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Economic burden of slow learners: A prevalence-based cost of illness study of its direct, indirect, and intangible costs S Karande1, D Ramadoss1, N Gogtay21 Department of Pediatrics, Seth G.S. Medical College and K.E.M. Hospital, Parel, Mumbai, Maharashtra, India 2 Department of Clinical Pharmacology, Seth G.S. Medical College and K.E.M. Hospital, Parel, Mumbai, Maharashtra, India
Correspondence Address: Source of Support: None, Conflict of Interest: None DOI: 10.4103/jpgm.JPGM_105_19
Keywords: Attention-deficit hyperactivity disorder, borderline intellectual functioning, cost of illness, students
Children with borderline intellectual functioning (“slow learners”) have an intelligence quotient (IQ) in the range of 71 - 84, that is, between −2 and −1 standard deviations from the population IQ mean, as per the Diagnostic and Statistical Manual of Mental Disorders-IV-revised and International Classification of Diseases, Tenth Revision, Clinical Modification.[1],[2] Typically, slow learners have heterogeneous cognitive difficulties and tend to lag behind in the regular classroom as the speed and methods of teaching are inappropriate for their learning ability.[3],[4] They have difficulties in reading, writing, and doing mathematics, underperform in all school subjects, and tend to have executive function deficits and poor working memory.[3],[4],[5] They are at an increased risk of becoming school dropouts, experiencing social isolation, and developing lowered self-esteem.[4],[6] This condition has been reported to be closely associated with developing anxiety, depression, suicidal ideation, mood, and conduct disorders in adolescence or adulthood.[4],[5],[6],[7] From the societal perspective, it is important to evaluate the economic impacts [“cost of illness” (COI)] associated with slow learners and identify interventions that can reduce the burden of this underreported condition. We conducted this study with the primary objective of evaluating the economic burden of slow learners imposed on families of afflicted students, on the healthcare provider, and on society. A secondary objective was to assess the impact of variables on the economic burden imposed on families of afflicted students.
Ethics This study was approved by the institutional ethics committee. The study protocol was retrospectively registered with the clinical trials registry of India (CTRI/2017/09/009861). The accompanying parent signed an informed consent form to participate in the study. In addition, all students age 7 - 18 years signed an assent form prior to enrolment. Confidentiality was maintained using unique identifiers. Design, setting, and sample size The present cross-sectional, single-arm questionnaire-based descriptive COI study was conducted at the learning disability clinic of a public medical college in Mumbai, a megacity in western India over a period of 18 months, from March 2016 to August 2017. The prevalence of slow learners in India is unknown, but has been reported to be up to 7% - 13% among populations in Israel, the United States, and United Kingdom.[6],[8],[9] In this study; we assumed that 7% of students would be slow learners. With a 95% confidence level and 5% precision, Daniel's formula [10] yielded a sample size of 100. Inclusion criteria and enrolment process The study population (recruited by nonprobability sampling) comprised students who were ≥5 - 18 years of age and who were diagnosed with borderline intellectual functioning and were studying in English medium schools. A total of 100 students were recruited. No exclusion criteria that would preclude participation were used among students who met the inclusion criteria. Diagnosis of slow learners Each student had undergone standard recommended psychological evaluation before the diagnosis of slow learner was confirmed. An otolaryngologist and an ophthalmologist documented hearing or visual impairment (deficits of >40%), if any, respectively. The counsellor ruled out whether any environmental deprivation due to poor home or school environment, or any emotional problem was primarily responsible for a child's poor school performance (PSP). The pediatrician took a detailed clinical history and did a detailed clinical examination. The clinical psychologist used the Wechsler Intelligence Scale for Children-Revised (M.C. Bhatt's Indian adaptation)[11] or Binet-Kamat Test of Intelligence [12] to determine whether a student's global IQ score was between 71 and 84. In our clinic and hospital, all consultations and tests were conducted free of cost. However, some parents who wished to do their child's audiometry and visual testing and occupational therapy assessment from a private clinic were allowed to do so. Using information from the child's parents and teachers, diagnosis of co-occurring attention-deficit/hyperactivity disorder (ADHD), if present, was made by ascertaining that student's specific behaviors met the required Diagnostic and Statistical Manual of Mental Disorders-IV-revised criteria.[1] Up to 40% of slow learners have associated ADHD which is characterized by persistent hyperactivity, impulsivity, and inattention, and this comorbidity further impairs their learning.[13] Data collection In the present COI study, data collection of costs was carried out from the “societal” perspective, namely, both from the “afflicted families” (viz. the parent/guardian) and from the “healthcare provider's” perspectives.