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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/DESIGN: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. DISCUSSION: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. TRIAL REGISTRATION:NCT02073955.

SUBMITTER: Khan M

PROVIDER: S-EPMC4367800 | biostudies-literature | 2015 Feb

REPOSITORIES: biostudies-literature

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Study Protocol: Validation and Adaptation of community-worker-administered stroke symptom questionnaire in a periurban Pakistani community to determine disease burden.

Khan Maria M Kamal Ayeesha Kamran AK Pasha Omrana O Islam Muhammad M Azam Iqbal I Virk Azam A Nasir Alia A Andani Anita A Jan Muhammad M Akhtar Anjum A Razzak Junaid Abdul JA

Journal of vascular and interventional neurology 20150201 1

<h4>Background</h4>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 ...[more]

PMID: 25825625

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Project description:ObjectivePatients with multimorbidity may carry a large symptom burden. Symptoms are often what drive patients to seek healthcare and they also assist doctors with diagnosis. We examined whether symptom burden is additive in people with multimorbidity compared with people with a single morbidity.DesignThis is a longitudinal cohort study drawing on questionnaire and Danish national registry data. Multimorbidity was defined as having diagnoses from at least two out of ten morbidity groups. Associations between morbidity groups and symptom burden were estimated with multivariable models.ParticipantsIn 2012, 47 452 participants from the Danish Symptom Cohort answered a questionnaire about symptoms (36 symptoms in total), including whether symptoms were affecting their daily activities (impairment score) and their worries about present symptoms (worry score) (the highest score among the 36 symptoms on a 0-4 scale).Main outcome measureThe primary outcome was symptom burden.ResultsParticipants without morbidity reported 4.77 symptoms (out of 36 possible). Participants with one, two or three morbidities reported more symptoms than patients without morbidity (0.95 (CI 0.86 to 1.03), 1.87 (CI 1.73 to 2.01) and 2.89 (CI 2.66 to 3.12), respectively). Furthermore, they reported a higher impairment score (0.36 (0.32 to 0.39), 0.65 (0.60 to 0.70) and 1.06 (0.98 to 1.14)) and a higher worry score (0.34 (0.31 to 0.37), 0.62 (0.57 to 0.66) and 1.02 (0.94 to 1.10)) than participants without morbidity. In 45 possible combinations of multimorbidity (participants with two morbidities), interaction effects were additive in 37, 41 and 36 combinations for the number of symptoms, impairment score and worry score, respectively.ConclusionParticipants without morbidity reported a substantial number of symptoms. Having a single morbidity or multimorbidity resulted in approximately one extra symptom for each extra morbidity. In most combinations of multimorbidity, symptom burden was additive.

Project description:OBJECTIVES:To determine the prevalence and impact of common co-occurring symptoms among community-dwelling older adults in the United States. DESIGN:The National Health and Aging Trends Study is a nationally representative, prospective study with annual data collection between 2011 and 2017. SETTING:Community-based, in-person interviews (survey response rates, 71%-96%). PARTICIPANTS:A total of 7,609 community-dwelling Medicare beneficiaries, 65 years or older. MEASUREMENTS:Symptoms assessed at baseline include pain, fatigue, breathing difficulty, sleeping difficulty, depressed mood, and anxiety. Total symptom count ranged from zero to six. Several outcomes were examined, including grip strength, gait speed, and overall lower-extremity function as well as incidence of recurrent falls (two or more per year), hospitalization, disability, nursing home admission, and mortality. RESULTS:Prevalence of zero, one, two, three, and four or more symptoms was 25.0%, 26.6%, 20.7%, 14.0%, and 13.6%, respectively. Symptom count increased with advancing age and was higher in women than in men. Pain and fatigue were the most common co-occurring symptoms. Higher symptom count was associated with decreased physical capacity. For example, participants with one, two, three, and four or more symptoms had gait speeds that were 0.04, 0.06, 0.09, and 0.13 m/s slower, respectively, than those with no symptoms, adjusting for specific diseases, total number of diseases, and other potential confounders (P < .001). The risk of several adverse outcomes also increased with greater symptom count. For example, compared with those with no symptoms, the adjusted risk ratios for recurrent falls were 1.48 (95% confidence interval [CI] = 1.30-1.70), 1.54 (95% CI = 1.32-1.80), 1.90 (95% CI = 1.55-2.32), and 2.38 (95% CI = 2.00-2.83) for older adults with one, two, three, and four or more symptoms, respectively. CONCLUSIONS:Symptoms frequently co-occur among community-dwelling older adults and are strongly associated with increased risk of a range of adverse outcomes. Symptoms represent a potential treatment target for improving outcomes and should be systematically captured in health records. J Am Geriatr Soc 67:223-231, 2019.

