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

BackgroundCancer is a devastating disease and has detrimental effects on the quality of life (QoL) of cancer survivors and interferes with their treatment compliance. The aim of the study is to assess resilience and QoL among cancer survivors and to evaluate the important factors affecting their resilience and QoL, with respect to the Pakistani cultural context.Method and analysisA cross-sectional study will be conducted at a tertiary care hospital in Karachi, Pakistan. A minimum sample size of 250 head and neck cancers and 250 brain tumour survivors with 10% inflation for non-response rate will be required. The SD of QoL and resilience will range from 16.5 to 40.8 for head and neck cancer, and 12.7 to 34.1 for brain tumour, at 5% level of significance, with 2.5 precision. QoL will be assessed by European Organization for Research and Treatment of Cancer (EORTC) QLQ-C30, EORTC QLQ-H&N35 and EORTC QLQ-BN20 and resilience will be evaluated by Wagnild and Young’s 14-item scale. Mean±SD will be reported for resilience and QoL scores. Unadjusted and adjusted β-coefficients, with 95% CI, will be reported by using multiple linear regression analysis. Correlation analysis will also be performed using Pearson or Spearman rank correlation coefficients. A p value of <0.05 will be considered significant.Ethics and disseminationEthical approval has been obtained from the Aga Khan University Pakistan’s Ethical Review Committee. Written informed consent will be taken from the participants by trained research assistants. A trained psychologist will provide on-spot counselling to the participants and those identified with severe depression will be referred to a psychiatrist. The study materials will be kept under lock and key and the electronic data base will be password protected and will only be accessed by the research team. The study findings will be disseminated through publications conferences and workshops and research briefs.Trial registration numberClinicaltrials.gov registry (NCT03466762).

BackgroundWe developed and tested the effectiveness of a tailored health information technology driven intervention: “Talking Prescriptions” (Talking Rx) to improve medication adherence in a resource challenged environment.MethodsWe conducted a parallel, randomized, controlled, assessor-blinded trial at the Aga Khan University (AKU), Karachi, Pakistan. Adults with diagnosis of cerebrovascular accident (CVA) or coronary artery disease (CAD) diagnosed least one month before enrollment, on anti-platelets and statins, with access to a mobile phone were enrolled. The intervention group received a) Daily Interactive Voice Response (IVR) call services regarding specific statin and antiplatelet b) Daily tailored medication reminders for statin and antiplatelet and c) Weekly lifestyle modification messages for a period of 3 months. We assessed Medication adherence to statin and antiplatelets by a validated version of the 8-item Morisky Medication Adherence scale 8 (MMAS-8) at 3 months by a blinded assessment officer. Analysis was conducted by intention-to-treat principle (ITT).ResultsBetween April 2015 and December 2015, 197 participants (99 in intervention and 98 in the usual care group) enrolled in the Talking Rx Study. The dropout rate was 9.6%. Baseline group characteristics were similar. At baseline, the mean MMAS-8 was 6.68 (SD = 1.28) in the intervention group and 6.77 (SD = 1.36) in usual care group. At end of follow-up, the mean MMAS-8 increased to 7.41(0.78) in the intervention group compared with 7.38 (0.99) in usual care group with mean difference of 0.03 (S.D 0.13) (95% C.I [-0.23, 0.29]), which was not statistically significant. (P-Value = 0.40) CVA patients showed a relatively greater magnitude of adherence via the MMAS-8 at the end of follow up where the mean MMAS-8 increased to 7.29 (S.D 0.82) in the intervention group as compared to 7.07(S.D 1.24) in usual care group with mean difference of 0.22 (SD = 0.22) 95% C.I (-0.20, 0.65) with (P-value = 0.15). Around 84% of those on intervention arm used the service, calling at least 3 times and listening to their prescriptions for an average of 8 minutes. No user was excluded due to technologic reasons.ConclusionThe use of a phone based medication adherence program was feasible in LMIC settings with high volume clinics and low patient literacy. In this early study, with limited follow up, the program did not achieve any statistically significant differences in adherence behavior as self—reported by the MMAS-8 Scale.Trial registrationClinical Trials.gov NCT02354040.