[14],[15] To collect data, our study followed the “prevalence-based retrospective” approach which measures the COI in the present and the past in a given year.[14],[15] Data collection of costs from the “afflicted families'” perspective To estimate the costs from the “afflicted families'” perspective, the “bottom–up” approach (person-based) was followed which assigns costs to individuals with the health condition of interest.[14],[15] A structured questionnaire was used to interview the parent to collect data related to three types of treatment costs of the afflicted students, namely, (1) “direct costs (medical and non-medical),”[14],[15] (2) “indirect costs,”[14],[15] and (3) “intangible losses.”[14],[15] For documenting the “direct costs (medical and non-medical)” and “indirect costs” of individual students, the parents were asked to state the costs incurred since the time their PSP had been noticed. (1) “Direct costs”: (a) “Direct medical costs”: The direct medical costs (defined as the medical care expenditures incurred for diagnosis, treatment, and rehabilitation)[14],[15] of the students included all out-of-pocket payments for the following: (i) outpatient registration paper of our clinic; (ii) audiometry (including otolaryngologist's consultation charges, traveling expenses for doing audiometry); (iii) vision testing (including ophthalmologist's consultation charges, traveling expenses for doing vision testing, cost of spectacles/contact lenses if prescribed); (iv) private tuitions, if availed (including tuition teacher's and traveling expenses); a form of additional individualized teaching, whose speed is in tune with the student's learning abilities; (v) remedial education, if availed (including remedial teacher's charges and traveling expenses); one-to-one hourly remedial sessions with a remedial teacher twice or thrice weekly for at least three years to reduce academic difficulties;[16],[17] (vi) psychiatric evaluation, if done (including psychiatrist's consultation charges, traveling expenses); (vii) occupational therapy, if availed (including occupational therapist's consultation charges, traveling expenses); (viii) speech therapy, if availed (including speech therapist's consultation charges, traveling expenses), (ix) counselling, if availed (including counsellor's consultation charges, traveling expenses); (x) medications (for PSP and co-occurring medical condition, if any, such as epilepsy), including complementary therapies such as Ayurveda, homeopathy, if availed; and (x) other investigations (electroencephalogram, magnetic resonance imaging/computed tomography brain, blood tests, e.g., vitamin B12/folic acid/thyroid hormone levels), if done. (b) “Direct non-medical costs”: The direct nonmedical costs [14],[15] of the students included all out-of-pocket payments for transportation costs for traveling to the learning disability clinic and to school. (2) “Indirect costs” Indirect costs included (i) “loss of earnings”(average annual loss of wages due to absenteeism) and (ii) “productivity losses” (average annual loss of income due to loss of job) for parent, as valued by the human capital method.[14],[15] (3) “Intangible costs” Intangible costs' data were collected by documenting the willingness-to-pay value using the contingent valuation technique, a recommended method in COI studies that adopt a societal perspective.[14],[15] The parent would be provided with an initial bid (namely, their per capita income to minimize the starting bid bias) and asked whether they would like to pay this amount of money as a one-time payment for a remedy that would cure their child's PSP. If the parent answered positively (negatively), then the amount was increased (decreased) (i.e., doubled or halved) until the parent declined (accepted) to (hypothetically) pay the specified amount. Data related to eight variables (i) age and (ii) gender of student; (iii) residential address (whether staying in Mumbai or outside Mumbai); (iv) socioeconomic status, as determined by the Kuppuswamy's socioeconomic scale;[18],[19] (v) number of sibling(s); (vi) absence or presence of comorbid ADHD; (vii) absence or presence of co-occurring medical illness; and (viii) duration of PSP were noted using a supplementary questionnaire. The educational board that the student's school was affiliated to was also noted, but not utilized as a variable, as many students had changed their school board curriculum over the years. Data collection of costs from the “healthcare provider's” perspective The direct medical costs from the “healthcare provider's” perspective,[14],[15] that is, the “learning disability clinic costs” was computed by calculating the expenditure to run it, namely, “overt expenditure”: (i) salaries paid to the secretary, medical officer, counsellor, clinical psychologist, and special educator; (ii) clinic's landline telephone bill expenses; and (iii) stationary and photocopying expenses for maintaining patient records and for psychological tests material; and the on-going “covert expenditure”(namely, electricity, water and building maintenance expenses) during the period of study. All the costs were documented in Indian Rupees (INR) (1 US$ = ~68 INR in 2017). Data analysis Estimation of economic burden of slow learners from the “afflicted families'” perspective First, the “direct costs” and “indirect costs” for every student were estimated as a simple sum of all their components under the individual costs. Second, every student's “total costs” were estimated by adding his or her “direct costs” and “indirect costs.” Third, the “direct costs,” “indirect costs,” and “total costs” of all 100 students were estimated. Fourth, the “average annual total costs” of every student were computed by dividing his or her “total costs” by the number of years the PSP had been noticed. Fifth, the “average annual total costs” of all 100 students were added to estimate the “average annual total costs of slow learners” for afflicted families. Sixth, the “intangible costs” of slow learners were estimated from the data collected. Estimation of economic burden of slow learners from the “healthcare provider's” perspective By extrapolating the “learning disability clinic costs” calculated over the study period of 18 months to 12 months, the “average annual learning disability clinic costs” was estimated. Estimation of economic burden of slow learners from the “societal” perspective The “average annual total costs” for afflicted families was added to the “average annual learning disability clinic costs” to estimate the “average annual total costs of slow learners” for society. The “average annual total costs of slow learners” per student was calculated by dividing the “average annual total costs of slow learners” for society by the number of participants (n = 100). Cost data are usually skewed, as was the case in this study. Thus, we have presented the median and the ranges of all the cost components, including for the intangible costs. Since the outcomes (dependent) variables (direct costs, indirect costs, total costs, and intangible costs) are expressed as numerical data, the impact of the eight variables (predictors) on economic burden was analyzed using regression. The dependent variables were first assessed for normality. Based on whether they were normal or not normally distributed, we decided to apply either linear or quantile regression as appropriate. We also assessed whether the predictor variables (that were quantitative) had a linear relationship with the dependent variable and chose only those that had a linear relationship for the regression analysis. The data were analyzed using the Statistical Package for Social Sciences, Version 17.0 for Windows (Chicago, IL, USA). The statistical significant level was a P value <0.05 (two-tailed) for all analyses.
Characteristics of students enrolled in the study Of the 100 students enrolled, 84 (84.0%) students were “newly diagnosed” slow learners and the remaining 16 (16.0%) were “known” cases who had been diagnosed earlier with us and were following up for recertification of their disability for X or XII standard board examinations. No parent or student declined consent/assent for participation in the study. Of the informants, 44 (44.0%) were the students' mothers, and 56 (56.0%) were the fathers. The mean age of all the 100 slow learners was 14.8 years [standard deviation (SD) 2.5, range 6.6 - 18.2]; and the mean age of the 84 newly diagnosed slow learners was 14.5 years (SD 2.5, range 6.6 - 18.2). The overall boys to girls' ratio was 2.7:1. The majority (68.0%) of the children were currently studying in regular schools affiliated to the state government of Maharashtra educational board, namely, Secondary School Certificate (SSC) board or Higher Secondary Certificate (HSC) board; five (5.0%) were studying in regular schools affiliated to the Indian Certificate of Secondary Education (ICSE) board and 3 (3.0%) in regular schools affiliated to the Central Board of Secondary Education board. The remaining 24 (24.0%) were studying in special schools affiliated to the National Institute of Open Schooling (NIOS) board. Other details of clinical and sociodemographic characteristics (variables) are shown in [Table 1].
Economic burden of slow learners from the “afflicted families'” perspective Direct costs “Direct costs” estimated of all 100 students were INR 6,065,915 [Six million, sixty-five thousand, nine hundred fifteen] (median 28,170; range 1,220 - 529,840). The components of the “direct costs” are shown in [Table 2]a. Expenditure availed on tuitions, medications, and remedial education comprised 57.38%, 16.18%, and 10.30% of the “direct costs,” respectively. Among the 100 slow learners enrolled, (i) 10 (10.0%) had received tuitions and remedial education, 61 (61.0%) had received only tuitions, 6 (6.0%) had received only remedial education, and 23 (23.0%) students had received neither tuitions nor remedial education; (ii) 84 (84.0%) had not undergone any remedial education, 14 (14.0%) had discontinued remedial education prematurely (mean 7.2 months, SD 6.4, range 1 - 24) after spending INR 388,400 [Three hundred eighty-eight thousand, four hundred]; (median 16,800; range 4,000 - 96,000) on it, and only two (2.0%) had completed 36 months of remedial education and then discontinued it after spending INR 236,400 [Two hundred thirty-six thousand, four hundred]; (median 118,200; range 86,400 - 150,000) on it; and (iii) 25 (25.0%) had one or more co-occurring medical condition(s), 23 (23.0%) had refractory error, 18 (18.0%) had epilepsy, 3 (3.0%) had hemiparesis, 3 (3.0%) had congenital heart disease, and 2 (2.0%) had been diagnosed as having hypothyroidism and put on life-long thyroxin supplementation therapy.
