost drivers, comprising approximately 45.0% of the total direct costs per month. The total annual cost was ₦44,431,351.2 ($123,420.42) with a mean yearly cost per patient of ₦444,313.5 ($1,234.20). Conclusions: The study provided a preliminary estimate of the high cost of care borne by the family in the treatment of childhood cerebral palsy. The indirect cost is the principal cost driver of the total cost incurred by the family..

Keywords: Cerebral palsy, cost, resource-challenged, setting

How to cite this article:
Umar UI, Adamu H, Abdulkareem A. Economic evaluation of cerebral palsy in a resource-challenged setting. Niger J Basic Clin Sci 2020;17:50-6

How to cite this URL:
Umar UI, Adamu H, Abdulkareem A. Economic evaluation of cerebral palsy in a resource-challenged setting. Niger J Basic Clin Sci [serial online] 2020 [cited 2023 Jun 10];17:50-6. Available from: https://www.njbcs.net/text.asp?2020/17/1/50/285471

Introduction

Cerebral palsy (CP) is a neurodevelopmental condition occurring at birth or in early childhood and persisting throughout the individual's life.^[1] It is a nonprogressive motor impairment affecting the patient's physical and often intellectual performance.^[1] CP is a common problem in children worldwide but the prevalence is higher in Africa, between 2 and 10 per 1,000 live births,^[2] while the prevalence in developed countries is between 2 and 3 per 1,000 live births.^[3] It is a lifelong problem requiring lifelong attention and care, and this may have serious implications in terms of cost and social life of the patient and caregivers. The management for CP includes various therapies, involving speech and physical therapy, as well as learning to use any sort of assistive device. In most cases, there is a need for the provision of special education at school and medication for some associated problems such as seizures, spasticity, and hearing or visual impairment.

Assessment by the Centers for Disease Control (CDC) estimated the lifetime costs of children in the United States with CP to be $921,000.0 (₦331,560,000) in 2003.^[4] Some of these costs include doctor visits, hospital stays, assistive devices, and home or automobile modifications. However, indirect costs play a bigger role in determining these estimated costs. They include things like productivity losses at work and home when someone with CP dies prematurely, stops working or reduce their work hours, or has been unable to work entirely. In China, the lifespan total economic loss due to CP cases in 2003 amounted to $2–4 billion.^[5] While in Australia, the burden of CP was as high as $3.9 billion in 2007.^[6]

The few European studies in the field have focused on components such as hospital unit costs. Beecham et al. calculated average costs per annum for young adults with hemiplegia from CP in the UK to be £12,500 (₦5,875,000), of which 43% (£5,600 (₦2,632,000)) was attributable to the impairment.^[7] A recent Dutch study focused on children with severe CP found the annual costs to be €40,265 (₦16,106,000) per child.^[8]

The prevalence of CP in South Korea was 2.6 per 1,000 children. The attributable lifetime medical cost of CP in South Korea was calculated to be $26,383 (₦9,497,880), which is 1.8 times the basic lifetime medical cost of the general population ($14,579) (₦5,248,440).^[9]

The severity of CP is, of course, going to predict long-term costs, along with life expectancy. Walking ability, quality of speech, hand function, and intelligence quotient can make or break employment opportunities. There is a paucity of information on this subject matter in our environment despite the high burden of the problem in our society.^[10] Based on this, the study aimed to evaluate the average cost of CP per individual attending a neurology clinic in Aminu Kano Teaching Hospital (AKTH). The importance of this cost-of-illness assessment is to inform planning decisions about social policy and cost of health because the magnitude and breakdown of costs incurred by a person with chronic illness are relevant for planning health and social policy.

Materials and Methods

The study was a cross-sectional survey, conducted in the Paediatric Neurology Clinic of AKTH, a tertiary health facility located within Kano metropolis in Kano State, Northwestern province of Nigeria, from July 5, 2018 to April 25, 2019. One-hundred clinic attendees were enrolled, aged 6 months to 15 years, using systematic random sampling where the initial subject in each clinic day was chosen by simple random method, and subsequently the selection of every second patient until the required number for the day was selected. All enrolled subjects have satisfied the inclusion criteria with an established diagnosis of CP. The inclusion criteria included patients who have exhibited features required for the diagnosis of CP and have utilized a form of health facility in the last 2 months prior to presentation, and gave written informed consent from their parents/caregivers or have assented in children old enough to give it. Patients whose diagnosis of CP could not be determined clinically or who have refused to give consent or assent, or who have not utilized any form of health service in the past 2 months, and who are on any form of health insurance were excluded from the study. To reduce recall bias, the cost of illness for CP was estimated for the last 2 months, and the average expenditure was calculated and used in the analyses.

