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      Quality of life after stroke in Pakistan

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          Abstract

          Background

          There is very little information about the quality of life (QOL) of stroke survivors in LMIC countries with underdeveloped non communicable health infrastructures, who bear two thirds of the global stroke burden.

          Methodology

          We used a sequential mix methods approach. First, a quantitative analytical cross-sectional study was conducted on 700 participants, who constituted 350 stroke survivor and their caregiver dyads. QOL of stroke survivor was assessed via Stroke Specific Quality of Life Scale (SSQOLS) whereas QOL of caregivers was assessed through RAND-36. In addition; we assessed complications, psychosocial and functional disability of stroke survivors. Following this quantitative survey, caregivers were qualitatively interviewed to uncover contextually relevant themes that would evade quantitative surveys. Multiple linear regression technique was applied to report adjusted β-coefficients with 95% C.I.

          Results

          The QOL study was conducted from January 2014 till June 2014, in two large private and public centers . At each center, 175 dyads were interviewed to ensure representativeness. Median age of stroke survivors was 59(17) years, 68% were male, 60% reported depression and 70% suffered post-stroke complications. The mean SSQOLS score was 164.18 ± 32.30. In the final model severe functional disability [adjβ -33.77(-52.44, -15.22)], depression [adjβ-23.74(-30.61,-16.82)], hospital admissions [adjβ-5.51(-9.23,-1.92)] and severe neurologic pain [adjβ -12.41(-20.10,-4.77)] negatively impacted QOL of stroke survivors ( P < 0.01).

          For caregivers, mean age was 39.18 ± 13.44 years, 51% were female and 34% reported high stress levels. Complementary qualitative study revealed that primary caregivers were depressed, frustrated, isolated and also disappointed by health services.

          Conclusion

          The QOL of Stroke survivors as reported by SSQOLS score was better than compared to those reported from other LMIC settings. However, Qualitative triangulation revealed that younger caregivers felt isolated, depressed, overwhelmed and were providing care at great personal cost. There is a need to develop cost effective holistic home support interventions to improve lives of the survivor dyad as a unit.

          Trial registration

          NCT02351778 (Registered as Observational Study).

          Electronic supplementary material

          The online version of this article (doi:10.1186/s12883-016-0774-1) contains supplementary material, which is available to authorized users.

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          Most cited references32

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          National, regional, and global trends in systolic blood pressure since 1980: systematic analysis of health examination surveys and epidemiological studies with 786 country-years and 5·4 million participants.

          Data for trends in blood pressure are needed to understand the effects of its dietary, lifestyle, and pharmacological determinants; set intervention priorities; and evaluate national programmes. However, few worldwide analyses of trends in blood pressure have been done. We estimated worldwide trends in population mean systolic blood pressure (SBP). We estimated trends and their uncertainties in mean SBP for adults 25 years and older in 199 countries and territories. We obtained data from published and unpublished health examination surveys and epidemiological studies (786 country-years and 5·4 million participants). For each sex, we used a Bayesian hierarchical model to estimate mean SBP by age, country, and year, accounting for whether a study was nationally representative. In 2008, age-standardised mean SBP worldwide was 128·1 mm Hg (95% uncertainty interval 126·7-129·4) in men and 124·4 mm Hg (123·0-125·9) in women. Globally, between 1980 and 2008, SBP decreased by 0·8 mm Hg per decade (-0·4 to 2·2, posterior probability of being a true decline=0·90) in men and 1·0 mm Hg per decade (-0·3 to 2·3, posterior probability=0·93) in women. Female SBP decreased by 3·5 mm Hg or more per decade in western Europe and Australasia (posterior probabilities ≥0·999). Male SBP fell most in high-income North America, by 2·8 mm Hg per decade (1·3-4·5, posterior probability >0·999), followed by Australasia and western Europe where it decreased by more than 2·0 mm Hg per decade (posterior probabilities >0·98). SBP rose in Oceania, east Africa, and south and southeast Asia for both sexes, and in west Africa for women, with the increases ranging 0·8-1·6 mm Hg per decade in men (posterior probabilities 0·72-0·91) and 1·0-2·7 mm Hg per decade for women (posterior probabilities 0·75-0·98). Female SBP was highest in some east and west African countries, with means of 135 mm Hg or greater. Male SBP was highest in Baltic and east and west African countries, where mean SBP reached 138 mm Hg or more. Men and women in western Europe had the highest SBP in high-income regions. On average, global population SBP decreased slightly since 1980, but trends varied significantly across regions and countries. SBP is currently highest in low-income and middle-income countries. Effective population-based and personal interventions should be targeted towards low-income and middle-income countries. Funding Bill & Melinda Gates Foundation and WHO. Copyright © 2011 Elsevier Ltd. All rights reserved.
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            The epidemiologic transition: a theory of the epidemiology of population change. 1971.