Indirect costs “Indirect costs” estimated of all 100 students were INR 10,298,613 [Ten million, two hundred ninety-eight thousand, six hundred thirteen]; (median 53,333; range 2,000 - 3,300,000). The components of the “indirect costs” are shown in [Table 2]a. “Productivity losses” comprised 33.44% of the “indirect costs.” Five previously working mothers had left their job to look after their child's studies after their PSP had begun. Total costs “Total costs” estimated of all 100 students were INR 16,364,528 [Sixteen million, three hundred sixty-four thousand, five hundred twenty-eight]; (median 46,906; range 1,220 - 3,419,420). “Indirect costs” comprised 62.9% of the “total costs.” Average annual total costs The duration of PSP noticed by parent in their children is shown in [Table 2]b. The mean duration of PSP in the 100 students was 3.7 years (SD 2.4; range 1.0 - 11.0). Maximum students (23; 23.0%) had an “average annual total costs” in the range of INR 5,001 - 10,000 [Table 2]c. The “average annual total costs” estimated were INR 3,544,880 [Three million, five hundred forty-four thousand, eight hundred eighty]; (median 14,250; range 740 - 310,856). Intangible costs A majority of parents [89 (89.0%)] participated to estimate the “intangible costs” of slow learners. Of the remaining 11 (11.0%) parents who declined to participate, their reasons were as follows: 6 (6.0%) were not willing to pay any money for a remedy that would improve their child's condition, and 5 (5.0%) felt that their child's condition was not a burden. “Intangible costs” estimated of 89 students were INR 145,172,800 [One hundred forty-five million, one hundred seventy-two thousand, eight hundred]; (median 50,000; range 4,800 - 51,200,000) as shown in [Table 2]d. Economic burden of slow learners from the “healthcare provider's” perspective The “average annual learning disability clinic costs” were estimated to be INR 2,250,194 [Two million, two hundred fifty thousand, one hundred ninety-four] as shown in [Table 2]d, of which the “overt expenditure” to run the clinic was found to be INR 810,194 [Eight hundred ten thousand, one hundred ninety-four; 36.00%]; namely (i) expenditure on salaries INR 742,200 [Seven hundred forty-two thousand, two hundred, 32.98%], (ii) landline telephone bill expenses INR 7,394 [Seven thousand, three hundred ninety-four, 0.33%], and (iii) stationary and photocopying expenses INR 60,600 [Sixty thousand, six hundred, 2.69%]. The “covert expenditure” (namely, electricity, water and maintenance expenses calculated as INR 1,800 per square feet per year, as per hospital data) was INR 1,440,000 [One million, four hundred forty thousand; 64.00%]. Economic burden of slow learners from the “societal” perspective The “average annual total costs of slow learners” were estimated to be INR 5,795,074 [Five million, seven hundred ninety-five thousand, seventy-four]; and the “average annual total costs per slow learner” was estimated to be INR 57,951 [Fifty-seven thousand, nine hundred fifty-one] as shown in [Table 2]d. Impact of variables on economic burden of slow learners Impact on direct costs of slow learners As shown in [Table 3]a, only “duration of PSP” was the significant predictor of the direct costs (P = 0.001). In other words, for every yearly increase in the duration of PSP, the family expenditure was higher by INR 8,187 [Eight thousand, one hundred eighty-seven].
Impact on indirect costs of slow learners As shown in [Table 3]b, there was no significant predictor of “indirect costs.” Impact on total costs of slow learners As shown in [Table 3]c, “duration of PSP” was the only significant predictor of “total costs” (P = 0.005). For every yearly increase in the duration of PSP, the family's expenditure was higher by INR 19,093 [Nineteen thousand, ninety-three] (P = 0.005). Impact on intangible costs of slow learners As shown in [Table 3]d, there was no significant predictor of “intangible costs.”
