title: Quality of life after stroke in Pakistan.
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.
  
  
  METHODS
  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.
  
  
  CONCLUSIONS
  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.
  
  
  BACKGROUND
  NCT02351778 (Registered as Observational Study).
authors.affiliation: 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.
authors.forename: Wardah
authors.initials: W
authors.lastname: Khalid
authors.affiliation: Department of Community Health Sciences, Epidemiology & Biostatistics, Director Clinical Research Track (CRT), Aga Khan University, Karachi, Pakistan.
authors.forename: Shafquat
authors.initials: S
authors.lastname: Rozi
authors.affiliation: School of Nursing and Midwifery (SONAM), Karachi, Pakistan.|Department of Community Health Sciences, Aga Khan University Hospital, Karachi, Pakistan.
authors.forename: Tazeen Saeed
authors.initials: TS
authors.lastname: Ali
authors.affiliation: Department of Community Health Sciences, Aga Khan University Hospital, Karachi, Pakistan.
authors.forename: Iqbal
authors.initials: I
authors.lastname: Azam
authors.affiliation: Department of Neurology, Perelman School of Medicine at the University of Pennsylvania, Philadelphia, USA.
authors.forename: Michael T
authors.initials: MT
authors.lastname: Mullen
authors.affiliation: Development Centre DOW University of Health Sciences, Karachi, Pakistan.
authors.forename: Saleem
authors.initials: S
authors.lastname: Illyas
authors.affiliation: Department of Neurology, DOW University of Health Sciences, Karachi, Pakistan.|Department of Medicine, Lecturer, Section of Neurology, Aga Khan University, Karachi, Pakistan.
authors.forename: Qamar
authors.initials: Q
authors.lastname: Un-Nisa
authors.affiliation: Institute of Physical Medicine and Rehabilitation, DOW University of Health Sciences, Karachi, Pakistan.
authors.forename: Nabila
authors.initials: N
authors.lastname: Soomro
authors.affiliation: 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. ayeesha.kamal@aku.edu.|Department of Medicine, Aga Khan University, Karachi, Pakistan. ayeesha.kamal@aku.edu.
authors.forename: Ayeesha Kamran
authors.initials: AK
authors.lastname: Kamal
mesh_terms: D000328:Adult; D000368:Aged; D017028:Caregivers / Q000523:psychology*; D003430:Cross-Sectional Studies; D003863:Depression / Q000523:psychology; D005260:Female; D006760:Hospitalization; D006801:Humans; D008297:Male; D008875:Middle Aged; D010154:Pakistan; D011788:Quality of Life / Q000523:psychology*; D020521:Stroke / Q000150:complications / Q000523:psychology*; D011795:Surveys and Questionnaires; D017741:Survivors / Q000523:psychology
keywords: Chronic Disease; Complications; Epidemiology; FGD`S (Focus group discussion) Sequential Mix Methods; LMIC (Lower middle income country); Post-stroke depression; Stroke Specific Quality of life scale (SSQOLS); Triangulation