Project description:ObjectiveTo describe the development and validation of a novel patient reported outcome measure for symptom burden from long covid, the symptom burden questionnaire for long covid (SBQ-LC).DesignMultiphase, prospective mixed methods study.SettingRemote data collection and social media channels in the United Kingdom, 14 April to 1 August 2021.Participants13 adults (aged ≥18 years) with self-reported long covid and 10 clinicians evaluated content validity. 274 adults with long covid field tested the draft questionnaire.Main outcome measuresPublished systematic reviews informed development of SBQ-LC's conceptual framework and initial item pool. Thematic analysis of transcripts from cognitive debriefing interviews and online clinician surveys established content validity. Consensus discussions with the patient and public involvement group of the Therapies for Long COVID in non-hospitalised individuals: From symptoms, patient reported outcomes and immunology to targeted therapies (TLC Study) confirmed face validity. Rasch analysis of field test data guided item and scale refinement and provided initial evidence of the SBQ-LC's measurement properties.ResultsSBQ-LC (version 1.0) is a modular instrument measuring patient reported outcomes and is composed of 17 independent scales with promising psychometric properties. Respondents rate their symptom burden during the past seven days using a dichotomous response or 4 point rating scale. Each scale provides coverage of a different symptom domain and returns a summed raw score that can be transformed to a linear (0-100) score. Higher scores represent higher symptom burden. After rating scale refinement and item reduction, all scales satisfied the Rasch model requirements for unidimensionality (principal component analysis of residuals: first residual contrast values <2.00 eigenvalue units) and item fit (outfit mean square values within 0.5 -1.5 logits). Rating scale categories were ordered with acceptable category fit statistics (outfit mean square values <2.0 logits). 14 item pairs had evidence of local dependency (residual correlation values >0.4). Across the 17 scales, person reliability ranged from 0.34 to 0.87, person separation ranged from 0.71 to 2.56, item separation ranged from 1.34 to 13.86, and internal consistency reliability (Cronbach's alpha) ranged from 0.56 to 0.91.ConclusionsSBQ-LC (version 1.0) is a comprehensive patient reported outcome instrument developed using modern psychometric methods. It measures symptoms of long covid important to people with lived experience of the condition and may be used to evaluate the impact of interventions and inform best practice in clinical management.

Project description:BackgroundAppetite and symptoms, conditions generally reported by the patients with cancer, are somewhat challenging for professionals to measure directly in clinical routine (latent conditions). Therefore, specific instruments are required for this purpose. This study aimed to perform a cultural adaptation of the Cancer Appetite and Symptom Questionnaire (CASQ), into Portuguese and evaluate its psychometric properties on a sample of Brazilian cancer patients.MethodsThis is a validation study with Brazilian cancer patients. The face, content, and construct (factorial and convergent) validities of the Cancer Appetite and Symptom Questionnaire, the study tool, were estimated. Further, a confirmatory factor analysis (CFA) was conducted. The ratio of chi-square and degrees of freedom (?2/df), comparative fit index (CFI), goodness of fit index (GFI) and root mean square error of approximation (RMSEA) were used for fit model assessment. In addition, the reliability of the instrument was estimated using the composite reliability (CR) and Cronbach's alpha coefficient (?), and the invariance of the model in independent samples was estimated by a multigroup analysis (??2).ResultsParticipants included 1,140 cancer patients with a mean age of 53.95 (SD = 13.25) years; 61.3% were women. After the CFA of the original CASQ structure, 2 items with inadequate factor weights were removed. Four correlations between errors were included to provide adequate fit to the sample (?2/df = 8.532, CFI = .94, GFI = .95, and RMSEA = .08). The model exhibited a low convergent validity (AVE = .32). The reliability was adequate (CR = .82 ? = .82). The refined model showed strong invariance in two independent samples (??2: ?: p = .855; i: p = .824; Res: p = .390). A weak stability was obtained between patients undergoing chemotherapy and radiotherapy (??2: ?: p = .155; i: p < .001; Res: p < .001), and between patients undergoing chemotherapy combined with radiotherapy and palliative care (??2: ?: p = .058; i: p < .001; Res: p < .001).ConclusionThe Portuguese version of the CASQ had good face and construct validity and reliability. However, the CASQ still presented invariance in independent samples of Brazilian patients with cancer. However, the tool has low convergent validity and weak invariance in samples with different treatments.