To generate direct and indirect costs (productivity losses), estimating the “bottom-up approach” and “human capital approach” was used, respectively.^[11] The cost of illness was analyzed from the “patients' perspectives,” that is, captured cost estimates of the types of health care, social services, and family resources used on patients without regard to individuals or entities that incurred them.^[12] Direct costs of illness included expenditures incurred for medical goods and services, that is, medications, consultation fees, investigations, and other diagnostic procedures. They are further classified into direct medical and direct nonmedical costs depending on whether or not the resources were expended directly in the production of a service or treatment. The direct nonmedical costs also included items such as transportation to clinics, their feeding, lodging, telecommunication bills, home modifications, and other social services. Economists consider health to be a human capital investment and its value is measured in terms of its contribution to production activity and national income.^[13] Therefore, indirect cost estimates were based on the human capital approach, which used the data from the labor markets (i.e., lost school or workdays multiplied by the wage rate). Indirect costs or productivity losses are the labor earnings foregone because of adverse health outcomes, that is, the value of the time spent when unable to work as productively because of an illness or drug side effects. The decreased productivity can result from a patient's illness, death, drug side effects, time spent receiving treatment, and school or work absenteeism. It also includes lost earnings while traveling to the health care facilities or productivity losses associated with a caregiver's time. The official Naira exchange rate to one US dollar (USD) averaged ₦360.0, one UK pound sterling averaged ₦470.0, and one euro averaged ₦400 over the 9-month study period.

The study also used the socioeconomic scoring of educational qualification and occupation by Ogunlesi and colleagues into classes I–V.^[14] The scores were awarded for the highest level of education and occupation of each parent, and the mean of these four scores to the nearest whole number was the socioeconomic score (SES) assigned to each child:

Class I: High-level skilled worker/professional/business man/manager/large-scale trader/contractor
Class II: Senior government employee
Class II: Junior government employee/middle-scale trader/high-scale farmer/religious or community leader and clergy/retiree/teacher/technician
Class IV: Artisan/security agent/sentry
Class V: Unemployed/student/apprentice/subsistence farmer/driver/motorcyclist/laborer/messenger/low-level skilled worker.

The educational levels attained were scored thus:

Class I—University and postgraduate certificates
Class II—School certificate (ordinary level GCE) plus teaching or other professional training certificates
Class III—Ordinary level GCE West African School Certificate, grade 2 teachers or equivalent
Class IV—Modern three and equivalent certificates, for example, JSS 3
Class V—No formal education.

Classes I and II were further assigned to the “high social class,” class III to the “middle social class,” and classes IV and V to the “lower social class.” Cost of illness (COI) = number of episodes × (direct cost per episode + indirect cost per episode) Number of episodes is (under 15 years population × incident rates) Population of <15 years in Kano = 2,168,726^[15] Incident rate = 42.4/100,000/year ^[10]

Ethical approval

AKTH research ethics review committee approved the study. All patients or their surrogates completed a written informed consent prior to the interview, and the provisions of the Helsinki declaration respected throughout the period of study.

Data analysis

Data collected were analyzed using the Statistical Product for Service Solution (SPSS) for Windows version 23 (SPSS Inc. IBM, Armonk, NY). Continuous variables, such as age, (days/months/years) were summarized using descriptive statistics like mean, median, and standard deviation. Categorical data were described as frequencies, ratios, and percentages. The presence of significant statistical differences in cost between sociodemographic variables was determined using a t-test of equality of means or F-test using one-way ANOVA where appropriate. A P value < 0.05 was considered significant after two tails.

Results

During the study period, 100 children aged between 6 and 180 months were recruited. There were 62 (62.0%) males and 39 (38.0%) females with a male to female ratio of 1.6:1. Eleven children (11.0%) were less than 12 months of age, 40 (40.0%) were between 12 and 35 months of age while 22 children (22.0%) were between 36 and 59 months of age. There were 24 children (24.0%) aged between 60 and 119 months and three children (3.0%) aged between 120 and 180 months [Table 1].

