Search results for "patient-reported outcome"

Health-Related Quality of Life Issues Experienced by Thoracic and Breast Sarcoma Patients: A Rare and Understudied Group

2021

Thoracic and breast sarcomas constitute a rare subgroup within the sarcoma population. There is limited knowledge about their health-related quality of life (HRQoL) and a valid disease-specific HRQoL instrument is lacking. This qualitative study aimed to investigate the HRQoL issues experienced by a small group of thoracic and breast sarcoma patients. Semi-structured interviews with 19 thoracic and four breast sarcoma patients were conducted and thematically analysed. Physical issues mentioned by both groups were fatigue, sleep disturbances, pain, wound infections, and symptoms related to chemotherapy and radiotherapy. Tightness in the back and restrictions in performing tasks above arm hei…

Validity and reliability of the motivation for physical activity (RM4-FM) questionnaire

2021

There is a lack of validated instruments measuring motivation for physical activity (RM4-FM) in the Finnish language. The study examined the translated RM4-FM instrument’s psychometric properties in a sample of healthy, older Finnish adults. RM4-FM was translated and linguistically validated adhering to published guidelines. 65–75-year olds (n=102), completed the RM4-FM, the physical activity acceptance questionnaire (PAAQ) and sociodemographic characteristics questionnaires electronically. The RM4-FM was readministered one month after the initial assessment. RM4-FM translated well into Finnish. Motivation dimension scores were skewed towards high internal and low external motivation. A flo…

Patient Reported Outcome in metastatic breast cancer and platinum-resistant recurrent ovarian cancer treated with metronomic cyclophosphamide ± metho…

2021

Development and validation of the Urticaria Control Test: a patient-reported outcome instrument for assessing urticaria control.

2013

Background Chronic urticaria is a frequent and debilitating skin disease. Its symptoms commonly fluctuate considerably from day to day. As of yet, the only reliable tool to assess disease activity is the Urticaria Activity Score, which prospectively documents the signs and symptoms of urticaria for several days. Objective We sought to develop and validate a novel patient-reported outcome instrument to retrospectively assess urticaria control, the Urticaria Control Test (UCT). Methods Potential UCT items were developed by using established methods (literature research and expert and patient involvement). Subsequently, item reduction was performed by using a combined approach, applying impact…

Compliance with patient-reported outcome assessment in glioma patients: predictors for drop out

2017

Abstract Background Patient-reported outcomes are of high importance in clinical neuro-oncology. However, assessment is still suboptimal. We aimed at exploring factors associated with the probability for a) drop out of study and b) death during follow-up. Methods Patients were assessed twice during follow-up visits scheduled within 3 to 5 months of each other by using 3 validated patient-reported outcome measures (t1: first assessment, t2: second assessment). As “death” was seen as a competing risk for drop out, univariate competing risk Cox regression models were applied to explore factors associated with dropping out (age, gender, WHO grade, living situation, recurrent surgery, Karnofsky …

Validity of five foot and ankle specific electronic patient-reported outcome (ePRO) instruments in patients undergoing elective orthopedic foot or an…

2019

Background: Patient-reported outcomes (PROS) are widely accepted measures for evaluating outcomes of surgical interventions. As patient-reported information is stored in electronic health records, it is essential that there are valid electronic PRO (ePRO) instruments available for clinicians and researchers. The aim of this study was to evaluate the validity of electronic versions of five widely used foot and ankle specific PRO instruments. Methods: Altogether 111 consecutive elective foot/ankle surgery patients were invited face-to-face to participate in this study. Patients completed electronic versions of the Foot and Ankle Ability Measure (FAAM), the Foot and Ankle Outcome Score (FAOS),…

The Urticaria Activity Score-Validity, Reliability, and Responsiveness.

2018

Background Chronic spontaneous urticaria is characterized by fluctuating symptoms. Its activity is assessed with the urticaria activity score (UAS). Two versions of the urticaria activity score used for 7 consecutive days (UAS7) are available: (1) The guideline-recommended UAS7, with once-daily documentation, and (2) the UAS7TD, with twice-daily documentation. Objective To better characterize both UAS7 versions with regard to their validity, reliability, sensitivity to change, minimal important difference (MID), and smallest detectable change (SDC). Methods One hundred thirty adult patients with chronic spontaneous urticaria completed both UAS7 versions, the Patients Global Assessment (PatG…

The ceiling effects of patient reported outcome measures for total knee arthroplasty

2020

Abstract Background Patient reported outcome measurements (PROMs) that exhibit a substantial ceiling effect show clustering of participant's scores towards the upper limit of a scale and consequently have low discriminatory power among high end scores. This study aimed to compare ceiling effects at 1 and 2 years postoperatively across commonly usedPROMs for TKA. Hypothesis We hypothesized, that the analyzed PROMs differ substantially in regards to their ceiling effect. Patients and methods Patients that underwent a primary unilateral TKA and completed pre-operative and post-operative questionnaires were included in the analysis. Participants completed the KOOS, KOOS-12, KOOS-JR, KOOS-PS, WO…

Impact of depressive symptoms on subjective well-being: the importance of patient-reported outcomes in schizophrenia

2011

Jorge Mauriño1, Julio Sanjúan2, Josep Maria Haro3, Teresa Díez1, Javier Ballesteros41AstraZeneca Medical Department, Madrid, Spain; 2Department of Psychiatry, University of Valencia, CIBERSAM, Valencia, Spain; 3Parc Sanitari Sant Joan de Deu, CIBERSAM, Sant Boi de Llobregat, Spain; 4Department of Neuroscience-Psychiatry, University of the Basque Country, UPV/EHU, CIBERSAM, Leioa, SpainObjective: The subjective experience of psychotic patients toward treatment is a key factor in medication adherence, quality of life, and clinical outcome. The aim of this study was to assess the subjective well-being in patients with schizophrenia and to examine its relationsh…

Burden of disease in patients with Morquio A syndrome: results from an international patient-reported outcomes survey

2013

WOS: 000335253700001