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              Development of a stroke-specific quality of life scale.

              Clinical stroke trials are increasingly measuring patient-centered outcomes such as functional status and health-related quality of life (HRQOL). No stroke-specific HRQOL measure is currently available. This study presents the initial development of a valid, reliable, and responsive stroke-specific quality of life (SS-QOL) measure, for use in stroke trials. Domains and items for the SS-QOL were developed from patient interviews. The SS-QOL, Short Form 36, Beck Depression Inventory, National Institutes of Health Stroke Scale, and Barthel Index were administered to patients 1 and 3 months after ischemic stroke. Items were eliminated with the use of standard psychometric criteria. Construct validity was assessed by comparing domain scores with similar domains of established measures. Domain responsiveness was assessed with standardized effect sizes. All 12 domains of the SS-QOL were unidimensional. In the final 49-item scale, all domains demonstrated excellent internal reliability (Cronbach's alpha values for each domain >/=0.73). Most domains were moderately correlated with similar domains of established outcome measures (r2 range, 0.3 to 0.5). Most domains were responsive to change (standardized effect sizes >0.4). One- and 3-month SS-QOL scores were associated with patients' self-report of HRQOL compared with before their stroke (P<0.001). The SS-QOL measures HRQOL, its primary underlying construct, in stroke patients. Preliminary results regarding the reliability, validity, and responsiveness of the SS-QOL are encouraging. Further studies in diverse stroke populations are needed.
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                Author and article information

                Contributors
                wardah.khalid@aku.edu
                shafquat.rozi@aku.edu
                tazeen.ali@aku.edu
                iqbal.azam@aku.edu
                mmullen@mail.med.upenn.edu
                ms.ilyas@duhs.edu.pk
                dr_qamar_mukhtar@hotmail.com
                nabila61@gmail.com
                9221-34930051-4669 , ayeesha.kamal@aku.edu
                Journal
                BMC Neurol
                BMC Neurol
                BMC Neurology
                BioMed Central (London )
                1471-2377
                3 December 2016
                3 December 2016
                2016
                : 16
                : 250
                Affiliations
                [1 ]Fogarty Cerebrovascular Research Fellow, The International Cerebrovascular Translational Clinical Research Training Program (Fogarty International Center, National Institutes of Health) and Aga Khan University, Karachi, Pakistan
                [2 ]Department of Community Health Sciences, Epidemiology & Biostatistics, Director Clinical Research Track (CRT), Aga Khan University, Karachi, Pakistan
                [3 ]School of Nursing and Midwifery (SONAM), Karachi, Pakistan
                [4 ]Department of Community Health Sciences, Aga Khan University Hospital, Karachi, Pakistan
                [5 ]Department of Neurology, Perelman School of Medicine at the University of Pennsylvania, Philadelphia, USA
                [6 ]Development Centre DOW University of Health Sciences, Karachi, Pakistan
                [7 ]Department of Neurology, DOW University of Health Sciences, Karachi, Pakistan
                [8 ]Department of Medicine, Lecturer, Section of Neurology, Aga Khan University, Karachi, Pakistan
                [9 ]Institute of Physical Medicine and Rehabilitation, DOW University of Health Sciences, Karachi, Pakistan
                [10 ]The International Cerebrovascular Translational Clinical Research Training Program, Fogarty International Center and the National Institute of Neurologic Disorders and Stroke, Aga Khan University, Stadium Road, 74800 Karachi, Pakistan
                [11 ]Department of Medicine, Aga Khan University, Karachi, Pakistan
                Article
                774
                10.1186/s12883-016-0774-1
                5135839
                27912744
                c4a7206b-b9b2-4cdb-b6a9-2d971949ee4d
                © The Author(s). 2016

                Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

                History
                : 2 October 2015
                : 28 November 2016
                Funding
                Funded by: FundRef http://dx.doi.org/10.13039/100000002, National Institutes of Health;
                Award ID: 5D43TW008660-04
                Award Recipient :
                Categories
                Research Article
                Custom metadata
                © The Author(s) 2016

                Neurology
                stroke specific quality of life scale (ssqols),post-stroke depression,lmic (lower middle income country),fgd`s (focus group discussion) sequential mix methods,triangulation,epidemiology,complications,chronic disease

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