Table 1: Sociodemographic characteristics of the children with cerebral palsy (n=100)

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The study population consisted of Nigerian children drawn from various ethnic groups; the major were Hausa (94%), few from Igbo (2.0%) and other ethnic groups (4.0%) (Fulani, Kanuri, Igala and Biron). The majority of the children (37.0%) belonged to the middle socioeconomic class 3, 45 (45.0%) belonged to the lower class, while 18 (18.0%) belonged to higher socioeconomic class [Table 1]. The majority of the participants (79.0%) reside in an urban setting and (40.0%) live in a mudhouse with cement plaster while some (32.0%) live in single/double apartment shared with others. Spastic and mixed forms are the commonest types of CP with 34.0% and 33.0%, respectively. The source of financial support was mainly from the fathers (94.0%), and 44 (44.0%) believed that the disease is caused by birth asphyxia followed by jaundice (22.0%). Half of the children have more than one associated problem followed by those children that (48.0%) have a single associated problem and (2%) with no associated problem [Table 1].

The total annual cost was ₦44,431,351.2 ($123,420.42) with a mean yearly cost per patient of ₦444,313.5 ($1,234.20). The total cost of CP care per month was ₦3,702,612.6 ($10,285.04) with a mean cost per patient per month of ₦37,026.1 ($102.85). Further breakdown of the monthly health care expenses from the study showed that the total direct cost of care per month was ₦855,541.00 ($1861.50) and the mean cost per patient per month was ₦8,555.4 ($18.62), while the indirect cost per month was ₦2,847,071.6 ($6908.53) with a mean cost per month of ₦28470.7 ($69.09), [Table 2]. The indirect cost comprises 76.9% of the total costs incurred every month, [Figure 1]. Medications/drugs are the principal cost drivers with an estimated cost per month of ₦387,634.00 ($3,876.3), comprising approximately 45.0% of the total direct costs per month. This is followed by the cost of physiotherapy (₦185,400.00 [$515.00]) comprising 22.0% of the total direct cost.

Table 2: Cost of care for cerebral palsy

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Figure 1: Cost of care per month of cerebral palsy

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The costs of care per month when stratified by sociodemographic variables showed a monthly cost that was higher in females, in those aged 36–59 months, residing in an urban area, belonging to socioeconomic class I, with a mixed form of CP and in those with multiple associated problems. A one-way ANOVA was statistically significant for three sociodemographic variables; socioeconomic class F(3, 49) = P- 0.01, place of residence F(3.03) = P- 0.021, and source F(29.3) =P- 0.001. Thus, the cost of care for childhood CP based on the social class, place of residence, and source of financial support was significant. However, no significant difference was found between other sociodemographic variables and the cost of care of CP [Table 3]. The economic burden of CP in Kano is estimated as ₦3.404 billion (USD$9,457,497.0) [Table 3].

Table 3: Cost according to the sociodemographic factors of children with cerebral palsy

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Discussion

The cost of care for children with CP in this study, when considered by the economic situations during the study, was high. However, the total annual cost when compared with what was reported from developed countries shows that our figure was much lower when compared to the cost of raising a child with CP from the USA, the UK, and the Netherlands.^[4],[7],[8] This could possibly be explained by the unavailability of cost-intensive diagnostic tools for CP, sophisticated medical therapy, and other long-term supportive services in this part of the world. Additionally, in estimating the total indirect cost in our study, we considered only the indirect cost due to productivity losses by caregivers, we did not include productivity losses by the children and other intangible costs.

It is noteworthy, however, that indirect cost in this study contributed significantly (77%) to the total cost. This is in keeping with reports from Europe and the US that showed indirect costs as the predominant cost driver.^{[4],[16],[17]} However, their indirect cost is much higher than our finding; the reason being that we only considered productivity losses by parents or caregivers, while other related studies on developed countries considered productivity losses by both caregivers and the patient and other financial forfeitures related to the disorder. The difference may also be attributed to the higher cost of labor and services in such developed societies when compared to our resource-challenged settings.

We found the cost of medications as the single most important cost driver for direct costs, amounting to 45% of the total direct cost per month. This could be explained by the multiple medications prescribed for the patients as 50% of the patients have more than one associated problem. In addition, the high cost of foreign exchange adds to the cost for the purchase of these medications as our country relies heavily on the importation of these medications.

