The Psychosocial Impact of Fabry Disease on Pediatric Patients.

J Pediatr Genet

Department of Clinical Psychology, Palo Alto University, Palo Alto, California, United States.

Published: September 2016

Fabry disease (FD) is a multisystemic disease that has previously been reported to result in poorer quality of life and psychosocial functioning in impacted adults. However, prior to the current study, limited data were available on the impact of FD in children and adolescents. Therefore, the present study examined the differences of quality of life, psychosocial functioning, and depression in children with FD as compared with a healthy sample. Results indicated that children with FD were experiencing poorer quality of life than their healthy counterparts. Notably, results consistently identified adolescents with FD as more heavily impacted than younger children, although not to the same degree as adults with FD as reported in previous studies. Therefore, adolescence may be a critical point in the development of individuals with FD during which effective multidisciplinary interventions could be utilized to prevent poor quality of life and psychosocial functioning in adulthood.

Download full-text PDF

Source
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4999331PMC
http://dx.doi.org/10.1055/s-0036-1584357DOI Listing

Publication Analysis

Top Keywords

quality life
16
life psychosocial
12
psychosocial functioning
12
fabry disease
8
poorer quality
8
psychosocial
4
psychosocial impact
4
impact fabry
4
disease pediatric
4
pediatric patients
4

Similar Publications

Introduction: Chronic obstructive pulmonary disease (COPD) is associated with exacerbations which can reduce quality of life and increase mortality. Single-inhaler triple therapy (SITT) is recommended for maintenance treatment of COPD among patients experiencing exacerbations despite dual-therapy use. This real-world comparative effectiveness study compared the impact of SITTs, fluticasone furoate/umeclidinium/vilanterol (FF/UMEC/VI), and budesonide/glycopyrrolate/formoterol fumarate (BUD/GLY/FORM), on COPD exacerbations and mortality.

View Article and Find Full Text PDF

Objectives: To report the results of an international patient-reported survey that adds to the growing body of evidence surrounding the role of surgery in the management of a subset of patients with non-hydrocephalic symptomatic pineal cyst.

Design: An international web-based survey of health outcomes in patients with nhSPC.

Subjects: All survey participants who self-reported a diagnosis of symptomatic pineal cyst without hydrocephalus after radiological imaging.

View Article and Find Full Text PDF

Purpose: The aim of this study was to investigate the effect of a 6-month Guolin Qigong on quality of life and serum cortisol among patients with cancer.

Methods: This study was a two-arm and non-randomized controlled trial. Forty-nine patients with cancer who were over 18 years of age and diagnosed with cancer were enrolled in this study and assigned to either the Guolin Qigong intervention group (IG, n = 26) or the usual care group (UC, n = 23) for 6 months.

View Article and Find Full Text PDF

Purpose: With the increasing demand for dialysis, there is a growing emphasis on patient-centered care. This study investigated patients' satisfaction levels with peritoneal dialysis (PD) and hemodialysis (HD) care in Iran.

Methods: A cross-sectional multicenter study was conducted among 346 patients with chronic kidney disease (CKD) covered by the Iran Health Insurance Organization who received dialysis services from October to December 2022 across the country.

View Article and Find Full Text PDF

Background: Despite constant improvements, incontinence is one of the most relevant and quality-of-life-reducing side effects of radical prostatectomy (RP) and, in addition to patient-specific factors such as age, the experience of the surgeon/center and the surgical technique used play an important role.

Aims: To present current real-world data on short-term incontinence after RP from one of the largest German rehabilitation centers in 2022 and to compare it to the results from the same institution in 2016.

Methods And Results: Retrospective, unicentric, univariate analysis of data from 1394 men after RP in 2022 on admission and discharge from the rehabilitation clinic.

View Article and Find Full Text PDF

Want AI Summaries of new PubMed Abstracts delivered to your In-box?

Enter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!