Objectives This study assessed resilience in brain tumor patients at a tertiary care hospital in Pakistan (a lower middle‐income country; LMIC) and explored its relationship with patients' sociodemographic factors, clinical characteristics, social support, and mental health. Methods A cross‐sectional survey was conducted amongst adult (≥18 years) patients with brain tumor at the Aga Khan University Hospital, Pakistan. Resilience was assessed by Wagnild and Young's Resilience Scale, and patients' psychosocial characteristics by the Hospital Anxiety and Depression Scale and the Enriched Social Support Instrument. Results A total of 250 patients were included (mean age: 44 years; 68% males), with majority (97.6%) having high social support and only 4.4% and 2% having symptomatic depression and anxiety, respectively. On multivariable linear regression adjusted for covariates, lower resilience was associated with not being involved in household decision‐making (Adjusted Beta Coefficient: 4.58 [95% Confidence Interval:−7.59, −1.56]), not currently working (−2.80 [−4.61, −0.99]), undergoing multiple neurosurgical interventions such as tumor biopsies or resections (−8.64 [−13.11, −4.16]), receiving chemotherapy (−5.17 [−9.51, −0.83]) or combination adjuvant therapy (−2.91 [−5.14, −0.67]), low social support (−7.77 [−13.73, 1.81]), mild depression (−13.00 [‐17.00,‐8.99]) or symptomatic depression (−19.79 [−24.69, −14.89]), and mild anxiety (−4.24 [−7.98, −0.50]). Conclusion Our study highlights the function of familial/household role and working status in mediating resilience, and demonstrates the well‐known protective effect of resilience for mental health in brain tumor patients in Pakistan, a South‐Asian LMIC. These findings are of clinical relevance with regards to the development of culture‐specific evidence‐based resilience‐building interventions that may help patients with brain tumors to cope with the psychological distress of cancer.

BackgroundNon-communicable diseases (NCD) are the leading causes of death globally. In Pakistan, they are among the top ten causes of mortality, especially in the productive age group (30–69 years). Evidence suggests that health perceptions and beliefs strongly influence the health behavior of an individual. We performed focus group interviews to delineate the same so as to design the user interface of a non-invasive stroke risk monitoring device.MethodsIt was a qualitative study, designed to explore how health perceptions and beliefs influence behavior for NCD prevention. Four focus group discussions (FGD) were conducted with 30 stable participants who had diabetes mellitus, ischemic heart disease, blood pressure, and stroke. The data was collected using a semi-structured interview guide designed to explore participants’ perceptions of their illnesses, self-management behaviors and factors affecting them. The interviews were transcribed and content analysis was done using steps of content analysis by Morse and Niehaus [10].ResultsMedication adherence, self-monitoring of blood sugars and blood pressures, and medical help seeking were the commonly performed self-management behaviors by the participants. Personal experience of illness, familial inheritance of disease, education and fear of premature death when life responsibilities were unfulfilled, emerged as strong facilitators of self-management behaviors. A sense of personal invincibility, Fatalism or inevitability, lack of personal threat realization, limited knowledge, inadequate health education, health care and financial constraints appeared as key barriers to the self-management of chronic disease in participants.ConclusionsBehavioural interventional messaging will have to engender a sense of personal vulnerability and yet empower self-efficacy solutions at the individual level to deal with both invincibility and inevitability barriers to adoption of healthy behavior.

Purpose: The 10/66 dementia research group (DRG) diagnostic tool was devised to diagnose dementia in people with low education in low and middle-income countries. This study aimed to validate the 10/66 DRG tool in Urdu in Pakistan. Methodology: People older than or equal to 60 years were included: (1) With normal cognition: no/low education, high education, and depression; (2) People with mild and moderate dementia. The diagnostic and statistical manual IV-TR clinician diagnosis was used as the gold standard for dementia. The Clinician Dementia Rating scale was used to rate dementia severity. The geriatric mental status AGECAT stage I output was used to diagnose depression. The 10/66 battery was comprised of CSI-D (cognitive screening instrument for dementia), CERAD (consortium to establish a registry of Alzheimer disease), and animal naming test. Result: The sensitivity and specificity of CSI-D COG score for diagnosing dementia was 86.7% and 72.1%, for CSI-D DF score was 71.1% and 96.1%, for CERAD-10 word list delayed recall was 85.9% and 62.2% at a cut point of ≥5 words, and 70.3% and 97.7% for 10/66 diagnostic algorithm. Conclusions: The 10/66 DRG tool is a valid instrument for diagnosing dementia in the Urdu-speaking population, including with low education and depression, in Pakistan.

