|Year : 2018 | Volume
| Issue : 4 | Page : 111-118
Outcome measures used in stroke rehabilitation in India: A scoping review
Karthik Mani1, Savitha Sundar2
1 Assistant Director, External and Regulatory Affairs, NBCOT Inc., Gaithersburg, MD, USA
2 Senior Occupational Therapist, Santa Clara County Office of Education and Prime Rehab, San Jose, California
|Date of Submission||26-Sep-2018|
|Date of Acceptance||05-Dec-2018|
|Date of Web Publication||06-Feb-2019|
Dr. Karthik Mani
No. 335, W Side Dr, Gaithersburg, MD 20878
Source of Support: None, Conflict of Interest: None
Background: Stroke is one of the prevalent noncommunicable diseases in India. In stroke rehabilitation, valid and reliable outcome measurements help in evaluating treatment effectiveness, systematic program evaluation, and justifying reimbursement. Measuring outcomes is construed as a good practice in the field of rehabilitation. Objectives: The purpose of this scoping review was to identify and review the outcome measures used in stroke rehabilitation in India to provide an up-to-date understanding of the nature of outcome measures used, their cultural relevance, linguistic relevance, and validity. Study Design: This is a descriptive scoping review. Methods: The scoping review framework proposed by Arksey and O'Malley in 2005 was used in this review. Following the development of review questions, relevant studies were identified, suitable studies were selected and critically reviewed, and the data were charted, collated, and summarized to generate themes. Results: Thirty-three studies identified 46 outcome measures. Most of the outcome measures used in stroke rehabilitation research in India were ordinal scales and body structure/function assessments. Reliability and validity scores of the identified scales ranged from 0.37–1.00 to 0.65–0.96, respectively. Modified Rankin Scale and Barthel Index were the most used outcome measures. Only two of the identified measures were developed in India. Conclusion: There is a dearth of culturally sensitive stroke-related outcome measures in India in all domains. The authors suggest that researchers in India exert caution when selecting and using outcome measures developed in foreign countries as the review identified only two translated and validated cognitive scales and one performance measure specific to the Indian population.
Keywords: Noncommunicable Diseases, Program Evaluation, Rehabilitation Research, Treatment Outcome
|How to cite this article:|
Mani K, Sundar S. Outcome measures used in stroke rehabilitation in India: A scoping review. Indian J Occup Ther 2018;50:111-8
| Introduction|| |
Stroke is one of the leading causes of morbidity and mortality in India. The crude prevalence of stroke in different parts of the country over the past two decades is estimated to be 44.29–559/100,000. Stroke outcomes vary widely and depend on myriad biological (severity/location of the lesion, age, etc.), sociodemographic (gender, socioeconomic status, etc.), and intervention (medical care, rehabilitation services, etc.) factors. In contemporary practice, health-care professionals utilize a variety of measures to determine stroke outcomes.
Outcome measurement helps health-care professionals to determine therapeutic effectiveness, modify intervention plans, plan transition of care, evaluate programs, and justify reimbursements. It also assists health policymakers to design policies with a preventive focus and health administrators to develop necessary health-care infrastructure. Hence, the use of appropriate, responsive, valid, and reliable outcome measures becomes critical. This scoping review identifies and analyzes outcome measures used in stroke rehabilitation in India.
| Methods|| |
The primary goal of this review was to gain a more thorough understanding of the state of outcome measures used in stroke rehabilitation in India by conducting a scoping review of the literature. For the purpose of this review, an outcome measure was defined as any tool that measures the outcome after an event (e.g., therapeutic intervention) or after a lapse in time (e.g., functional status 2 years poststroke).
A scoping review is a form of knowledge synthesis that addresses an exploratory research question aimed at mapping key concepts and identifying gaps in research related to a defined area or field by systematically searching, selecting, and synthesizing existing knowledge. This scoping review followed the framework designed by Levac et al., which consists of six stages. However, due to pragmatic constraints, the optional sixth stage (consultation) was excluded. The present scoping review involved five key phases: (a) identifying the research question; (b) identifying relevant studies; (c) selecting studies; (d) charting the data; and (e) collating, summarizing, and reporting the results.
