Health Qual Life Out
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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.
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Health Qual Life Out · Jun 2017
Validity and reliability of the Sri Lankan version of the kidney disease quality of life questionnaire (KDQOL-SF™).
The disabling symptoms, various food and fluid restrictions, restrictions to social life and stigma and taboos attached to Chronic Kidney Disease (CKD), have shown to pose a significant bearing on a patient's Quality of Life (QOL). In the present study the Kidney Disease QOL-Short Form (KDQOL-SF™) was culturally adapted, modified and translated into Sinhala and validity and reliability were assessed. ⋯ KDQOL-SF™ is a valid and reliable instrument which can be used to assess QOL of CKD patients in Sri Lanka.
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Health Qual Life Out · Jun 2017
Sensitivity of alternative measures of functioning and wellbeing for adults with sickle cell disease: comparison of PROMIS® to ASCQ-Me℠.
Sickle Cell Disease (SCD) causes profound suffering and decrements in daily functioning. Demand is growing for valid and reliable measures to systematically document these effects, particularly in adults. The Adult Sickle Cell Quality of Life Measurement System, ASCQ-Me℠, was developed for this purpose. ASCQ-Me℠ is one of four measurement systems housed within the Person-Centered Assessment Resource (PCAR), funded by the National Institutes of Health, to support clinical research. To help users select the best of these measures for adults with SCD, we evaluated and compared two PCAR systems: one designed to be "universally applicable" (the Patient-Reported Outcome Measurement Information System, PROMIS®) and one designed specifically for SCD (ASCQ-Me℠). ⋯ Study results supported the validity of both PROMIS and ASCQ-Me measures for use in adults with SCD. Compared to comparable PROMIS scores, most ASCQ-Me scores were better predictors of SCD disease severity, as measured by a medical history checklist. The clinical implications of these results require further investigation.
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Health Qual Life Out · Jun 2017
Post-traumatic stress disorder in parturients delivering by caesarean section and the implication of anaesthesia: a prospective cohort study.
Post-traumatic stress disorder (PTSD) occurs in 1-7% of women following childbirth. While having a caesarean section (C-section) is known to be a significant risk factor for postpartum PTSD, it is currently unknown whether coexisting anaesthesia-related factors are also associated to the disorder. The aim of this study was to assess anaesthesia-linked factors in the development of acute postpartum PTSD. ⋯ This is the first study to show in parturients having a C-section that an anaesthesia complication is an independent risk factor for postpartum PTSD and PTSD profile development, in addition to known perinatal and maternal risk factors.