Introduction This study translated and validated the Urdu version of the European Organization for Research and Treatment of Cancer Quality of Life (QoL) Questionnaire (EORTC QLQ-C30) and Brain Module (QLQ-BN20) amongst patients with primary brain tumors (PBT) in Pakistan, and assessed the correlation of QoL with resilience, depression, and anxiety. Methods Translation of the EORTC QLQ-C30 and QLQ-BN20 was performed as per EORTC guidelines. A survey comprising of Urdu translations of EORTC QLQ-C30, QLQ-BN20, Wagnild and Young Resilience Scale (RS-14) and Hospital Anxiety and Depression Scale was administered to patients with PBT at a tertiary care hospital in Pakistan. Reliability (via Cronbach alpha), content validity index (CVI) scores, construct validity, and inter-scale correlations were assessed. Results Our sample consisted of 250 patients with PBT, most commonly glioma (46.8%) and meningioma (21.2%). All patients were able to understand the Urdu translations. The Cronbach alphas for the QLQ-C30 and the QLQ-BN20 were 0.860 and 0.880, respectively. The CVI scores for clarity and relevance were high for both the EORTC QLQ-C30 (0.98 and 0.96, respectively) and the QLQ-BN20 tool (0.81 and 0.95, respectively). The global QoL domain (EORTC QLQ-C30) showed significant positive correlations with resilience (r = 0.422), and significant negative correlations with depression (r =  − 0.541) and anxiety (r =  − 0.502). Strong inter-scale correlations were observed between physical functioning and insomnia (r =  − 0.690) and role functioning and insomnia (r =  − 0.641). Conclusion Our study confirms the Urdu versions of the EORTC QLQ-C30 and QLQ-BN20 as valid clinical tools for the measurement of QoL in primary brain tumors patients within the cultural and socioeconomic context of Pakistan.

Introduction: The study aimed to assess resilience and its associated factors in head and neck cancer patients, post-treatment in a low middle income country (LMIC), Pakistan. Methods: An analytical cross-sectional study was conducted from November 2019 to May 2020 among head and neck cancer patients aged at least 18 years at the largest private tertiary care hospital, in Karachi, Pakistan. Information regarding resilience was collected through Wagnild and Young’s Resilience scale comprising of 14 items (RS-14). Depression and anxiety were assessed via Hospital Anxiety and Depression Scale (HADS) and social support by Enriched Social Support Instrument (ESSI). Results: The data was analyzed by linear regression modeling. Unadjusted and adjusted beta coefficients with 95% CI were reported. Total 250 head and neck cancer patients were recruited, 79% were males. Mean age of the patients was 51.59 years with 93% having high social support and only 8% having severe depression and 3% having severe anxiety. After adjusting for covariates in multivariable analysis lower resilience was associated with severe depression (-17 [-20.98,-12.93]) or borderline depression (-4[-8.41,-0.39]), severe anxiety (-11 [-17.88,-4.18]), low social support (-6 [-9.62,-1.71 ]), family members > 6 in the household (- 2[-4.31,-0.29), smokeless tobacco quitters post- treatment (10 [ 5.79, 14.45]), and those who underwent tracheotomy (-4 [-7.67,-0.21]). There was significant interaction between education and role in the family (decision maker). Conclusion: Resilience and social support is highly prevalent in our part of the world where collectivist culture prevails, thus resulting in low prevalence of depression and anxiety. High resilience score is reported among current smokeless tobacco users as compared to quitters post treatment. Tracheotomy and Large family size are inversely related to resilience. Formal education and decision making power in the household are mediators to resilience, demonstrating protective effect on mental health in head and neck cancer patients. Resilience-building interventions should be formulated to aid head and neck cancer patients to cope with the disease.