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Table of Contents    
BRIEF REPORT
Year : 2021  |  Volume : 69  |  Issue : 3  |  Page : 703-706

Cognitive Capacity Assessment: The Fundamental Element of Neurological Disability Guidelines in India


Departments of Neurology, and Biostatistics, Division of Neuropsychology, All India Institute of Medical Sciences, New Delhi, India

Date of Submission30-Mar-2020
Date of Decision09-Apr-2020
Date of Acceptance03-Oct-2020
Date of Web Publication24-Jun-2021

Correspondence Address:
Dr. Ashima Nehra
Room No. 718, 7th Floor, Neurosciences Centre, All India Institute of Medical Sciences, New Delhi 110029
India
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/0028-3886.319214

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 » Abstract 


Background: Disability evaluation as per World Health Organization includes assessment of impairments, activity limitations, and participation restriction, which unfortunately is not assessed by the existing guidelines of disability in India.
Aim: The aim of this study wasto comparea new study criterion with the existing guidelines for assessing cognitive disability for chronic neurological conditions.
Methodology: A cross-sectional pilot study was conducted on 41 participants. They were assessed on an existing guideline (Gazette India 200,1 assessing physical domain and Intelligence Quotient[IQ]) and study criterion assessing three aspects of cognitive capacity: IQ, neurocognitive functioning, and QOL.
Results: The existing guideline underestimated 84% of cases for disability. The average percentage of disability measured by the study criterion was 33.2% more as compared to existing guidelines with S.D of 26.6.
Conclusion: Cognitive capacity assessment is an important element to be measured in chronic neurological disability certification. However, a large sample is required to make an affirmative claim for the same.


Keywords: Chronic neurological disorders, cognitive capacity assessment, disability
Key Message: Cognitive capacity assessment is a comprehensive disability assessment that do justice to the participants with neurological conditions, as they suffer more from quality of life impairment than just mere mental disability.


How to cite this article:
Bajpai S, Nehra A, Pandey R M, Sati H, Singh RK, Vishnu VY, Rajan R, Singh M, Srivastava A, Srivastava P, Tripathi M. Cognitive Capacity Assessment: The Fundamental Element of Neurological Disability Guidelines in India. Neurol India 2021;69:703-6

How to cite this URL:
Bajpai S, Nehra A, Pandey R M, Sati H, Singh RK, Vishnu VY, Rajan R, Singh M, Srivastava A, Srivastava P, Tripathi M. Cognitive Capacity Assessment: The Fundamental Element of Neurological Disability Guidelines in India. Neurol India [serial online] 2021 [cited 2021 Jul 25];69:703-6. Available from: https://www.neurologyindia.com/text.asp?2021/69/3/703/319214




The definition of the term”disability” has changed lately.Recently, World Health Organization (WHO) has moved towards a new international classification system for healthcare, the International Classification of Functioning (ICF), Disability, and Health.[1] It focuses on functionality over diagnoses. The new definition thrusts focus on every person and not just on their diagnosis with traditionally acknowledged disabilities. Further, the ICF does not characterize health conditions overtly or covertly, as “mental” or “physical.”

It is important to state that there are many conditions or disorders that come under the purview of “disability,” but unfortunately they are still not categorized on the same line. For example, Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act of India,[2] 1995, defines “Person with disability”as a person with <40% of any disability out of blindness, low vision, leprosycured, hearing impairment, locomotor disability, mental retardation, and mental illness as certified by a recognized medical authority. Unfortunately, “neurological disorders” is nowhere. In addition, most of the neurological disorders, irrespective of different pathologies, result in long-term disability either in physical or cognitive in nature, which eventually hampers the overall quality of life (QOL).

Although, recently, the term “chronic neurological disability” had been added under the bill of the Act,[3] Nonetheless, there are many issues related to chronic neurological conditions that need to be addressed. They may have an early age of onset, relapse, episodic nature, chronicity, slow prognosis, and fluctuating course.[4] For an example, multiple sclerosis, Parkinson's disease, and myasthenia gravis are certain conditions that are fluctuating, relapsing, and episodic in nature; and the associated disability of such few neurological conditions can only be assessed on QOL scale and everyday functioning scales. Measuring only permanent impairment does not help in such cases. There is an overwhelming wealth of disability research[5] in various other medical conditions. However, to the best of my knowledge, there is no research study that focuses exclusively on chronic neurological conditions. This makes the current study unique in itself. The gazette of India currently approves Indian Disability Evaluation and Assessment Scale[6] (IDEAS) for the evaluation of disability. However, it yields fallacies in neurological conditions because it is validated on conditions like psychosis and dementia, which has probable mental disability with no associated physical disability.[5] If IDEAS is being used for calculation of disability in chronic neurological conditions, it will be very difficult to attribute whether disability is due to physical component or a mental component. There are high chances that the same disability will be scored twice because with the existing formula a + b (90-a)/90, where “a” is higher disability score, it will eventually overestimate the real disability. Thus, in such situations, scales like modified Rankin scale[7] score for assessing motor system disability among stroke victims is useful. However, we still lack any comprehensive tool for assessing the comprehensive cognitive capacity and QOL in such conditions, which forms the true base for disability.

