Patient related outcome measures
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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.
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Patient Relat Outcome Meas · Jan 2019
Hemophilia and sexual health: results from the HERO and B-HERO-S studies.
Sexual health plays a primary role in quality of life (QoL) for many people, including those with hemophilia; however, there is little information available about sexual relationships and satisfaction in patients with hemophilia. ⋯ The results of these studies demonstrate that the impact of hemophilia extends to intimacy and suggest the need for large-scale studies in additional countries to explore further the factors associated with sexual health issues in people with hemophilia.