title: Study Protocol: Validation and Adaptation of community-worker-administered stroke symptom questionnaire in a periurban Pakistani community to determine disease burden.
abstract: BACKGROUND
  Stroke is the second leading cause of mortality and the leading cause of disability in the world today. The disease burden is on the rise in developing nations, but there is scarcity of data from these regions to inform policy decisions. Stroke burden can be determined by clinical diagnosis alone in the public health context and is a far more feasible way to assess disease status in low- to middle-income countries like Pakistan. We aim to translate and adapt a validated stroke symptom questionnaire, train community health workers in its administration, and verify it against assessment by two trained neurologists.
  
  
  METHODS
  This is a prospective study, which we aim to carry out in Ibrahim Hyderi, a periurban slum of Karachi. We translated into Urdu the questionnaire for verifying stroke free status (QVSFS), which is an internationally validated tool to assess the same. Two community health workers (CHW) will be identified and will receive training by neurologists, which will include teaching regarding stroke pathophysiology, symptomatology, and detection. They will be familiarized with the QVSFS, and their questionnaire administration will be assessed through roleplay. We intend to recruit 322 subjects from the same community and the CHWs will gather data on them. The same subjects will later be assessed by two trained neurologists, and the findings collaborated to validate those obtained by the CHWs. Sensitivity, specificity, positive and negative predictive values, and Cohen's kappa will be determined for the CHW-administered questionnaire tested against assessment by two neurologists together and separately for the two CHWs. Data analysis will be done using SPSS version 19.0.
  
  
  CONCLUSIONS
  The results of this study will determine if and how well CHW-administered questionnaires are at assessing stroke status in a community. This will facilitate use of the same as a practical alternative for stroke surveillance in the country.
  
