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Table of Contents
REVIEW ARTICLE
Year : 2018  |  Volume : 50  |  Issue : 4  |  Page : 111-118

Outcome measures used in stroke rehabilitation in India: A scoping review


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 Submission26-Sep-2018
Date of Acceptance05-Dec-2018
Date of Web Publication06-Feb-2019

Correspondence Address:
Dr. Karthik Mani
No. 335, W Side Dr, Gaithersburg, MD 20878
USA
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/ijoth.IJOTH_9_18

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  Abstract 


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

How to cite this URL:
Mani K, Sundar S. Outcome measures used in stroke rehabilitation in India: A scoping review. Indian J Occup Ther [serial online] 2018 [cited 2019 Jul 20];50:111-8. Available from: http://www.ijotonweb.org/text.asp?2018/50/4/111/251764




  Introduction Top


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.[1] 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.[2]

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 Top


Aim

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).

Framework

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.[3] This scoping review followed the framework designed by Levac et al.,[4] 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:

  1. What outcome measures are used by health-care professionals in India to determine stroke outcomes?
  2. Are outcome measures used by health-care professionals involved in stroke rehabilitation in India culturally appropriate and valid?
  3. How many stroke-related outcome measures have been developed and validated in India?
  4. 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.,[3] we created tables to summarize our findings, both quantitatively and descriptively.


  Results Top


Quantitative Findings

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].
Figure 1: Article Selection Process

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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.
Table 1: Outcome Measures Used in Stroke Rehabilitation in India

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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.[38] 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.[39]

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.

Modified administration

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.[40]

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[7],[8],[27] 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 Top


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.[39] 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,[9],[27] no justification was provided regarding the selection and usage of these measures.

Several studies[9],[10],[11] 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[7],[30] were multicenter studies. One multicenter study[30] 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.[2] 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.

Limitations

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 Top


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

Nil.

Conflicts of Interest

There are no conflicts of interest.



 
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