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Prakash V1, Ganesan M2
1Charotar University of Science &Technology, Ashok & Rita Patel Institute of Physiotherapy, Anand, India, 2Clarke University, Department of Physiotherapy, Dubuque, United States
Background: Measuring what matters to patients using patient‐reported outcome measures (PROMs) is proclaimed as sine qua non of health outcome measurement. PROMs assess outcomes from patient's perspective. In choosing what to assess, it is therefore crucial that we define and agree on “what should be measured” from the patients' perspective. Several commonly used PROMs in the field of stroke rehabilitation are predominantly originated from western countries. As a result, contents of commonly used PROMs in stroke do not completely represent the views of non-Western population from the regions such as Asia, Middle East, South America and Africa. Consequently, generalization of results derived from these PROMs across different settings may be problematic. Therefore, a clearly defined conceptual framework of outcomes that matter to patients with stroke within non-Western cultural context is critical.
Purpose: The purpose of this study was to develop a conceptual framework for participation in daily activities based on the views of patients with stroke living in India.
Methods: A cross sectional qualitative study within constructivist paradigm using a phenomenological approach was employed. Individual face-to-face semi-structured interviews with patients (N=32) diagnosed with stroke were carried out using a interview guide consisting open ended questions about their post stroke concerns and rehabilitation goals. We used WHO's ICF as conceptual framework to focus our research question and to determine the initial coding scheme or relationships between codes (a deductive category application). Data was collected in three rural and two urban rehabilitation settings located in western and southern regions of India. Content analysis was used to evaluate the data gathered during the interview. We adopted a directed approach to contents analysis, a recommended approach to analyse the data when an existing theory or prior research work is used to develop initial coding.
Results: Our study participants identified squatting and sitting on the floor, walking (as a mode of transport for traveling short distance), visiting friends and relatives and attending social functions such as weddings, returning to work (for men), resuming household activities (for women) as valued goals for post stroke rehabilitation. Patients had restricted repertoire of social activities prior to stroke. Living with extended family benefited patients in managing their restrictions in participating in domestic life activities. Based on the results, a conceptual framework showing post stroke outcome concepts and its interrelationship specific to Indian context was developed.
Conclusion(s): There are distinct differences in the post-stroke concerns and goals expressed by patients with stroke in India when compared to patient population studied in other settings. Outcome measures for stroke rehabilitation in India, therefore, need to include these activities which patients value and perceive as important for participation in desired social roles.
Implications: Results of this study provide useful insights into what to measure as post stroke outcomes within Indian cultural context. Thus, serve as useful guide for designing and evaluating culturally appropriate interventions for patients with stroke and their families in developing countries.
Keywords: Patient reported outcome measure, Stroke, India
Funding acknowledgements: The author(s) received no specific funding for this work
Purpose: The purpose of this study was to develop a conceptual framework for participation in daily activities based on the views of patients with stroke living in India.
Methods: A cross sectional qualitative study within constructivist paradigm using a phenomenological approach was employed. Individual face-to-face semi-structured interviews with patients (N=32) diagnosed with stroke were carried out using a interview guide consisting open ended questions about their post stroke concerns and rehabilitation goals. We used WHO's ICF as conceptual framework to focus our research question and to determine the initial coding scheme or relationships between codes (a deductive category application). Data was collected in three rural and two urban rehabilitation settings located in western and southern regions of India. Content analysis was used to evaluate the data gathered during the interview. We adopted a directed approach to contents analysis, a recommended approach to analyse the data when an existing theory or prior research work is used to develop initial coding.
Results: Our study participants identified squatting and sitting on the floor, walking (as a mode of transport for traveling short distance), visiting friends and relatives and attending social functions such as weddings, returning to work (for men), resuming household activities (for women) as valued goals for post stroke rehabilitation. Patients had restricted repertoire of social activities prior to stroke. Living with extended family benefited patients in managing their restrictions in participating in domestic life activities. Based on the results, a conceptual framework showing post stroke outcome concepts and its interrelationship specific to Indian context was developed.
Conclusion(s): There are distinct differences in the post-stroke concerns and goals expressed by patients with stroke in India when compared to patient population studied in other settings. Outcome measures for stroke rehabilitation in India, therefore, need to include these activities which patients value and perceive as important for participation in desired social roles.
Implications: Results of this study provide useful insights into what to measure as post stroke outcomes within Indian cultural context. Thus, serve as useful guide for designing and evaluating culturally appropriate interventions for patients with stroke and their families in developing countries.
Keywords: Patient reported outcome measure, Stroke, India
Funding acknowledgements: The author(s) received no specific funding for this work
Topic: Outcome measurement; Neurology: stroke
Ethics approval required: Yes
Institution: Ashok & Rita Patel Institute of Physiotherapy
Ethics committee: Institutional Review Board
Ethics number: ARIP/IRB/15/43
All authors, affiliations and abstracts have been published as submitted.