Stage 1: Identifying the research question
The scoping review question was formulated “What is known about outcome measures related to stroke rehabilitation in India?” with the following objectives:
- What outcome measures are used by health-care professionals in India to determine stroke outcomes?
- Are outcome measures used by health-care professionals involved in stroke rehabilitation in India culturally appropriate and valid?
- How many stroke-related outcome measures have been developed and validated in India?
- What are the limitations of the current stroke-related outcome measures used in India?
Stage 2: Identifying relevant studies
The following electronic bibliographic databases were used as the sources of information: Google Scholar, Medline, ProQuest, and PubMed. These databases were selected in an attempt to conduct a comprehensive search that would include stroke-related research from a range of disciplines (occupational therapy, physical therapy, neurology, etc.). The keywords used for the search included “stroke, rehabilitation, and outcome measures.” All searches were conducted with the following filter: the word “India” must be present either in the title or abstract.
Stage 3: Study selection
The selection of studies for inclusion in the review was conducted in two phases: an initial title and abstract screening, followed by full-text review of those articles included after the screening. Before starting the title and abstract screening, the authors held an initial meeting to develop the inclusion criteria in alignment with the review question.
Inclusion criteria were as follows: Articles that (a) were published between 2000 and 2015, (b) were written in English, (c) were peer-reviewed research publications, (d) presented studies of stroke survivors in India, and (e) identified at least one outcome measure (to measure intervention effectiveness/change over time). Following the development of inclusion criteria, the authors conducted the search in all identified databases and saved the articles they believed to be relevant for screening and/or full-text review in a shared Google Drive (https://drive.google.com) using a predetermined file naming convention. The second author reviewed all the saved files in the Drive and eliminated the duplicates. The remaining articles were reviewed independently by both authors for title/abstract screening. Discrepancies in article selection decisions were discussed until a consensus was reached. Phase I yielded 33 articles for full-text review. Impromptu virtual meetings were held as needed for clarification and discussion during the full-text review phase.
Stage 4: Charting the data
The authors virtually met to develop a data-charting form to extract data from the included studies. The charting form was developed based on the research question and related objectives. The information related to the outcome measures, extracted from each article included: (a) title, (b) type, (c) type of variable measured, (d) cultural relevance/appropriateness, (e) psychometric properties, (f) place of origin (within or outside India), (g) justification for use (if identified), (h) information related to adaptation/translation (if identified), and (i) any other pertinent information for this review. Both authors entered the extracted information in a shared Google spreadsheet (data-charting form).
Stage 5: Collating, summarizing, and reporting the results
After data extraction, as suggested by Colquhoun et al., we created tables to summarize our findings, both quantitatively and descriptively.
| Results|| |
The initial search of four databases yielded 94 potentially relevant citations. After eliminating duplicates (n = 16) and completing title and abstract screening, we were left with 38 citations for full-text review. Following the full-text review, 33 citations remained for data extraction and inclusion in the scoping review. The flow of citations from identification to data extraction is presented in [Figure 1].
Outcome Measures Identified
We extracted data regarding the outcome measures used from each identified citation. The number of unique measures used was 46. [Table 1] presents the title, type, and year ( first published) of the identified scales. In addition, [Table 1] classifies the identified scales based on the International Classification of Functioning, Disability, and Health (ICF) Framework, variables under measurement, and language of publication. The following sections present the aggregate data of the classification based on the above-mentioned criteria.
Type of Variable Measured
Of the 46 unique outcome measures, 16 (35%) measures measured physical variables (mobility, movement, strength, etc.), 9 (20%) measured general health and quality of life, 6 (13%) measured functional skills/performance, 6 (13%) measured psychological variables (stress, depression, anxiety, etc.), 5 (11%) measured cognitive skills, 2 (4%) measured both physical and cognitive skills, 1 (2%) measured nutrition, and 1 (2%) measured a contextual variable (perceived rehabilitation needs).
