Search results for "QOL"
showing 10 items of 48 documents
Home infusion program with enzyme replacement therapy for Fabry disease: The experience of a large Italian collaborative group
2017
Fabry disease (FD) [OMIM 301500] is an X-linked lysosomal storage disorder caused by a deficiency of the lysosomal enzyme alpha-galactosidase A, resulting in progressive multisystem accumulation of globotriaosylceramide (Gb3). Although the introduction of Enzyme Replacement Therapy (ERT) resulted in a variety of clinical benefits, life-long intravenous (IV) treatment with ERT with an every other week schedule, may interfere with daily life activities and impact on QoL. We report here a multicentric, observational, longitudinal data analysis on a large cohort of 85 Italian FD patients (45 males, 40 females) from 11 out of 20 Italian regions, who received a cumulative number of 4269 home infu…
Systematic review of the health-related quality of life issues facing adolescents and young adults with cancer
2017
Contains fulltext : 174665.pdf (Publisher’s version ) (Open Access) PURPOSE: For adolescents and young adults (AYAs), the impact of a cancer diagnosis and subsequent treatment is likely to be distinct from other age groups given the unique and complex psychosocial challenges of this developmental phase. In this review of the literature, we report the health-related quality of life (HRQoL) issues experienced by AYAs diagnosed with cancer and undergoing treatment. METHODS: MEDLINE, EMBASE, CINAHL, PsychINFO and the Cochrane Library Databases were searched for publications reporting HRQoL of AYAs. Issues generated from interviews with AYAs or from responses to patient reported outcome measures…
Inguinal hernioplasty improves the quality of life in patients with cirrhosis.
2008
Abstract Background The optimal management of symptomatic inguinal hernia (SIH) in cirrhotics is still undefined. Both hernia and cirrhosis impair quality of life (QOL). The aim of this study was to evaluate QOL by a Short Form-36 (SF-36) questionnaire in cirrhotic patients undergoing inguinal hernioplasty. Methods Thirty-two cirrhotic patients undergoing inguinal hernioplasty were evaluated. They were classified according to Child's class and to the absence or presence of refractory ascites. The SF-36 questionnaire was administered the day before and 6 months after surgery. Global analyses of the 8 domains of SF-36 and of 2 comprehensive indexes of SF-36, Physical Component Summary (PCS) a…
Application of tRNS to improve multiple sclerosis fatigue: a pilot, single-blind, sham-controlled study
2019
We evaluated the effects of transcranial random noise stimulation (tRNS) on fatigue in 17 subjects with relapsing–remitting multiple sclerosis with low physical disability. Two different patient groups underwent real or sham stimulation for 10 days, targeting the primary motor cortex of the dominant side or contralateral to the most compromised limb. In the ‘real group’, beneficial effects were observed using the Modified Fatigue Impact Scale (p = 0.04; physical subscale: p = 0.03), the subscales ‘change in health’ (p = 0.006) and ‘role limitations due to physical problems’ (p = 0.001) of the Multiple Sclerosis Quality of Life-54, and by assessing the patient impression of perceived fatigue…
The Fertility Quality of Life Questionnaire (FertiQoL) Relational subscale: psychometric properties and discriminant validity across gender.
2016
Study question Is the Fertility Quality of Life Questionnaire (FertiQoL)-Relational Scale a valid measure to assess the relational domain regarding quality of life in women and men undergoing infertility treatment? Summary answer The FertiQoL-Relational scale (FertiQoL-REL) showed good psychometric properties and captured core aspects of couple relationships. What is known already FertiQoL has become a gold standard for the assessment of infertility-related quality of life in patients undergoing assisted reproduction treatment (ART). Despite its growing importance, no previous studies have examined the convergent validity of the FertiQoL-REL and its discriminant validity across gender. Stud…
A cross-sectional study of Health Related Quality of Life and body mass index in a Norwegian school sample (8-18 years): a comparison of child and pa…
2014
Background Because consequences of pediatric overweight and obesity are largely psychosocial, the aim of this study was to describe health related quality of life (HRQoL), the prevalence of overweight and obesity, and to examine the relationships between HRQoL and body mass index (BMI), age, and gender in a Norwegian sample of schoolchildren. In addition, because children are dependent upon their parents’ judgment of their condition, the aim was also to compare child- and parent-reported HRQoL and BMI, age, and gender. Methods This cross-sectional study involved 1238 children (8–18 years) and 828 parents. HRQoL was measured with the Norwegian version of the KIDSCREEN-52, child and parent ve…
Psychometric Field Study of Hereditary Angioedema Quality of Life Questionnaire for Adults:HAE-QoL
2016
Background: Hereditary angioedema due to C1 inhibitor deficiency (C1-INH-HAE) may affect health-related quality of life (HRQoL). A specific HRQoL questionnaire for adult patients with C1-INH-HAE, the HAE-QoL, has recently been developed in Spain. Objective: The objective of this study was to perform a cross-cultural validation and psychometric study of the HAE-QoL in an international setting. Methods: Cross-cultural adaptation of the Spanish HAE-QoL draft version and an international rating phase with experts were performed. The resultant version of the HAE-QoL, a clinical questionnaire, and Short Form 36-item Health Survey Version 2.0 (SF-36v2) were pilot tested internationally. Item reduc…
Health-related quality of life in epilepsy: findings obtained with a new Italian instrument
2008
The aim of the present study was to evaluate the Epi-QoL, a new Italian-specific measure of health-related quality of life (HRQOL) for adults with epilepsy; the clinical variables that affected the HRQOL score were also assessed. The Epi-QoL is a 46-item self-administered questionnaire focusing on six domains: Physical Functioning, Cognitive Functioning, Emotional Well-Being, Social Functioning, Seizure Worry, and Medication Effects. Eight hundred fifteen patients recruited from 24 secondary and tertiary Italian centers for the care of epilepsy were assessed. The results supported the reliability and validity of the Epi-QoL as a measure of HRQOL. The variables that significantly affected HR…
Does thyroid surgery for Graves' disease improve health-related quality of life?
2012
Abstract PURPOSE: Graves' disease can induce alterations of the psychosocial well-being that negatively influence the overall well-being of patients. Among the current treatments, surgery has limited indications, and its impact on the health-related quality of life has not been well clarified. The aim of this study was to assess the impact of surgery on the quality of life. METHODS: Fifty-seven patients who underwent total thyroidectomy for Graves' disease in our surgical unit between April 2002 and December 2009 were administered a questionnaire concerning four issues: organic alterations and clinical manifestations, neurovegetative system disturbances, impairment of daily activities, psyc…
Clinical and Functional Outcome After Abdominal Wall Incisional Hernia Repair: Evaluation of Quality-of-Life Improvement and Comparison of Assessment…
2019
Background Hernias severely impact patient quality of life (QoL), and 80% of patients need surgical operation. The primary outcome of the study is to assess improvements in balance, posture and deambulation after abdominal hernia repair. Moreover, the study investigated the improvement in the postoperative QoL. Methods Patients operated at the Policlinico “Paolo Giaccone” at Palermo University Hospital between June 2015 and June 2017 were identified in a prospective database. The functional outcome measures and QoL assessment scales used were numeric rating scale for pain, performance-oriented mobility assessment (POMA) scale, Quebec back pain disability scale, center of gravity (barycenter…