Dataset Information

Developing and validating a questionnaire for mortality follow-back studies on end-of-life care and decision-making in a resource-poor Caribbean country.

ABSTRACT:

Background

Palliative and end-of-life care development is hindered by a lack of information about the circumstances surrounding dying in developing and resource-poor countries. Our aims were to develop and obtain face and content validity for a self-administered questionnaire on end-of-life care provision and medical decision-making for use in population-based surveys.

Methods

Modelled on validated questionnaires from research in developed countries, our questionnaire was adapted to the cultural sensitivity and medico-legal context of Trinidad and Tobago. Two sets of semi-structured face-to-face cognitive interviews were done with a sample of physicians, sampling was purposive. Phase 1 assessed interpretation of the questions, terminology and content of the questionnaire. Phase 2 was tested on a heterogeneous group of physicians to identify and fix problematic questions or recurring issues. Adjustments were made incrementally and re-tested in successive interviews.

Results

Eighteen physicians were interviewed nationwide. Adaptations to questionnaires used in developed countries included: addition of a definition of palliative care, change of sensitive words like expedited to influenced, adjustments to question formulations, follow-up questions and answer options on medications used were added, the sequence, title and layout were changed and instructions for completion were included at the beginning of the questionnaire.

Conclusion

A new instrument for assessing and documenting end-of-life care and circumstances of dying in a small, resource-poor Caribbean country was developed and validated, and can be readily used as a mortality follow-back instrument. Our methods and procedures of development can be applied as a guide for similar studies in other small developing countries.

SUBMITTER: Jennings N

PROVIDER: S-EPMC7427774 | biostudies-literature | 2020 Aug

REPOSITORIES: biostudies-literature

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Publications

Developing and validating a questionnaire for mortality follow-back studies on end-of-life care and decision-making in a resource-poor Caribbean country.

Jennings Nicholas N Chambaere Kenneth K Cox Macpherson Cheryl C Cox Karen L KL Deliens Luc L Cohen Joachim J

BMC palliative care 20200814 1

<h4>Background</h4>Palliative and end-of-life care development is hindered by a lack of information about the circumstances surrounding dying in developing and resource-poor countries. Our aims were to develop and obtain face and content validity for a self-administered questionnaire on end-of-life care provision and medical decision-making for use in population-based surveys.<h4>Methods</h4>Modelled on validated questionnaires from research in developed countries, our questionnaire was adapted ...[more]

PMID: 32795270

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Project description:Adopting healthy lifestyles is greatly influenced by an individual's perceived risk of developing non-communicable diseases (NCDs). This study aimed to develop and validate a questionnaire that can assess an individual's perceived risk of developing four major NCDs. We used the exploratory sequential mixed methods design. The qualitative part developed a questionnaire by two rounds of Delphi expert panels. The quantitative part validated the questionnaire using both exploratory (EFA) and confirmatory factor analysis (CFA). We used separate samples for EFA (n = 150) and CFA (n = 210). The participants were aged between 25-60 years of both sexes with no known history of NCDs, and face-to-face interviews were conducted. First, we generated an 86-item questionnaire based on the health belief model. Two expert panels ensured the questionnaire's content validity. The experts removed the overlapped items and items that did not represent the specific construct and developed a 51-item questionnaire. Next, we validated the questionnaire. We conducted a parallel analysis to determine the number of factors to be extracted. EFA constituted a five-factor model with 22 high loading items, which extracted 54% of the variance. We run four CFA models (single factor, five-factor, bifactor, and hierarchical) and tested the hypothesized five-factor model. It was found that the 21-item questionnaire (removed one efficacy item due to low loading) was satisfied with good psychometric properties and fitted with observed data in the bifactor model (RMSEA = 0.051, CFI = 0.954, TLI = 0.938, SRMR = 0.054). Hence, an individual's perceived risk of getting NCDs was constituted with a general perceived risk construct and five specific constructs (perceived susceptibility, perceived barrier, perceived benefit, perceived self-efficacy, and perceived behavioral change intention). It can be measured using the developed questionnaire (NCD-PR5-21). Further research is warranted to assess the questionnaire's utility in a mismatch between risk perception and current risk; and individualized counseling for behavioral change communication.

Project description:BackgroundThe reality of finite resources has a real-world impact on a patient's ability to receive life-saving care in resource-poor settings. Blood for transfusion is an example of a scarce resource. Very few studies have looked at predictors of survival in patients requiring massive transfusion. We used data from a rural hospital in Kenya to develop a prediction model of survival among patients receiving massive transfusion.MethodsPatients who received five or more units of whole blood within 48 hours between 2004 and 2010 were identified from a blood registry in a rural hospital in Kenya. Presenting characteristics and in-hospital survival were collected from charts. Using stepwise selection, a logistic model was developed to predict who would survive with massive transfusion versus those who would die despite transfusion. An ROC curve was created from this model to quantify its predictive power.ResultsNinety-five patients with data available met inclusion criteria, and 74% survived to discharge. The number of units transfused was not a predictor of mortality, and no threshold for futility could be identified. Preliminary results suggest that initial blood pressure, lack of comorbidities, and indication for transfusion are the most important predictors of survival. The ROC curve derived from our model demonstrates an area under the curve (AUC) equal to 0.757, with optimism of 0.023 based on a bootstrap validation.ConclusionsThis study provides a framework for making prioritization decisions for the use of whole blood in the setting of massive bleeding. Our analysis demonstrated an overall survival rate for patients receiving massive transfusion that was higher than clinical perception. Our analysis also produced a preliminary model to predict survival in patients with massive bleeding. Prediction analyses can contribute to more efficient prioritization decisions; these decisions must also include other considerations such as equity, acceptability, affordability and sustainability.

Dataset Information

Developing and validating a questionnaire for mortality follow-back studies on end-of-life care and decision-making in a resource-poor Caribbean country.

Background

Methods

Results

Conclusion

Publications

Developing and validating a questionnaire for mortality follow-back studies on end-of-life care and decision-making in a resource-poor Caribbean country.

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