Classification of Tools Based on the International Classification of Functioning, Disability and Health Framework
The World Health Organization has provided a useful framework to classify outcome measures in the field of disability rehabilitation. The authors classified the measures according to the ICF components based on their knowledge and the best available information in the literature. However, the possibility of an outcome measure fitting into more than one ICF component cannot be ruled out. The components of the ICF are “body functions and structures, activities, and participation.” Twenty-two (48%) measures identified in this study measure changes in the body structure and functional component. Eleven (24%) and 13 (28%) measures fit into the activity and participation components of the ICF, respectively.
Language of Identified Measures
With the exception of two measures (Bengali version of Mini-Mental Status Examination and Kolkata Cognitive Screening Battery), the language of all other identified measures is English. However, in several studies, the outcome measures were reported to be administered through interviews in local languages and dialects. Of the 46 measures identified, only two were developed in India (Everyday Abilities Scale of India and Kolkata Cognitive Screening Battery). The languages of these tools, as identified in the literature, were Hindi and Bengali.
Most Used Outcome Measures
Barthel's Index and the Modified Rankin Scale were the most used outcome measures in stroke rehabilitation in India, as reported in the literature. Barthel's Index was used in ten identified studies and the Modified Rankin Scale was used in nine studies. Functional Independence Measure and Berg Balance Scale were identified as an outcome measure in five and four studies, respectively.
Thematic Description of Identified Measures
Prevalent use of ordinal scales
Almost 60% of the identified measures were ordinal scales. These scales provide a rank order characterization of phenomena by describing the direction of an underlying dimension (such as mobility). In these scales, there is no underlying number line with equal intervals. The ordinal scales also allow for stronger forms of statistical analysis as they rank/order the characteristics with respect to each other. This permits researchers to identify which group has more/less of the characteristics being studied. Although the use of ordinal scales offers a fast and inexpensive way to quantify complex phenomena, the information produced by them are difficult to interpret and easy to misuse.
Cultural relevance of identified measures
Although scales related to body function/structure can be construed as culturally relevant tools for a wider population, scales measuring activity limitations and participation cannot be perceived similarly unless they are adapted and validated to ensure cultural relevance. For instance, items on “use of fork and knife” and “yard work” in the Stroke Impact Scale and items such as “washing clothes,” “local shopping,” “actively pursuing hobby,” and “household maintenance” in The Frenchay Activities Index can be perceived differently in the Indian context. Similarly, some items in mobility indices (walk over snow, ice, pavements, kerbs, etc.) and items related to leisure pursuits in measures such as Short Form-36 may not be appropriate in the Indian context.
Several self-assessment questionnaires (Caregiver Strain Index, Geriatric Depression Scale, Nottingham EADL Scale, Oberst Caregiver Burden Scale, etc.) were administered through interviews. This could have been done to overcome linguistic barriers and literacy level challenges of the samples. However, modification, adaptation, or translation of structured tools without validation may compromise the validity and consistency of the tools.
Psychometric properties of scales
Nearly half of the identified measures possess reasonable to high internal consistency; intrarater, inter-rater, and test-retest reliability; and concurrent and construct validity. Although most of the identified scales have been validated for use with the stroke population, some scales, such as the Everyday Abilities Scale of India, the American Speech-Language-Hearing Association National Outcome Measurement Scale, the Kolkata Cognitive Screening Battery, and some anxiety/depression scales were originally developed for use with another population (dementia, psychiatric disorders, etc.).
Use of the World Health Organization Resources
Several studies,, reported the use of measures developed by the World Health Organization such as the Disability Assessment Schedule II and the Quality of Life Questionnaire (World Health Organization Quality of Life-BREF), which are applicable across cultures and available in multiple languages.
| Discussion|| |
This scoping review examined the outcome measures used in stroke rehabilitation in India. Thirty-three studies identified the use of 46 outcome measures. We reviewed the nature, focus, and cultural relevance of the outcome measures used in the included studies. There appears to be a marked heterogeneity in the use of outcome measures related to stroke rehabilitation in India. Thirty-eight of the 46 identified outcome measures were used only in one or two of the included studies. Further, a majority of stroke-related outcome measures used in India were ordinal scales focused on measuring the body function/structure component. Merbitz et al. cautioned rehabilitation professionals when making inferences based on the ordinal scales and argues that misapplications and misinferences of these scales in rehabilitation may mask ineffective treatment procedures and hide efficient procedures. Even though the included studies identify several outcome measures pertaining to activity and participation components of the ICF, their cultural relevance has not been adequately justified in the articles.
