Health-related quality of life in children and adolescents with stroke, self-report and parent/proxy report: Cross sectional investigation

2011 ◽  
Vol 26 (S2) ◽  
pp. 330-330
Author(s):  
B. Neuner ◽  
S. von Mackensen ◽  
S. Friedfeld ◽  
G. DeVeber ◽  
U. Nowak-Göttl
Keyword(s):  
Quality Of Life ◽  
Children And Adolescents ◽  
Well Being ◽  
Pediatric Stroke ◽  
Stroke Survivors ◽  
Healthy Controls ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

BackgroundAim of the present study was to assess health-related quality of life (HR-QoL) by self and proxy-parent assessment in children and adolescents who survived a first stroke episode.MethodsWe investigated HR-QoL in 133 pediatric stroke survivors (71 preschool children (G1) aged 4 to < 8 years and 62 school children/adolescents (G2) aged 8 to 21 years) and in 169 healthy controls aged 4 – 16 years. HR-QoL was assessed with the generic KINDL-R questionnaire exploring overall well-being and 6 sub-dimensions (physical well-being, psychological well-being, self-esteem, family-related well-being, friend-related well-being, and school-related well-being. Proxy-parent reports explored overall well-being and sub-dimensions. Results were compared within groups between cases and controls. In pediatric stroke survivors the neurological long-term outcome was measured with the standardized Pediatric Stroke Outcome Measure.Results65% of stroke survivors exhibited at least one motor-sensor/cognitive disability. G1 and G2 stroke survivors reported lower overall well-being compared with healthy controls. In G2 stroke survivors, friend-related well-being was significantly reduced compared with healthy controls, 85.0 vs. 73.0 points, p < 0.001. Parents/proxys of both G1 and G2 stroke survivors rated the overall well-being and all sub-dimensions (except family-related and school-related well-being and in G1 stroke survivors physical functioning) lower compared with parent/proxys of healthy children/adolescents.InpretationOur results suggest that the KINDL-R questionnaire is a useful tool in the assessment of HR-QoL in pediatric stroke survivors. Compared with healthy controls, all pediatric/adolescent stroke survivors are strongly affected regarding their overall well-being and older children/adolescents regarding their well-being with peers.

scholarly journals Parent-reported sleep problems in children and adolescents with sickle cell disease: relationship to health-related quality of life

2021 ◽  
Author(s):  
Serkan Gunes ◽  
Rahime Aldemir ◽  
Adem Gunes ◽  
Ozalp Ekinci
Keyword(s):  
Quality Of Life ◽  
Children And Adolescents ◽  
Sickle Cell ◽  
Sleep Problems ◽  
Well Being ◽  
Health Related Quality ◽  
Cell Disease ◽  
Related Quality ◽  
Health Related

IntroductionChildren with sickle cell disease (SCD) can present a variety of clinical symptoms that may affect their sleep and health-related quality of life (HRQOL). This study aims to investigate the relation between sleep problems and HRQOL in children and adolescents with SCD.Material and methodsThe sample included 86 children and adolescents in the SCD patient group and 82 healthy controls, with an age range of 8-16 years. Subjects for the study were recruited from the Sickle Cell and Thalassemia Center of Hatay State Hospital, Hatay, Turkey. The Children’s Sleep Habits Questionnaire (CSHQ) was used to evaluate sleep problems and Kinder Lebens­qualitätsfragebogen: Children’s Quality of Life Questionnaire – revis­ed (KINDL-R) was used to examine HRQOL.ResultsTotal score, bedtime resistance, and night waking subscores of CSHQ were significantly higher in children with SCD when compared to healthy children. Total score, physical well-being, emotional well-being, social, and school subscores of KINDL-R were significantly lower in the patient group. Among SCD children, total score, bedtime resistance, sleep onset delay, daytime sleepiness, and parasomnias subscores of CSHQ were negatively correlated with KINDL-R total score. In the regression model, disease severity and CSHQ total score had significant negative associations with KINDL-R total score.ConclusionsSleep problems in SCD children appear to be negatively linked with HRQOL. Disease severity and sleep problems may be predictors of overall HRQOL in children and adolescents with SCD.

scholarly journals Health-related quality of life in children and adolescents with overweight and obesity: results from the German KIGGS survey

2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Lara Meixner ◽  
Caroline Cohrdes ◽  
Anja Schienkiewitz ◽  
Gert B. M. Mensink
Keyword(s):  
Quality Of Life ◽  
Children And Adolescents ◽  
Well Being ◽  
Normal Weight ◽  
Overweight And Obesity ◽  
Media Consumption ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

