Cost of Illness of Major Neurocognitive Disorders in India
Correspondence Address: Source of Support: None, Conflict of Interest: None DOI: 10.4103/0028-3886.329606
Source of Support: None, Conflict of Interest: None
Keywords: Cost of care, direct and indirect costs, major neurocognitive disorder
Major neurocognitive disorder (Major NCD) is characterized by significant cognitive decline from a previous level of performance in one or more of the six cognitive domains listed in DSM-5. Additionally, deficits in cognition must be sufficient to interfere with a person's independence in activities of daily living. Major NCD affects the elderly with significant morbidity and substantial socioeconomic impact.
According to the World Alzheimer report 2015, estimated crude prevalence rate in total population over 60 years was 5.2%, with over 46.78 million people living with major NCD worldwide. This number is expected to double by 2030. As per Indian Population Census 2011, nearly 104 million people (8.3% of the total population) are beyond 60 years of age. The estimated number of people living with major NCD in India in 2010 and 2015 was 3.7 million and 4.1 million, respectively. Previously published studies from India estimated a prevalence of major NCD ranging from 1.36% to 8.7%.
Major NCD is a chronic disease characterized by relentless progression and mostly of an irreversible nature. Chronicity and lack of cure make major NCD care costly and time-consuming. Three main components of the cost of major NCD care are direct (medical and nonmedical), indirect, and intangible costs. The global costs of major NCD have increased from US$604 billion in 2010 to US$818 billion in 2015. Estimated annual costs per person with major NCD in the southeast Asian region increased by 26.3% from $1601 in the year 2010 to $2021 in the year 2015 (World Alzheimer report 2015).
Healthcare expenses toward major NCD care in India are predominantly borne by families and caregivers. They face the socioeconomic burden of major NCD. Individual and family face economic burden in various forms: loss of income (both individual and care-giver) and increasing out-of-pocket spending (OOPS) due to increasing health care costs. The increasing prevalence of major NCD will result in a greater economic burden on families and society. The economic impact of major NCD has barely been evaluated in India. This study aimed to estimate the individual cost of care according to major NCD severity and component costs of major NCD care.
This was a cross-sectional study; 50 major NCD patients with primary caregivers were enrolled consecutively from cognitive disorder and memory clinic in Neurosciences Center, All India Institute of Medical Sciences, New Delhi. Patients diagnosed with Alzheimer's disease, vascular or mixed major NCD as per DSM IV criteria, aged >55 years, disease duration of a year or more with availability of key caregiver were included. Patients with other major NCD types, gross sensory impairment interfering with the assessment, prior mental retardation, and without caregiver were excluded. A primary caregiver was defined as a family member residing with the patient for the past ten years at least, providing most of the daily care. The institutional review board approved the study. Written informed consent was signed by caregivers and, when possible, by patients.
Patients and caregivers were administered a questionnaire after inclusion into the study. Demographic information consisting of age, gender, marital status, education, and occupational status were collected. Clinical details about the onset, duration of major NCD, comorbidities, and family history were also noted. Revised norms of the KuppuSwamy scale 2012 were applied to assess the socioeconomic status of the patients.
Cognitive function was assessed by Hindi mental state examination, and severity of major NCD was determined by Clinical dementia rating (CDR) scale. Behavioral disturbances were measured using a brief version of the neuropsychiatry inventory (NPI).
Caregivers were interviewed about their relationship to the patient, marital and occupational status, and number of hours of care provided per day. Information about various aspects of direct and indirect costs of care was also retrieved from caregivers. Total cost was arrived at by adding direct and indirect costs. Cost assessment was done for previous six months from the time of inclusion and was averaged to give a monthly cost. Cost pertaining to comorbidities was also recorded.
Direct medical costs included information on consultations, investigations, admission, treatment, and medication costs.
Direct nonmedical costs included travel, accommodation, professional caregiver or hired help, assisted devices, and house modification costs.
Indirect costs were assessed by the human capital method. It included loss of earnings by patients and loss of productivity of caregivers.
Data analysis was done using STATA version 13 for Windows. Quantitative variables with normal distribution were expressed as mean and SD. Mann–Whitney U test was used for comparison of the significant difference between the two groups.
Fifty major NCD patients with their caregivers were interviewed for the study. Their baseline demographic characteristics are shown in [Table 1]. The mean age of the sample was 68.56 ± 9.52 years, with ages ranging between 55 and 87 years. There was uneven gender distribution, with 60% sample being males. The majority (66%) of subjects were married. Most of the subjects, that is, approximately 64%, were from urban areas. In terms of educational status, 34% were graduates and 28% were illiterate. With respect to occupational status, 38% of patients were homemakers and 36% were retired employees. Analyzing socioeconomic status, the majority (44%) belonged to the upper-middle group followed by 36% from the lower-middle group.
The study population predominantly had Alzheimer's disease (80%), 14% had vascular major NCD, and the rest 6% had mixed major NCD. Twenty (40%) subjects had one or more comorbidities. All 20 patients had hypertension; in addition to that, seven had CAD, one had DM II, and one was diagnosed with colon tumor. Three (6%) subjects had a family history of major NCD.