As cultural practices, lifestyle, attitude, literacy, and sociopolitical environments differ between Western nations and India, use of outcome measures developed in the Western countries, especially ones focused on activity and participation components of the ICF, may not yield meaningful and sensitive data. Furthermore, the effective administration of foreign developed measures depends on the administrators' ability to comprehend the information and instructions identified in the test manual, which is often in English. Despite these limitations, the majority of the outcome measures identified in the stroke rehabilitation literature of India were from Western countries. Except in a few studies,, no justification was provided regarding the selection and usage of these measures.
Several studies,, identified that the outcome measures used were adapted, translated, or modified to suit study contexts. Some other studies were conducted in rural areas with lower literacy levels. In these instances, one can presume that the investigator(s) might have translated and/or adapted the selected outcome measure to make it suitable for administration. However, there was no explicit information on how this was done (Who did the translation? Was there a back translation? Was the scale field tested and validated posttranslation?). In some studies, the investigators administered questionnaires through interviews by translating the items and response options. The effectiveness of these administrations depends on the investigators/test administrators' level of English proficiency and mastery of the local language. Further, two of the included studies, were multicenter studies. One multicenter study spanned India from Punjab to Andhra Pradesh to Kerala. The level of challenge related to outcome measurement in these types of studies is high because residents belonging to different states speak different languages in India. In these instances, investigators must administer a given outcome measure in multiple languages, and unless the outcome measure is translated and validated in all the languages in which it is administered, the validity and consistency of the findings are questionable.
In some of the included studies, investigators used proxies (family member/caregiver) to obtain information about the patient. This is a common practice in stroke rehabilitation as stroke survivors experience severe cognitive, speech, and/or language deficits. However, there was no explicit information on the efforts taken by investigators to validate the information obtained through proxies.
Research and Practice Implications
Practitioners and researchers involved in stroke rehabilitation in India must consider appropriateness, responsiveness, acceptability, interpretability, and feasibility of an outcome measure, in addition to its psychometric properties, when selecting an outcome measure. They must be mindful of the differences in cultural beliefs, lifestyle, socioeconomic capacity, literacy level, and the physical/social environment of Indian stroke survivors when using outcome measures in practice and research. When administering outcome measures in practice or using them in research, practitioners and researchers must develop a deeper understanding of validity and complete necessary training on how to administer a given measure before using it. In addition, they must exert caution when administering outcome measures to proxies as they tend to overrate or underrate the disability.
Researchers involved in stroke care in India must develop and validate culturally sensitive outcome measures. When using outcome measures in research, they must explicitly identify (i) the rationale behind the selection of outcome measures, (ii) how they adapted/modified a foreign developed outcome measure, and (iii) how they validated an outcome measure postadaptation/modification. In addition, they must strive to improve the rigor of stroke rehabilitation research.
This review has several limitations. First, this review considered only the studies/reports published in English. Second, the gray literature was not included. Next, as the literature search was conducted only in four databases, some relevant publications may not have been included. Further, this review identified the outcome measures used in stroke rehabilitation in India; however, it did not provide a detailed exploration of each of the tools, which is beyond the scope of this review. Furthermore, the search yielded a few studies that used some of the identified tools to profile or categorize stroke survivors in a given geographical area within India. We excluded those studies.
| Conclusion|| |
The cultural and linguistic diversity of India presents a challenge to practitioners and researchers engaged in stroke rehabilitation when they use outcome measures. In the Indian stroke rehabilitation arena, there exists a need to develop valid and culturally sensitive outcome measures. Research-based outcome measures are vital to ensure credible practice and to effectively combat the stroke burden in India.