Abstract Background The well-being of persons with overweight and obesity, in particular of children and adolescents, may be impaired. The present study investigates the health-related quality of life (HRQoL) of girls and boys with overweight and obesity living in Germany as compared to those of normal-weight, while taking a selection of relevant determinants of HRQoL into account. Methods The sample comprises 1771 children and adolescents aged 11 to 17 years that took part in the cross-sectional German Health Interview and Examination Survey for Children and Adolescents (KIGGS Wave 2, 2014–2017). Sex-and age-specific BMI (kg/m2) percentiles were utilized to classify overweight and obesity. HRQoL was measured with the KIDSCREEN-27 questionnaire, which gathers detailed information about the five dimensions physical and psychological well-being, well-being regarding peers (i.e., social acceptance), parents (i.e., autonomy) and within the school environment. Multiple regression analyses were performed with HRQoL dimensions as outcomes to test for differences between children and adolescents with normal-weight vs. those with overweight and vs. those with obesity, separately for girls and boys. In a next step, age, physical activity, media consumption, social support and self-efficacy were considered as potential confounders in the analyses. Results 18.7% of the children and adolescents under study were affected by overweight and among them 8.0% by obesity. After adjusting for potential confounders, overweight and obesity were associated with lower physical well-being as compared to normal weight in both sexes (boys with overweight: standardized beta [β] = −.14, standard error [SE] = .03, p < .001, and obesity: β = −.16, SE = .03, p < .001; girls with overweight: β = −.09, SE = .04, p = .011, and obesity: β = −.11, SE = .03, p = .003). Results moreover suggest lower levels of psychological (β = −.10, SE = .04, p = .002) and parent-related well-being (β = −.08, SE = .04, p = .036) of boys with obesity as compared to normal-weight peers. Conclusion HRQoL of German children and adolescents with overweight and obesity is impaired according to physical well-being in general, while psychological and parent-related well-being is particularly affected in boys. Public health approaches should therefore promote children and adolescents with overweight and obesity by improving diverse facets of HRQoL as well as relevant associated factors (i.e., media consumption, self-efficacy) in general and in boys in particular.

Health-Related Quality of Life in Children and Adolescents: Subjective Well Being

2012 ◽  
Vol 15 (1) ◽  
pp. 177-186 ◽  
Author(s):  
Tania Gaspar ◽  
José Pais Ribeiro ◽  
Margarida Gaspar de Matos ◽  
Isabel Leal ◽  
Aristides Ferreira
Keyword(s):  
Quality Of Life ◽  
Health Behavior ◽  
Children And Adolescents ◽  
Latent Variables ◽  
Well Being ◽  
Integrative Model ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

The main objective of this study was to build a model, which includes personal and social factors, that helps to highlight factors that promote health-related quality of Life (HRQoL) in children and in adolescents. A sample of 3195 children and adolescents was acquired from 5th and 7th graders from all five Portuguese regions. In this study three independent latent variables were specified – Physical, Psychological and Social and two dependent latent variables were measured: Health behavior and Quality of Life. The integrative model was composed by different components: (1) health-related quality of life, integrated by 8 dimensions from KIDSCREEN-52; (2) health behavior, (3) variables related to physical health; (4) variables related to social health; (5) variables related to psychological health. As results were found strong correlation between psychological dimensions and self-esteem and other factors and a structural equation model was developed. The model presented a RMSEA index of .08. Similarly, adjustment levels for the CFI, NFI and IFI vary above or around .90, which suggests a good adjustment for the hypothesized model. The model presented significant qui-square.This study showed that in all the samples studied, the psychological variables were those that contributed at a superior level to HRQoL.

Health-related quality of life in children with hereditary angioedema compared with patients with histaminergic angioedema

2021 ◽  
Vol 42 (4) ◽  
pp. 325-332 ◽  
Author(s):  
Melike Ocak ◽  
Ercan Nain ◽  
Aysegul Akarsu ◽  
Umit Murat Sahiner ◽  
Bulent Enis Sekerel ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Symptom Onset ◽  
Hereditary Angioedema ◽  
Well Being ◽  
Healthy Controls ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Parent Proxy

