Clinical Factors Affecting Condition-Specific Quality-of-Life Domains in Pediatric Patients after Repair of Esophageal Atresia: The Swedish-German EA-QOL Study

2019 ◽  
Vol 30 (01) ◽  
pp. 096-103 ◽  
Author(s):  
Michaela Dellenmark-Blom ◽  
Julia Quitmann ◽  
Jens Dingemann ◽  
Stefanie Witt ◽  
Benno M. Ure ◽  
...  

Abstract Introduction We aimed to identify clinical factors affecting condition-specific health related quality of life (HRQOL) domains in children born with esophageal atresia (EA). This can facilitate preventive care to risk groups of HRQOL impairments. Materials and Methods A total of 124 Swedish and German families of EA children answered the validated EA-QOL questionnaires (response rate 68%), for evaluation of three HRQOL domains in children 2 to 7 years old (53 parents) and four HRQOL domains in children 8 to 17 years old (62 children/71 parents). Clinical data were collected through medical records and a questionnaire. Statistics included between—group analysis, univariable and stepwise multivariable regression analysis, p < 0.05. Results Between 2 to 7 years, no primary anastomosis (p = 0.022) and female gender (p = 0.026) predicted worse scores related to “physical health and treatment,” and gastrostomy insertion related to “eating” (p = 0.0001), and “social isolation and stress” (p = 0.001). Between 8 to 17 years, no primary anastomosis (child report), prematurity, esophageal dilatation (parent report) predicted poor HRQOL related to “eating” (p < 0.05), associated anomalies to “body perception” (p = 0.031, parent report), female gender (p = 0.018, child report) and severe EA (p = 0.011 child report, p = 0.004 parent report) to “social relationships,” and severe EA predicted worse “health and well-being” scores (p = 0.004, parent report). An increased number of digestive symptoms (difficulty swallowing food, heartburn, and vomiting), lowered all EA-QOL domain scores in both age groups (p < 0.001). An increased number of respiratory problems (cough, wheezing, airway infections. breathlessness, and chest tightness), lowered scores in two HRQOL domains among children 2 to 7 years (p < 0.05). Conclusion Impairments within condition-specific HRQOL domains in EA children are found in congenital and surgical subgroups, and notably related to digestive symptoms throughout childhood.

2016 ◽  
pp. 579 ◽  
Author(s):  
Izabella Uchmanowicz ◽  
Bartosz Uchmanowicz ◽  
Bernard Panaszek ◽  
Joanna Rosińczuk

2020 ◽  
Vol 2020 ◽  
pp. 1-9
Author(s):  
Zsófia Lázár ◽  
Alpár Horváth ◽  
Gábor Tomisa ◽  
Lilla Tamási ◽  
Veronika Müller

Purpose. The health-related quality of life (HRQL) in chronic obstructive pulmonary disease (COPD) is worsened by frequent exacerbations, and it can be affected by the concomitant presence of bronchial asthma (asthma-COPD overlap (ACO)). The impacts of clinical factors associated with HRQL have not been compared in patients with COPD and ACO experiencing exacerbations. Patients and Methods. Patients with COPD (N =705) and ACO (N =148) belonging to C and D groups according to GOLD 2017 were recruited in stable condition. Demographic and clinical data were collected, spirometry was performed, and patients rated the intensity of respiratory symptoms during the previous week. The COPD Assessment Test (CAT) and the EQ-5D 3 level version (dimensions and visual analogue scale (VAS)) were used to assess disease-specific and generic HRQL, respectively. Fisher’s exact test, χ2 test, ANOVA, and Pearson correlation were used for analysis (mean±SD). Multiple linear regression was applied to identify variables related to CAT and EQ-5D VAS scores. Results. The CAT and EQ-5D VAS scores showed similarly low HRQL in COPD and ACO (20.7±6.7 vs. 21.1±6.3 (p=0.52) and 56.2±17.8 vs. 53.7±18.2 (p=0.11)). There was a weak correlation between CAT and EQ-5D VAS scores (COPD: r=−0.345, p<0.001; ACO: r=−0.245, p=0.003). More patients with COPD had problems related to anxiety/depression in EQ-5D (63.7% vs. 55.4%, p=0.06). Pack-years exerted a negative effect on HRQL measures both in ACO and COPD. Low HRQL in COPD was associated with female gender, dyspnea, cough, gastroesophageal reflux disease, and arrhythmia, while in ACO, it was related to arrhythmia, hypertension, and cough, but less to dyspnea. Conclusions. Patients with COPD and ACO experiencing exacerbations have low quality of life, which is influenced by smoking history, symptoms, and comorbidities. These findings have important implications for the development of therapeutic strategies to improve the health status of patients with these conditions.