Financial Support and Sponsorship
Conflicts of Interest
There are no conflicts of interest.
| References|| |
Kamalakannan S, Gudlavalleti AS, Gudlavalleti VS, Goenka S, Kuper H. Incidence & prevalence of stroke in India: A systematic review. Indian J Med Res 2017;146:175-185.
] [Full text]
Colquhoun HL, Levac D, O'Brien KK, Straus S, Tricco AC, Perrier L, et al.
Scoping reviews: Time for clarity in definition, methods, and reporting. J Clin Epidemiol 2014;67:1291-1294.
Levac D, Colquhoun H, O'Brien KK. Scoping studies: Advancing the methodology. Implement Sci 2010;5:69.
Gupta H, Banerjee A. Recovery of dysphagia in lateral medullary stroke. Case Rep Neurol Med 2014;2014:404871.
Akhtar MU, Arora S, Mehndiratta MM. Barriers associated with community access by stroke patients in Indian population. Indian J Physiol Occup Ther 2013;7:260-264.
Lindley RI, Anderson CS, Billot L, Forster A, Hackett ML, Harvey LA, et al
. Family-led rehabilitation after stroke in India (ATTEND): A randomized controlled trial. Lancet 2017;390:588-599.
Sinha AG, Dhamija D, Bindra S. Functional status and disability in stroke survivors of North India. Indian J Physiol Occup Ther 2013;7:240-244.
Prasad K, Dash D, Kumar A. Validation of the Hindi version of national institute of health stroke scale. Neurol India 2012;60:40-44.
] [Full text]
Morgan SB, Kelkar RS, Vyas OA. Client-centered occupational therapy for acute stroke patients. Indian J Occup Ther 2002;34:7-12.
Ghosal MK, Burman P, Singh V, Das S, Paul N, Ray BK, et al.
Correlates of functional outcome among stroke survivors in a developing country – A prospective community-based study from India. J Stroke Cerebrovasc Dis 2014;23:2614-621.
Rai N, Prasad K, Bhatia R, Vibha D, Singh MB, Rai VK, et al.
Development and implementation of acute stroke care pathway in a tertiary care hospital in India: A cluster-randomized study. Neurol India 2016;64 Suppl: S39-45.
Yadav R, Prasad K, Padma VM, Srivastava AK, Tripathi M, Bhatia R, et al.
Influence of socioeconomic status on in-hospital mortality and morbidity after stroke in India: Retrospective hospital-based cohort study. Indian J Community Med 2013;38:39-41.
] [Full text]
Sasisekhar TV, Kodali M, Kiran S. Post stroke functional, cognitive and psychological outcomes and mortality: Data from a tertiary centre in South India. Int J Health Rehabil Sci 2013;2:1-7.
Mohapatra S, Kelker RS. Study on relationship between initial stroke severity and recovery of mobility function in acute stroke inpatients. Indian J Occup Ther 2004;35:3-9.
Pillai AJ, Pavithra S, Jacob SS, Unnikrishnan SV, Nagarajan P, Kattimani S. The relationship between demographic variables and caregiver burden among caregivers of stroke patients attending a tertiary care hospital, South India. Int J Psychiatr Nurs 2016;2:77-81.
Narendra DB, Fagun PB, Smitha D, Shailesh K, Kaushal B. A comparative study of effectiveness of balance training with and without visual cues on activities of daily living in stroke patients. Indian J Physiother Occup Ther 2013;7:285-290.
Shah SB, Jayavant S. Study of balance training in ambulatory hemiplegics. Indian J Occup Ther 2006;38:9-15.
Mishra N. Comparison of effects of motor imagery, cognitive and motor dual task training methods on gait and balance of stroke survivors. Indian J Occup Ther 2015;47:46-51.
Bhattacharjee M, Vairale J, Gawali K, Dalal PM. Factors affecting burden on caregivers of stroke survivors: Population-based study in Mumbai (India). Ann Indian Acad Neurol 2012;15:113-119.
] [Full text]
Ahuja SS, Rege PV, Rege S, Chorghade LU. Study of depth perception in hemiplegics. Indian J Occup Ther 2006;38:31-36.