A COI study is useful to inform the economic burden of a condition and aid the decision-making for health resource allocation.[14],[15] This study has documented that the economic burden of slow learners in the city of Mumbai is huge for the afflicted families, the healthcare provider, and for society at large. “Indirect costs” far outweighed “direct costs” of slow learners (62.9% vs 37.1%). Although only 89.0% of the parents participated in estimating the hypothetical “intangible costs” of slow learners; it was much higher than the “total costs” of slow learners. Furthermore, quantile regression analysis revealed that “longer duration of PSP” was an independent predictor of increased “direct costs” and “total costs.” We cannot compare this study with previous work because there is not any. A PubMed search using the medical subject headings (MeSH) words “economic burden” and “borderline intellectual functioning” did not reveal any study which has evaluated the economic burden of slow learners. What is the importance of this study?First, our study shows that in our city slow learners continue to be diagnosed late (mean age 14.5 years). Ideally, slow learners should be diagnosed when the afflicted student is in primary school so that there is adequate time for remedial education to reduce academic difficulties in reading, writing, and doing mathematics.[16],[17] Second, our study shows that parents of slow learners spend an enormous amount on private “tuition classes.” A majority (72.0%) of students, both before and after their diagnosis were attending “tuition classes” conducted by private regular teachers. Third, our study shows that very few (2%) slow learners complete 3 years of remedial education, while an overwhelming majority (98.0%) either does not undergo any remedial education or quits it prematurely. It is likely that the high costs of remedial education (approximately INR 36,000 - 108,000 annually) in our city could be one of the main reasons for this poor compliance. Currently, very few schools have resource rooms for remedial education within their premises and most parents have to avail remedial education from private special educators. Fourth, 41% of parents reported “loss of earnings” due to absenteeism from work and 5% mothers had quit their job due to their child's PSP resulting in significant loss of income for their families. Fifth, “intangible costs” far exceed the “total costs” due to slow learners. Many parents are willing to pay exceedingly high amounts (median, INR 50,000) for a hypothetical cure for their child's condition. “Intangible costs” reflect parental anguish in dealing with their child's condition and need to be documented for a comprehensive estimation of economic burden of a condition.[14],[15] What can be done to reduce the economic burden of slow learners? All “regular” classroom teachers should be sensitized to suspect and trained to screen for this condition early, when the child is in primary school. The majority of these students are not detected to be slow learners until they begin to attend school; they can even reach the end of primary school, when they are 12 years old, without being diagnosed because their apparent normality makes the problem difficult to detect.[3],[17] Hence, all primary school students with PSP should undergo IQ testing to aid its early diagnosis. School managements should become proactive to set up resource rooms and use special educators to formulate an individualized education program (IEP) for each slow learner and ensure that these children receive regular and affordable remedial education.[16],[17],[20] Indian studies have shown that IEP is effective in improving academic functioning and self-esteem of slow learners.[16],[20] Almost 25% of slow learners in this study were studying in special schools affiliated to the NIOS board. Setting up resource rooms would not only aid their continuing education in regular schools (“inclusive education”) but also reduce parental anguish and the “intangible” costs of this condition. To reduce the need for private tuitions, their IEPs should be integrated with the normal school curriculum.[16],[20] Recent research indicates that labeling and placement in special schools is detrimental to the long-term quality of life of slow learners and objective indicators of success in life (education, income, and professional prestige) in adulthood.[21] The strengths of this study include adequate sampling size, high participation, and high response rates. This study has its limitations. First, the nonprobability sampling of this study may have led to a recruitment bias in our findings. Second, the study results are subjected to recall bias of participating parents. Third, one-fourth of the study sample had one or more co-occurring medical condition, such as epilepsy, hemiparesis, and hypothyroidism, and there were difficulties in separating costs of these physical conditions from costs of borderline intellectual functioning. Fourth, because non-English-speaking students were excluded from the study, there may be a potential language bias in our findings. An overwhelming majority (95.1%)[13] of students referred to our clinic study in English-medium schools. Fifth, slow learners from the lower socioeconomic strata of society were not represented in our study population. Very few students, hardly 3.7%,[13] referred to our clinic belong to the lower socioeconomic strata of society. Most of these study in poor-quality schools and go undetected because either their school authorities do not refer or their parents do not bring them for assessment of their PSP. However, we do not believe that these limitations adversely affect the utility of our results. Both due to the limitations as outlined above and the general paucity of data on economic burden of slow learners, there is a need for such studies to be carried out in clinics situated all over the country/world.
Slow learners is a cost intensive condition (intangible > indirect > direct costs). Tuitions, medications, and remedial education are the most costly component of direct costs. To reduce its enormous economic burden, all primary school students with PSP should undergo IQ testing to aid its early diagnosis. Afflicted students should be offered affordable remedial education in resource rooms within their schools and their IEPs should be integrated with the normal school curriculum. Acknowledgement We thank all the students who participated in this study and their parents/guardians. Financial support and sponsorship The Learning Disability Clinic at Seth G.S. Medical College and K.E.M. Hospital is partially funded by a research grant from Tata Interactive Systems, Mumbai. Conflicts of interest Dr. Sunil Karande is the Editor of the Journal of Postgraduate Medicine.
[Table 1], [Table 2], [Table 3]
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