2012 ◽  
Vol 20 (1) ◽  
pp. 93-100 ◽  
Author(s):  
Adriana Pelegrini dos Santos Pereira ◽  
Claudia Bernardi Cesarino ◽  
Marielza Regina Ismael Martins ◽  
Maria Helena Pinto ◽  
João Gomes Netinho

This study identifies the socio-demographic and clinical factors of patients with irreversible colostomy secondary to colorectal cancer and correlates them with quality of life (QOL). It is a cross-sectional study. Socio-demographic and clinical data were collected through interviews and the WHOQOL-bref to assess QOL. The sample comprised 60 patients. Most of the patients were male, elderly individuals, half were married and half did not have a sexual partner, with complete primary education, receiving up to two times the minimum wage, carried a stoma for three months on average, were instructed they would carry a stoma, but did not have their stoma marked prior to surgery. The average QOL score was 75.500, while the psychological, social and physical domains were the most affected. No statistically significant differences were found in QOL in relation to the following socio-demographic and clinical factors: female gender, low income, no sexual partners, and lack of instruction. The patients with an intestinal stoma presented a satisfactory QOL.


1998 ◽  
Vol 7 (5) ◽  
pp. 387-397 ◽  
Author(s):  
N. C. M. Theunissen* ◽  
T. G. C. Vogels ◽  
H. M. Koopman ◽  
G. H. W. Verrips ◽  
K. A. H. Zwinderman ◽  
...  

2009 ◽  
Vol 15 (12) ◽  
pp. 1502-1508 ◽  
Author(s):  
William S MacAllister ◽  
Christopher Christodoulou ◽  
Regina Troxell ◽  
Maria Milazzo ◽  
Pamela Block ◽  
...  

Fatigue and quality of life are significant concerns in adult multiple sclerosis (MS) but little is known about these factors in pediatric MS. The present investigation evaluates fatigue and quality of life in 51 pediatric MS patients to determine the rate of fatigue and reduced quality of life and assesses the relations between these variables and clinical factors. Fatigue and quality of life were assessed by self- and parent-report via the PedsQL Multidimensional Fatigue Scale and the PedsQL Quality of Life Scale. One-sample t-tests determined if scores were below published data for healthy individuals. Moreover, scores falling one standard deviation from norms were considered mildly affected, with severe difficulties being defined as scores falling two or more standard deviations from norms. Associations between self- and parent-reported difficulties and clinical factors were examined via Pearson correlation analyses. In comparison with healthy samples, pediatric MS patients reported greater difficulties with respect to fatigue, sleep, cognition, physical limitations, and academics. In addition to significant difficulties on these factors, parents reported problems with respect to emotional functioning, and tended to report greater fatigue, sleep, and cognitive difficulties than were self-reported. Expanded Disability Status Scale score was the only neurologic variable significantly related to fatigue or quality of life scores. Fatigue was significantly correlated with reports of sleep difficulties, cognitive problems, and quality of life variables. These findings suggest that fatigue and poorer quality of life is a clear concern in pediatric MS, and is related to overall physical disability.


1998 ◽  
Author(s):  
N. C. M. Theunissen ◽  
G. C. Vogels ◽  
H. M. Koopman ◽  
G. H. Verrips ◽  
A. H. Zwinderman ◽  
...  

2019 ◽  
Vol 32 (Supplement_1) ◽  
Author(s):  
A Pham ◽  
E Dugelay ◽  
A Bonnard ◽  
T Gelas ◽  
V Rousseau ◽  
...  

Abstract Introduction With advances in surgical and neonatal care, survival of patients with esophageal atresia (EA) has improved over time. While a number of conditions associated with EA may have an impact on feeding development (delayed primary anastomosis, anastomotic leaks, recurrent tracheoesophageal fistula, anastomotic stricture, gastroesophageal reflux, esophageal dysmotility, etc.) and although children with EA experience a number of oral aversive events in their first year of life, feeding disorders (FD) are poorly described and frequently unrecognized. The primary aim of this study was to describe FD in children born with EA, with a standardized scale. The secondary aim was to describe conditions associated with FD. Methods FEED-EASY is a multicentric French study. Parents of children born with EA between 2013 and 2016 in one of the 22 participating centers were asked to participate and received the French version of the standardized and reproductive ‘Montreal Children's Hospital Feeding Scale (MCH-FS)’. Results One hundred and forty-five children were included; 61 (42%) had FD according to the MCH-FS. These children were characterized by disinterest in food, oral hypersensitivity, difficulty in touching some textures and food avoidance, with an influence in quality of life. Nineteen (13%) were tube-fed between 1 and 4 years of age. Birth weight and chronic respiratory difficulties were associated with FD in children with EA. Anastomotic stricture (present in 31% of the included children) was not associated with FD. Conclusions FD is frequent and unrecognized in children with EA, and can influence growth and quality of life. MCH-FS allows pediatricians to identify FD in children with EA within a couple of minutes.


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