Prakash V, Ganesan M, Vasanthan R, Hariohm K. Do commonly used functional outcome measures capture activities that are relevant for people with stroke in India? Top Stroke Rehabil 2017;24:200-205.
Mandal AK, Mokashi SP. Effect of occupational therapy task-oriented approach on recovery of upper-extremity motor function and activities of daily living in stroke patients. Indian J Occup Ther 2009;41:31-36.
Mokashi SP, Vivekanand S. Relationship between cognitive deficits and the ability to perform the activities of daily living in stroke patients. Indian J Occup Ther 2005;37:3-9.
Sharma A, Sane H, Badhe P, Kulkarni P, Chopra G, Lohia M, Gokulchandran N. Autologous bone marrow stem cell therapy shows functional improvement in hemorrhagic stroke: A case study. Indian J Clin Pract 2012;23:100-105.
Mandliya A, Das A, Unnikrishnan JP, Amal MG, Sarma PS, Sylaja PN, et al.
Post-stroke fatigue is an independent predictor of post-stroke disability and burden of care: A path analysis study. Top Stroke Rehabil 2016;23:1-7.
Isaac V, Stewart R, Krishnamoorthy ES. Caregiver burden and quality of life of older persons with stroke: A community hospital study in South India. J Appl Gerontol 2011;30:643-654.
Milton SR, Gomes OM. Undivided attention on hand performance in cerebral vascular accident-a controlled trial. Indian J Occup Ther 2007;39:41-46.
Muhapatra J, Mokashi SP. Influence of modified therapeutic work program on return to work abilities in individual with CVA. Indian J Occup Ther 2010;42:3-8.
Pandian JD, Jyotsna R, Singh R, Sylaja PN, Vijaya P, Padma MV, et al.
Premorbid nutrition and short term outcome of stroke: A multicentre study from India. J Neurol Neurosurg Psychiatry 2011;82:1087-1092.
Manorenj S, Inturi S, Jyotsna B, Savya VS, Areli D, Reddy OB. Prevalence, pattern, risk factors and outcome of stroke in women: A clinical study of 100 cases from a tertiary care center in South India. Int J Res Med Sci 2017;4:2388-2393.
Saxena A, Suman A. Magnitude and determinants of depression in acute stroke patients admitted in a rural tertiary care hospital. J Neurosci Rural Pract 2015;6:202-7.
] [Full text]
Borges SA, Vyas O. A study addressing the impact of cognitive and perceptual deficits on sitting and standing balance following cerebrovascular accident. Indian J Occup Ther 2001;33:11-15.
Kamalakannan S, Gudlavalleti Venkata M, Prost A, Natarajan S, Pant H, Chitalurri N, et al.
Rehabilitation needs of stroke survivors after discharge from hospital in India. Arch Phys Med Rehabil 2016;97:1526-32.e9.
Patil P, Rao S. Effects of Thera-Band® elastic resistance-assisted gait training in stroke patients: A pilot study. Eur J Phys Rehabil Med 2011;47:427-433.
Alabdulwahab SS, Ahmad F, Singh H. Effects of functional limb overloading on symmetrical weight bearing, walking speed, perceived mobility, and community participation among patients with chronic stroke. Rehabil Res Pract 2015;2015:241519.
Mann DK, Raja NR, Bhardwaj N, Singh J. Effect of proprioceptive neuromuscular facilitation in hemiplegic gait a randomized trial of 4 weeks and a follow up after 2 weeks. Indian J Physiother Occup Ther 2013;7:59-64.
World Health Organization. How to use the ICF: A Practical Manual for Using the International Classification of Functioning Disability and Health. Exposure Draft for Comment. Geneva: World Health Organization; Updated 2013. Available from: http://www.who.int/classifications/drafticfpracticalmanual.pdf
. [Last accessed on 2018 Aug 16].
Merbitz C, Morris J, Grip JC. Ordinal scales and foundations of misinference. Arch Phys Med Rehabil 1989;70:308-312.
Managh MF, Cook JV. The use of standardized assessment in occupational therapy: The BaFPE-R as an example. Am J Occup Ther 1993;47:877-884.