Patient related outcome measures
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Patient Relat Outcome Meas · Jan 2021
Retracted PublicationIncidence and Risk Factors of Emergence Delirium after Anesthesia in Elderly Patients at a Postanesthesia Care Unit in Ethiopia: Prospective Observational Study.
For legal reasons, the publisher has withdrawn this article from public view. For additional information, please contact the publisher.
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Patient Relat Outcome Meas · Jan 2021
Deriving Vignettes for the Rare Disease AADC Deficiency Using Parent, Caregiver and Clinician Interviews to Evaluate the Impact on Health-Related Quality of Life.
Aromatic l-amino acid decarboxylase (AADC) deficiency is a rare genetic condition, characterised by movement disorder, and speech and cognitive functioning impairment. To enable economic evaluation of treatments, health-related quality of life or utilities need to be derived. These are currently lacking in the literature. This is challenging, where patient numbers are small, particularly in paediatric populations. This study outlines the 5-stage development of vignettes describing AADC, for use in a subsequent health-state utility elicitation study, with an emphasis on caregiver and clinician engagement. ⋯ The differing focus of caregivers, clinicians and the literature reinforces the importance of patient/caregiver engagement. The vignettes need to comprehensively capture what it is like to live with AADC deficiency, in order for the subsequent utilities to be robust. A focus on evidence triangulation, especially for idiopathic conditions, and how engagement is sought from caregivers are important future avenues of research.
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Patient Relat Outcome Meas · Jan 2019
Mild-severe hemophilia B impacts relationships of US adults and children with hemophilia B and their families: results from the B-HERO-S study.
The B-HERO-S study evaluated the impact of mild to severe hemophilia B on the lives of affected adults and children. Here, we assessed the impact of hemophilia B on relationships. ⋯ Although the impact of severe hemophilia on relationships has been reported in HERO and other studies, B-HERO-S suggested that mild to moderate hemophilia B also significantly influences relationships of affected men/women and boys/girls, especially in disclosing their diagnosis, selecting a partner, and feeling bullied by peers/colleagues.
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Patient Relat Outcome Meas · Jan 2019
Knowledge and Attitudes of Ethiopian Nursing Staff Regarding Post-Operative Pain Management: A Cross-Sectional Multicenter Study.
Pain management is one part of management in the postoperative period. The prevalence of moderate to severe postoperative pain and its functional interference is high in Ethiopian patients. In this study we aimed (1) to assess nurses' knowledge and attitudes regarding post-operative pain management; (2) to identify the factors of nurses' knowledge and attitudes. ⋯ Although more than half of nurses in the study area had adequate knowledge towards POP management, only a small number had a positive attitude. Taking POP management training and getting access to read journals were significantly associated with good knowledge and attitude towards POP management; therefore, regular in-service training and getting accessing reading materials (such as journals or articles) are recommended to enhance quality service to patients.
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Patient Relat Outcome Meas · Jan 2019
Correlations between patient-reported outcomes and self-reported characteristics in adults with hemophilia B and caregivers of children with hemophilia B: analysis of the B-HERO-S study.
Pain, anxiety, depression, and other aspects of health-related quality of life (HRQoL) are important issues for people with hemophilia and caregivers of children with hemophilia. Patient-reported outcome (PRO) instruments may be used to assess aspects of HRQoL; however, the use of PROs in clinical management of patients with hemophilia is limited and inconsistent. The Bridging Hemophilia B Experiences, Results and Opportunities Into Solutions (B-HERO-S) study evaluated the impact of hemophilia B on HRQoL and other psychosocial aspects in affected adults and caregivers of children with hemophilia B. This post hoc analysis assessed correlations between PRO scores and psychosocial questions commonly asked in comprehensive care settings among B-HERO-S respondents. ⋯ High correlations were observed between PRO scores measuring pain, depression, and anxiety and questions commonly used in the comprehensive care setting to assess the psychosocial impact of hemophilia.