  
  BACKGROUND
  NCT02073955.
authors.affiliation: Fogarty Cerebrovascular Research Fellow, The International Cerebrovascular Translational Clinical Research Training Program ( Fogarty International Center, National Institutes of Health) and Department of Medicine, Aga Khan University, Karachi, Pakistan ; Joint First Authors.
authors.forename: Maria
authors.initials: M
authors.lastname: Khan
authors.affiliation: Associate Professor Neurology, Stroke Service, The International Cerebrovascular Translational Clinical Research Training Program (Fogarty International Center, National Institutes of Health) and Department of Medicine, Aga Khan University, Karachi, Pakistan ; Joint First Authors.
authors.forename: Ayeesha Kamran
authors.initials: AK
authors.lastname: Kamal
authors.affiliation: Associate Professor, Director Masters in Epidemiology and Biostatistics program, Department of Community Health Sciences, Aga Khan University, Karachi, Pakistan.
authors.forename: Omrana
authors.initials: O
authors.lastname: Pasha
authors.affiliation: Senior Instructor, Department of Community Health Sciences, Aga Khan University, Karachi, Pakistan.
authors.forename: Muhammad
authors.initials: M
authors.lastname: Islam
authors.affiliation: Assistant Professor, Department of Community Health Sciences, Aga Khan University, Karachi, Pakistan.
authors.forename: Iqbal
authors.initials: I
authors.lastname: Azam
authors.affiliation: Field Coordinator, AMAN Foundation, Karachi, Pakistan.
authors.forename: Azam
authors.initials: A
authors.lastname: Virk
authors.affiliation: Senior Community Work, AMAN Foundation, Karachi, Pakistan.
authors.forename: Alia
authors.initials: A
authors.lastname: Nasir
authors.affiliation: Research Coordination and Data Management Stroke Service, The International Cerebrovascular Translational Clinical Research Training Program (Fogarty International Center, National Institutes of Health) , Section of Neurology, Department of Medicine, Aga Khan University, Karachi, Pakistan.
authors.forename: Anita
authors.initials: A
authors.lastname: Andani
authors.affiliation: Research Coordination and Data Management Stroke Service, The International Cerebrovascular Translational Clinical Research Training Program (Fogarty International Center, National Institutes of Health) , Section of Neurology, Department of Medicine, Aga Khan University, Karachi, Pakistan.
authors.forename: Muhammad
authors.initials: M
authors.lastname: Jan
authors.affiliation: Post Graduate Medical Education Stroke Fellow, Aga Khan University, Karachi, Pakistan.
authors.forename: Anjum
authors.initials: A
authors.lastname: Akhtar
authors.affiliation: Chairman and Associate Professor, Department of Emergency Medicine, Aga Khan University and Chief Executive Officer- AMAN Health, AMAN Foundation Karachi, Pakistan.
authors.forename: Junaid Abdul
authors.initials: JA
authors.lastname: Razzak
keywords: Burden of Stroke; QVSFS; Validation; stroke symptom questionnaire (SSQ)
references.citation: Rev Neurol. 2004 Aug 16-31;39(4):301-4
references.pmid: 15340885
references.citation: Stroke. 2001 Oct;32(10):2232-6
references.pmid: 11588306
references.citation: J Hum Hypertens. 2006 Jan;20(1):83-5
references.pmid: 16151442
references.citation: Arch Iran Med. 2013 Jan;16(1):4-11
references.pmid: 23273227
references.citation: Lancet Neurol. 2007 Feb;6(2):134-9
references.pmid: 17239800
references.citation: J Vasc Interv Neurol. 2014 May;7(1):1-4
references.pmid: 24920980
references.citation: CMAJ. 2006 Oct 24;175(9):1071-7
references.pmid: 17060656
references.citation: Am J Prev Med. 2007 Nov;33(5):418-27
references.pmid: 17950408
references.citation: Cerebrovasc Dis. 2004;17(2-3):218-23
references.pmid: 14707425
references.citation: J Pak Med Assoc. 2011 Mar;61(3):210-5
references.pmid: 21465929
references.citation: Bull World Health Organ. 1976;54(5):541-53
references.pmid: 1088404
references.citation: Neuroepidemiology. 2011;36(2):100-4
references.pmid: 21311197
references.citation: Sao Paulo Med J. 2010 Jul;128(4):225-31
references.pmid: 21120435
references.citation: Health Educ Res. 2010 Oct;25(5):815-40
references.pmid: 20603384
references.citation: Age Ageing. 2009 Jan;38(1):4-5
references.pmid: 19141505
references.citation: Lancet Neurol. 2009 Apr;8(4):355-69
references.pmid: 19233729
references.citation: Lancet Neurol. 2007 Feb;6(2):182-7
references.pmid: 17239805
references.citation: Neuroepidemiology. 2012;38(3):123-9
references.pmid: 22433930
references.citation: Stroke. 2007 Mar;38(3):906-10
references.pmid: 17272773
references.citation: Int J Stroke. 2011 Aug;6(4):346-8
references.pmid: 21745346
references.citation: Am J Epidemiol. 1996 Nov 1;144(9):849-56
references.pmid: 8890663
references.citation: J Stroke Cerebrovasc Dis. 1992;2(2):92-9
references.pmid: 26486579
references.citation: Stroke. 2000 May;31(5):1076-80
references.pmid: 10797168
references.citation: Heart. 2008 Jan;94(1):16-26
references.pmid: 18083949
references.citation: Biometrics. 1977 Mar;33(1):159-74
references.pmid: 843571
references.citation: BMC Neurol. 2009 Dec 01;9:58
references.pmid: 19948076
references.citation: Acta Cardiol. 2003 Aug;58(4):309-20
references.pmid: 12948036
references.citation: Neurology. 1997 Feb;48(2):346-51
references.pmid: 9040719
references.citation: Neuroepidemiology. 1997;16(1):15-21
references.pmid: 8994936
references.citation: J Pak Med Assoc. 2008 Jul;58(7):400-3
references.pmid: 18988415
references.citation: World Neurosurg. 2011 Dec;76(6 Suppl):S85-90
references.pmid: 22182277