Health Qual Life Out
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Health Qual Life Out · Aug 2017
The Spanish version of the Patient-Rated Wrist Evaluation outcome measure: cross-cultural adaptation process, reliability, measurement error and construct validity.
The Patient-Rated Wrist Evaluation (PRWE) is a widely used measure of patient-reported disability and pain related to wrist disorders. We performed cross-cultural adaptation of the PRWE into Spanish (Spain) and assessed reliability and construct validity in patients with distal radius fracture. ⋯ The PRWE-Spanish showed high internal-consistency and test-retest reliability and good construct validity in patients with distal radius fracture.
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Health Qual Life Out · Aug 2017
Responsiveness of the PROMIS® measures to changes in disease status among pediatric nephrotic syndrome patients: a Midwest pediatric nephrology consortium study.
Nephrotic syndrome represents a condition in pediatric nephrology typified by a relapsing and remitting course, proteinuria and the presence of edema. The PROMIS measures have previously been studied and validated in cross-sectional studies of children with nephrotic syndrome. This study was designed to longitudinally validate the PROMIS measures in pediatric nephrotic syndrome. ⋯ This study demonstrates that the PROMIS Mobility, Fatigue, Pain Interference, and Anxiety domains are sensitive to self-reported changes in disease and overall health status over time in children with nephrotic syndrome. The lack of significant anchoring to clinically defined nephrotic syndrome disease active and remission status may highlight an opportunity to improve the measurement of HRQOL in children with nephrotic syndrome through the development of a nephrotic syndrome disease-specific HRQOL measure.
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Health Qual Life Out · Aug 2017
Prevalence and its associated psychological variables of symptoms of depression and anxiety among ovarian cancer patients in China: a cross-sectional study.
It is well known that cancer patients tend to have high levels of perceived stress and symptoms of depression and anxiety. However, there is less study on the association between perceived stress and symptoms of depression and anxiety among ovarian cancer patients in China. And the mediating effect of hope and resilience needs to be further studied. In this study, we aim to examine the prevalence of depression and anxiety symptoms, to analyze the association between perceived stress and symptoms of depression and anxiety, and to test whether hope and resilience mediate the association of perceived stress with symptoms of depression and anxiety among Chinese patients with ovarian cancer. ⋯ The present study suggests that perceived stress might be one of the impact factors of symptoms of depression and anxiety, while hope might ease symptoms of depression and anxiety. In view of the role of hope, medical workers and patient caregivers should pay more attention to hope, and then to intervene perceived stress among patients with ovarian cancer.
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Health Qual Life Out · Jul 2017
Adherence to hydroxyurea, health-related quality of life domains, and patients' perceptions of sickle cell disease and hydroxyurea: a cross-sectional study in adolescents and young adults.
Sickle cell disease (SCD) patients have impaired domains of health-related quality of life (HRQOL). Hydroxyurea is safe and efficacious in SCD; however, adherence is suboptimal, and patients' perceptions are poorly understood amongst adolescents and young adults (AYA). Study objectives were to: (1) examine patients' perceptions of SCD and hydroxyurea; and (2) explore the relationship of their perceptions to clinical characteristics, HRQOL domains and hydroxyurea adherence. ⋯ Dynamics influencing hydroxyurea adherence are multifactorial, and understanding patients' perceptions is critical to overcoming adherence barriers. Patients' favorable perceptions correlated with greater adherence and better HRQOL domain scores. Prospective evaluation of patients' perceptions of SCD and hydroxyurea in relation adherence, HRQOL domains and clinical outcomes is warranted.
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Health Qual Life Out · Jun 2017
Observational StudyQualitative modification and development of patient- and caregiver-reported outcome measures for iron chelation therapy.
Compliance, palatability, gastrointestinal (GI) symptom, and treatment satisfaction patient- and observer-reported outcome (PRO, ObsRO) measures were developed/modified for patients with transfusion-dependent anemias or myelodysplastic syndrome (MDS) requiring iron chelation therapy (ICT). ⋯ Qualitative research data from cognitive interviews supports the content validity and relevance of the instruments developed/modified. Quantitative validation of these PRO and ObsRO measures is needed testing for validity, reliability, and responsiveness for future research use with new formulations of oral ICT.