The estimated economic burden of CP in Kano is quite huge as the amount is about 76% of Kano state 2018 GDP.^[18] This financial burden is incurred by families of children with CP through the out-of-pocket payment as no free medical services at our government hospitals and health clinics. Therefore, there is a need for our governments to find ways of easing this huge financial burden on individual families through effective health insurance coverage to all families in the country, provision of free medical services to CP patients or economic empowerment of caregivers in the form of microcredit programs that may lead to a reduced financial burden. Even though our estimated economic burden is huge but is low when compared to the burden in some developed countries.^{[4],[5],[6],[7]} The supportive care CP patients receive in these countries is far more than what they receive in our hospital.

Our study also showed that transport and lodging costs spent during each clinic visit per month were quite insignificant as most of the patients reside within the metropolis. There is no significant difference in the average cost per patient per month across gender, age group, ethnicity, type of CP, perceived cause of CP, and a number of associated problems. By sociodemographic characteristics, our study showed that the majority of the patients in the study belong to the middle and lower socioeconomic classes based on a validated scoring tool in a resource-challenged setting. This finding is consistent with the previous association of CP with poor education and poverty.^{[19],[20],[21]} Furthermore, our finding is similar to previous reports from developing countries.^[22],[23]

The commonest etiological factors are hypoxic encephalopathy and bilirubin toxicity (kernicterus), this is in keeping with findings in other reports.^[24],[25] Perinatal events are the commonest causes of CP in resource-poor settings like Nigeria.^{[26],[27],[28]} Possession by evil spirits or witchcraft ranked third among the perceived causes of CP mentioned by respondents in our study. In most traditional African cultures, including Nigeria, there is a strong belief that people's lives are controlled by ancestral spirits and that disability is of spiritual origin.^[29],[30] It is also a common perception in most African society that causes of neurologic diseases or disabilities are believed to be an affliction of the mind by witchcraft or evil spirits, or even ancestors' sorrow or anger.^[31],[32] These perceived causes place the blame of the disability on a curse, punishment or a gift, largely absolving the child and the parents from taking the blame for the child's disability. Some of the caregivers in our study believed that God destined their children to have CP because of their strong religious belief that whatever happens in life is already destined by God. This could simply be explained by the predominant monotheistic nature of the communities in which the study was conducted. Unfortunately, the wrong perception of the causes of CP will likely cause a delay in seeking appropriate medical care and this will eventually lead to the development of complications that will increase the total cost of managing a child with CP.

Almost all the children (98%) had associated disabilities in our study with most of them having one or more disabilities. The commonest disability we observed was a seizure disorder (65%). This is similar to previous reports from southern parts of Nigeria ^[24],[33] which contrasts with reports from India ^[34],[35] where intellectual disability was the commonest associated disability accounting for 42–72.5%. Children with co-occurring disabilities challenges require specialized care, beyond therapy, and rehabilitation for the physical impairment caused by CP. There is a further expense because of targeted treatment for the disability, as a result, CP costs quickly climb higher when associated disability is present.

Limitation of the Study

A drawback of our study design is that it was conducted in a tertiary hospital setting, which may tend to overestimate costs because of its tendency to select for mainly high-cost cases. Indirect cost due to productivity losses considered work absenteeism by caregivers only lost school days by the children were not included. Intangible costs from emotional distress (anxiety, fear, stigma) associated with CP, use of multiple medications, and costs incurred from logistic delays (waiting time), especially while undergoing preliminary investigations and waiting to see the physician in the clinic were also not included because of the lack of standard methods of costing. We also did not collect costs due to adverse reactions to some drugs such as antiepileptic medications, probably because most of them started their drugs within a few months of the interview. Furthermore, the study did not capture detailed measures of income (principal cost analysis of the patient's source of financial support) adjusted for inflation, which tends to overstate the effects on economic growth despite the significant devaluation of the Naira to the Dollar as at the time of the study. Additionally, the cost of psycho-educational rehabilitation of some of the patients with comorbid intellectual/cognitive impairment was not assessed.

Conclusion

In conclusion, our study provided a preliminary estimate of the high cost of care borne by the family in the treatment of CP. The indirect cost is the principal cost driver of the total cost incurred by the family, and the cost of medications also contributed significantly to the total direct cost of care. On the background of out-of-pocket payments, catastrophic health expenses for the family can contribute immensely to the treatment gap in the management of CP. Despite the limitation of our study being done in a tertiary health facility, it provides a baseline data on the significant financial burden that CP posed to the family using already validated socioeconomic tools suitable for resource-challenged settings. This will serve as a template for further economic evaluations of the burden of CP in Nigeria and other parts of Africa.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.

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