Project description:BackgroundOlder community-dwelling people with multimorbidity are often not only vulnerable, but also suffer from several conditions that could produce a multiplicity of symptoms. This results in a high symptom burden and a reduced health-related quality of life. Even though these individuals often have frequent contact with healthcare providers they are expected to manage both appropriate disease control and symptoms by themselves or with the support of caregivers. The aim of this study was therefore to describe the symptom management strategies used by older community-dwelling people with multimorbidity and a high symptom burden.MethodA qualitative descriptive design using face-to-face interviews with 20 community-dwelling older people with multimorbidity, a high healthcare consumption and a high symptom burden. People ≥75 years, who had been hospitalized ≥3 times during the previous year, ≥ 3 diagnoses in their medical records and lived at home were included. The participants were between 79 and 89 years old. Data were analysed using content analyses.ResultTwo main strategy categories were found: active symptom management and passive symptom management. The active strategies include the subcategories; to plan, to distract, to get assistance and to use facilitating techniques. An active strategy meant that participants took matters in their own hands, they could often describe the source of the symptoms and they felt that they had the power to do something to ease their symptoms. A passive symptom management strategy includes the subcategories to give in and to endure. These subcategories often reflected an inability to describe the source of the symptoms as well as the experience of having no alternative other than passively waiting it out.ConclusionsThese findings show that older people with multimorbidity and a high symptom burden employ various symptom management strategies on daily basis. They had adopted appropriate strategies based on their own experience and knowledge. Healthcare professionals might facilitate daily life for older people with multimorbidity by providing guidance on active management strategies with focus on patient's own experience and preferences.

Project description:Treatment burden refers to the workload imposed by healthcare on patients, and the effect this has on quality of life. The Treatment Burden Questionnaire (TBQ) aims to assess treatment burden in different condition and treatment contexts. Here, we aimed to evaluate the validity and reliability of an English version of the TBQ, a scale that was originally developed in French.The TBQ was translated into English by a forward-backward translation method. Wording and possible missing items were assessed during a pretest involving 200 patients with chronic conditions. Measurement properties of the instrument were assessed online with a patient network, using the PatientsLikeMe website. Dimensional structure of the questionnaire was assessed by factor analysis. Construct validity was assessed by associating TBQ global score wıth clinical variables, adherence to medication assessed by Morisky's Medication Adherence Scale (MMAS-8), quality of life (QOL) assessed by the PatientsLikeMe Quality of Life Scale (PLMQOL), and patients' confidence in their knowledge of their conditions and treatments. Reliability was determined by a test-retest method.In total, 610 patients with chronic conditions, mainly from the USA, UK, Canada, Australia, or New Zealand, completed the TBQ between September and October 2013. The English TBQ showed a unidimensional structure with Cronbach α of 0.90. The TBQ global score was negatively correlated with the PLMQOL score (rs = -0.50; p < 0.0001). Low rather than moderate or high adherence to medication was associated with high TBQ score (mean [SD] TBQ score 61.8 [30.5] vs. 37.7 [27.5]; P < 0.0001). The treatment burden was higher for patients who had insufficient knowledge compared with those who had sufficient knowledge about their treatments (mean ± SD TBQ score 62.3 ± 31.3 vs. 47.8 ± 30.4; P < 0.0001) and conditions (63.0 ± 31.6 vs. 49.3 ± 30.7; P < 0.0001). The intraclass correlation coefficient for the retest (n = 282) was 0.77 (95% CI 0.70 to 0.82).We found that the English TBQ is a reliable instrument in this population, and provide evidence supporting the construct validity for its use to assess treatment burden for patients with one or more chronic conditions in English-speaking countries.

Project description:OBJECTIVE:This paper describes the design and methods of a cluster randomised controlled trial (C-RCT) to determine the effectiveness of a community mobilisation intervention that is designed to reduce the perpetration of violence against women (VAW). METHODS AND ANALYSIS:A C-RCT of nine intervention and nine control clusters is being carried out in a periurban, semiformal settlement near Johannesburg, South Africa, between 2016 and 2018. A community mobilisation and advocacy intervention, called Sonke CHANGE is being implemented over 18 months. It comprises local advocacy and group activities to engage community members to challenge harmful gender norms and reduce VAW. The intervention is hypothesised to improve equitable masculinities, reduce alcohol use and ultimately, to reduce VAW. Intervention effectiveness will be determined through an audio computer-assisted self-interview questionnaire with behavioural measures among 2600 men aged between 18 and 40 years at baseline, 12 months and 24 months. The primary trial outcome is men's use of physical and/or?sexual VAW. Secondary outcomes include harmful alcohol use, gender attitudes, controlling behaviours, transactional sex and social cohesion. The main analysis will be intention-to-treat based on the randomisation of clusters. A qualitative process evaluation is being conducted alongside the C-RCT. Implementers and men participating in the intervention will be interviewed longitudinally over the period of intervention implementation and observations of the workshops and other intervention activities are being carried out. ETHICS AND DISSEMINATION:Ethical approval was obtained from the University of the Witwatersrand Human Research Ethics Committee and procedures comply with ethical recommendations of the United Nations Multi-Country Study on Men and Violence. Dissemination of research findings will take place with local stakeholders and through peer-reviewed publications, with data available on request or after 5 years of trial completion. TRIAL REGISTRATION NUMBER:NCT02823288; Pre-result.

Dataset Information

Study Protocol: Validation and Adaptation of community-worker-administered stroke symptom questionnaire in a periurban Pakistani community to determine disease burden.

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Study Protocol: Validation and Adaptation of community-worker-administered stroke symptom questionnaire in a periurban Pakistani community to determine disease burden.

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