Hence, this paper focuses on the assessment of the overall cognitive capacity of the person, thereby justifying the essence of the term “disability” and also safeguarding the persons “rights.”


 » Methodology Top


A cross-sectional pilot study was conducted on 41 participants with chronic neurological conditions. All participants were screened on eligibility criteria [Figure 1] at Neurosciences Center, All India Institute of Medical Sciences, New Delhi, India. Out of total, only 25 were recruited. Seventeen cases were of traumatic brain injury, two were suffering from dystonia, four had neuromuscular disease, and one case each was of Stroke and Huntington's disease. All were assessed on two criteria. First is the existing guideline of disability mentioned in the Gazette of India[8] 2001, which includes assessment of physical domain (upper extremity/lower extremity), and the psychological domain (Intelligence Quotient), which is the only recommended assessment from the psychological disability perspective so far. Second is the study criterion that was based on a model proposed by Dr.S.K. Verma,[9],[10] which included a combination of IQ, cognition, andQOL. All of these domains were assessed using Indian standardized neuropsychological tests, namely, Hindi Mental Status Examination[11] (mental status screening), Post Graduate Institute Memory Scale,[12](cognition), Bhatia Short Scale test for Intelligence[13]+ Verbal Adult Intelligence Scale[14] (IQ), and Dysfunctional Analysis Questionnaire[14] (QOL).Institute ethical clearance was taken for the study (IEC-496/01.09.2017). Informed consent was taken from all the participants before the commencement of the study.
Figure 1: Flow diagram of the study design.

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 » Results Top


While comparing the existing disability criteria and the study criteria, there was a vast difference in the frequency of people eligible for chronic neurological disability. As evident in [Table 1], only six participants were eligible for chronic neurological disability. However, as per the study criterion, 22 participants were found to be having impaired cognitive capacity, which makes them the possible cases for chronic neurological disability certification. Moreover, the average percentage of cognitive disability [Table 2] measured by the study criterion was 33.2% more as compared to existing guidelines, with S.D of 26.6.
Table 1: Distribution of the cases according to the percentage of disability by both the criteria

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Table 2: Descriptive statistics

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 » Discussion Top


The Global Burden of Disease[15] study showed that over the years the global health impact of neurological disorders had been underestimated due to the lack of healthcare programmes and resources for their management.[16]

Regrettably, the healthcare burden in developing countries remains largely incognito state. Specifically in India, such disease burden is particularly calamitous in our poor populations. There are many factors that play a role in such grim situation, such as unemployment, loss of family income, constant caregiving, loss of wages, medication and hospitalization costs, stigmatization, etc., Besides this, such persons are often victims of human rights violations as well; even if neurological conditions have been added under the bill of 2014, many patients suffering from neurological disorders are not identified due to the lack of the cognitive capacity assessment procedure, where only a person's IQ is a mere criterion for having/not having a psychological disability. For example, even if a person IQ is normal, a person is not able to hold on to his/her job due to his memory problems. Therefore, such patients who lose their livelihood (unlike prior to the present neurological/clinical/disabled condition), and capacity to take responsibility for their family members, are never evaluated for such deficits. Such observation is consistent with the existing literature as well.[17]

Cognitive retraining works on brain plasticity principle wherein the cognitive reserve is stimulated to an extent so that it helps the person return to the highest level of function and independence possible physically, emotionally, cognitively, and socially while improving your overall QOL–which eventually affect the extent of disability residue. Therefore, to stimulate cognitive retraining, an overall cognitive capacity quantification is required. As stated earlier, disability is a contextual variable which is dynamic with time. Hence, a balance between a person autonomy and wellbeing should be assessed proportionally and maintaining the continuum of care of the individual.[18],[19] This is what exactly the results show, where 84% of the cases were underestimated by existing guidelines for disability, while only 12% of the cases were overestimated by the same guidelines. This shows that the study criterion identified 22 cases out of 25 as having more disability than the existing guidelines on the cognitive capacity assessment [Table 1]. The average percentage of psychological disability [Table 2] measured by the study criterion was 33.2% more as compared to existing guidelines, with an SD of 26.6. Thus, the study criterion justifies the true contemporary meaning of disability, which covers all three areas of assessment, i.e., a person's impairment, activity limitations, and participation restrictions as recognized by the WHO.