Cost assessment and comparison
After applying the CDR scale, subjects were divided as having mild, moderate, and severe major NCD. For the purpose of comparison and to reduce the skewness of data due to the small sample size, patients with mild and moderate major NCD were clubbed together to form a group. The other was the severe major NCD group.
The average monthly cost of care of a person with major NCD ranged from INR 6524 to INR 13984 for mild to moderate major NCD group and severe major NCD group, respectively. On analysis (Mann–Whitney U test), the overall cost of care for severe major NCD patients was found to be significantly higher than that for mild to moderate major NCD patients (P = 0.001).
The overall cost of care and its components are as depicted in [Picture 1].
In severe major NCD, DC (INR 12020) was significantly higher than IC (INR 1964) (P = 0.0000). DNM cost (INR 7874) was statistically higher than DM cost (INR 4146) (P = 0.00).
Mild to moderate major NCD group did not show any statistical difference between DC (INR 2113) and IC (INR 4411). DM cost (INR 1400) was significantly higher than DNM cost (INR 713) (P = 0.000).
The mean total cost of care of major NCD patients with comorbidities (INR 9250) was lesser than that of major NCD patients without comorbidities (INR 11420); however, it was not statistically significant (P = 0.797).
This is a cross-sectional observational study carried out in the patient population attending the memory clinic of a tertiary care center. The chief aim was to determine the household cost of managing a person with major NCD, which would provide a clear picture of the economic burden borne by the patient and/or the family.
The cost of illness per patient in the mild to moderate major NCD group and severe major NCD group was INR 6524 per month and INR 13,984 per month, respectively. The monthly expense was significantly higher for those with severe major NCD, suggesting an increase in the cost of care with worsening major NCD. This finding corroborates with earlier studies by Wolstenholme et al., Leon et al., Murman et al., and Zhu et al.
Assuming mean monthly cost to be constant for the next 12 months, estimated annual costs came up to INR 78288 and INR 167808 for mild-moderate and severe major NCD groups, respectively. Wimo et al. (2005) estimated the annual cost of major NCD care in India to be USD 2229 (INR 100327) to USD 5061 (INR 227795) according to the increasing need for informal care. Rao and Bharath estimated the annual cost of care of major NCD in India by a household budget approach. Based on the severity, it ranged from INR 45600 to INR 202450 in urban areas and INR 20300 to INR 66025 in rural areas. They also noted increasing costs with increasing severity of major NCD.
Thomas et al. (2001) and Kapur et al. (2004) conducted research on cost for epilepsy and diabetes, respectively. The estimated annual cost was INR 13,756 for epilepsy and INR 19,914 for diabetes. These estimates were markedly low compared to the annual cost of major NCD care found in our study.,
The various component costs and their proportions from our study are mentioned in [Table 2]. In the mild to moderate group, indirect costs formed the biggest fraction of the overall cost. This suggests huge losses incurred by affected individuals and their families due to lack of earning and provision of home care. Another Indian study also noted that nearly two-thirds (60%) of the total cost was attributed to informal care.
In a systematic review on the economic burden of major NCD by Cantarero-Prieto et al., indirect costs had the greatest impacts, amounting to 65% of total costs in Europe. Wimo et al. concluded that informal care (62.9%) had the greatest contribution to major NCD care costs in low-middle income countries (based on world bank country classification).
Direct medical costs were significantly higher than direct nonmedical costs in our mild to moderate major NCD group, suggesting expenditure associated with establishing the diagnosis in the earlier stage of major NCD (includes consultations, investigations, and frequent visits to the hospital).
In the group with severe major NCD, direct nonmedical costs (56.3%) had a major contribution to total costs of care. Direct social costs (43.1%) were the major factor in major NCD care costs as estimated by Wimo et al. for high-income countries. In our study, direct nonmedical costs were significantly higher than direct medical costs among patients with severe major NCD. It could be due to the increased need for healthcare assistants and institutionalization during this stage of illness.
Major NCD care in subjects without comorbidity was higher than those with comorbidity; however, there was no statistical difference. Our findings contradicted that of Leon et al., L. Jonsson et al., Murman et al., and Akerborg et al. Murman et al. and Akerborg et al. found that comorbidity resulted in significantly higher direct costs and total cost of major NCD care.
Our study is a cross-sectional study with an inherent inability to shed light on the lifetime cost of care of major NCD. The sample size is small and inpatients were not included. All subjects were taken from a memory clinic in a tertiary care center, which might not represent the national population. The risk of recall bias cannot be ruled out as all component costs were predominantly reported by a primary caregiver.
We aimed to evaluate the economic burden faced by the family while caring person with major NCD. An increase in the elderly population and increasing prevalence of major NCD prove to be an enormous economic burden on both government and caring families in our country. A prospective study with a large cohort on the cost of major NCD care would provide insight and enable health policymakers to plan affordable services to people with major NCD.
Declaration of patient consent
The authors certify that they have obtained all appropriate patient consent forms. In the form, the patient(s) has/have given his/her/their consent for his/her/their images and other clinical information to be reported in the journal. The patients understand that their names and initials will not be published and due efforts will be made to conceal their identity, but anonymity cannot be guaranteed.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
[Table 1], [Table 2]