 » Conclusion Top


Cognitive capacity assessments were found to be promising. This study is a small initiative from an institute of national importance that holds the status to pave road ahead for future disability studies in neurosciences to bring a uniform national guidelines for such conditions. It will be noteworthy for the growth and development of medical professions like neurology and allied rehabilitation professions in our country. There is a need to endorse such comprehensive assessment and help our policy makers to make necessary amendments for the benefit of such people's rights.

Declaration of patient consent

The authors certify that they have obtained all appropriate patient consent forms.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.



 
 » References Top

1.
International Classification of Functioning, Disability and Health, 2001, Classification, Assessment, Surveys and Terminology Team World Health Organization Geneva, Switzerland.  Back to cited text no. 1
    
2.
Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995.  Back to cited text no. 2
    
3.
The Rights of Persons with Disabilities Bill, 2014. Ministry of Social Justice and Empowerment, Department of Empowerment of Persons with disability, Government of India.  Back to cited text no. 3
    
4.
Puri I, Singh G, Acharya RK, Goswami D. Critical appraisal of guidelines for evaluation and certification of specified neurological disabilities. Ann Indian Acad Neurol 2019;22:373-6.  Back to cited text no. 4
[PUBMED]  [Full text]  
5.
Grover S, Shah R, Kulhara P, Malhotra R. Internal consistency and validity of Indian disability evaluation and assessment scale (IDEAS) in patients with schizophrenia. Indian J Med Res 2014;140:637-43.  Back to cited text no. 5
[PUBMED]  [Full text]  
6.
Thara R, Kumar KA, Nambi S, Murali T, Kalyansundaram, Narayanan KL, et al. IDEAS (Indian Disability Evaluation and Assessment Scale). A scale for measuring and quantifying disability in mental disorders. The Rehabilitation Committee of the Indian Psychiatry Society-2002, Kolkata.  Back to cited text no. 6
    
7.
Quinn TJ, Dawson J, Walters M. Dr John Rankin; his life, legacy, and the 50th anniversary of the Rankin stroke scale. Scott Med J 2008;53:44-7.  Back to cited text no. 7
    
8.
Guidelines For Evaluation Of Various Disabilities And Procedure For Certification. Ministry of Social Justice and Empowerment, 2001, The Gazette Of India.  Back to cited text no. 8
    
9.
Pershad D, Verma SK. Proposed model for assessing psychosocial disability. Dept of psychiatry. PGI Chandigarh (unpublished manuscript), 1993.  Back to cited text no. 9
    
10.
Verma SK. Suggested model for the assessment of percentage disability of memory. Unpublished Manuscript. Dept of Psychiatry, 1998.  Back to cited text no. 10
    
11.
Ganguli M, Ratcliff G, Chandra V, Sharma S, Gilby J, Pandav R, et al. A hindi version of the MMSE: The development of a cognitive screening instrument for a largely illiterate rural elderly population in India. Int J Geriat Psychiatry 1995;10:367-77.  Back to cited text no. 11
    
12.
Pershad D, Wig N. The Construction and Standardization of Clinical Test of Memory in Simple Hindi. Agra: National Psychological Corporation; 1977.  Back to cited text no. 12
    
13.
Bhatia CM. Performance Tests of Intelligence Under Indian Conditions. Oxford University Press; 1955., Agra.  Back to cited text no. 13
    
14.
Pershad D, Verma SK. Handbook of PGI Battery of Brain Dysfunction (PGI-BBD). Agra: National Psychological Corporation; 1990.  Back to cited text no. 14
    
15.
Lopez AD, Murray CJL. The global burden of disease, 1990–2020. Nat Med 1998;4:1241-3.  Back to cited text no. 15
    
16.
Barendregt JJ, Van Oortmarssen GJ, Vos T, Murray CJL. A generic model for the assessment of disease epidemiology: The computational basis of DisMod II. Popul Health Metr 2003;1:4.  Back to cited text no. 16
    
17.
Basavarajappa C, Mehta UM, Sivakumar T, Kumar NC, Thirthalli J. Disability certification in India: Indian disability evaluation and assessment scale versus World Health Organization disability assessment schedule. Indian J Psychol Med 2017;39:715-6.  Back to cited text no. 17
[PUBMED]  [Full text]  
18.
Nehra A. Role of neuropsychology in the continuum of health care in neurological conditions. Neurol India 2019;67:404-9.  Back to cited text no. 18
[PUBMED]  [Full text]  
19.
Nehra A, Tripathi M, Srivastava MV. Neuropsychological disability: A hidden epidemic of neurological conditions. Neurol India 2020;68:154-61.  Back to cited text no. 19
[PUBMED]  [Full text]  


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