Background: Hereditary angioedema (HAE) is a potentially life-threatening disease that remarkably impacts patients' health-related quality of life (HRQoL). This study evaluated the HRQoL in children with HAE and compared it with healthy controls and patients with histaminergic angioedema (HA). Methods: Fifty-nine children with HAE (median [interquartile range {IQR}], ages, 8.9 years [5.4‐12.6 years]), 60 children with HA (median [IQR] ages, 10.3 years [8‐15.4 years]), and 72 healthy controls (median [IQR] ages, 10.3 years [6.6‐13.9 years]) were recruited. All the children and their families completed the age-adapted KINDL generic instrument for assessing health-related quality of life in children and adolescents. Results: The total HRQoL score and other subscales scores of both the patients with HAE and patients with HA, and the parent-proxy reports were significantly lower than those of the healthy children (p < 0.05). In the patients with HAE, the age at symptom onset was positively correlated with physical well-being (r = 0.335; p = 0.043) and negatively correlated with self-esteem (r = ‐0.324; p = 0.049). In addition, the physical well-being scores were affected by the site of attacks, which was significantly lower in the patients with abdominal pain attacks (p = 0.045). The family scores and total scores were statistically significantly higher in the HA group than the HAE group (p < 0.001 and p = 0.009, respectively). A significant correlation was found between self-report and parent-proxy HRQoLs in total and all subscales scores in the patients with HAE. For HA, there were no significant correlations for family scores. Conclusion: HAE caused significant impairment of the HRQoL of children and their families, and affected their lifestyle and quality of life. In pediatric patients with HAE, the HRQoL is mainly related to age at symptom onset and the site of attacks. Although patients with HAE are affected more negatively than the patients with HA, HA affected the quality of life as well.

Self- and Parent/Proxies-Reported Health-Related Quality Of Life In Children and Adolescents With Bleeding Disorders: Cross Sectional Investigation and Comparison With Healthy Siblings and Healthy Peers

Blood ◽  
2013 ◽  
Vol 122 (21) ◽  
pp. 4773-4773
Author(s):  
Neuner Bruno ◽  
Sylvia von Mackensen ◽  
Susan Halimeh ◽  
Susanne Holzhauer ◽  
Robert Klamroth ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Well Being ◽  
Haemophilia A ◽  
Healthy Controls ◽  
Bleeding Disorders ◽  
Health Related Quality ◽  
Healthy Siblings ◽  
Related Quality ◽  
Health Related

Background Hereditary bleeding disorders (HBD) affect children from birth during their life course. Medical treatment and the overall prognosis of children with HBD have significantly progressed. But even in patients cared for in specialized treatment centers it remains unclear whether survival till adulthood goes along with health-related quality of life [Hr-QoL] comparable to other patients groups respectively comparable to population children. Therefore aim of the present study was to assess self- as well as parents/proxies reported Hr-QoL in children and adolescents with HBD and to compare the results with findings from children affected by another chronic medical condition respectively with healthy siblings and peers. Methods 91 patients with HBD (thrombosis / deep venous thrombosis, DVT, respectively Haemophilia A and B) aged 8 to 16 years from 6 Hemophilia study centers were investigated regarding Hr-QoL. Hr-QoL was assessed in patients and parents/proxies with the generic KINDL-R questionnaire exploring overall well-being and 6 sub-dimensions (physical well-being, psychological well-being, self-esteem, family-related well-being, friend-related well-being, and school-related well-being). Findings were compared with 70 children with stroke / TIA respectively with healthy controls (45 healthy siblings and 106 healthy peers). Results Overall well-being in children with thrombosis / DVT (77.6 ± 9.7 points) was comparable to healthy controls but in children with Haemophilia A or B (76.0 ± 9.6) lower compared with healthy peers (80.2 ± 9.7, p = 0.005). No differences occurred between healthy controls and children with stroke/TIA (74.2 ± 10.3). In children with HBD none of the KINDL-R sub-dimensions showed values below healthy siblings. Two KINDL-R sub-dimensions showed lower values compared with healthy peers. Parents/proxies rated the Hr-QoL of their children with HBD similar to their healthy children. The internal consistency of overall well-being in all study subgroups was acceptable (> 0.7) but showed poor results (< 0.5) in two KINDL-R sub-dimensions. Discussion The application of a generic Hr-QoL questionnaire in a sample of children and adults with HBD seems feasible. Their Hr-QoL seems comparable to their siblings but below their healthy peers. Disclosures: Halimeh: Octapharma AG: Investigator Other, Research Funding.

Effects of MyBFF@school Intervention in Health-related Quality of Life among Overweight and Obese Primary School Children

2019 ◽  
Author(s):  
Zahari Ishak ◽  
Suet Fin Low ◽  
Wan Abdul Hakim Wan Ibrahim ◽  
Abqariyah Yahya ◽  
Fuziah Md. Zain ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Primary School ◽  
School Children ◽  
Well Being ◽  
School Functioning ◽  
Primary School Children ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

<p>Obesity has been shown to impact the health-related quality of life (HRQOL) among children. This study aimed to determine the effectiveness of MyBFF@school program on HRQOL among overweight and obese primary school children in Malaysia. KINDL<sup>R</sup> Questionnaire was used to collect data on their HRQOL before and after the program. ANCOVA was used to analyse the comparison between intervention and control group after 6 months. There are significant effect on family functioning, F(2,1103)=7.452, p<0.05 and school functioning, F(1,1117)=7.103, p<0.05 after the intervention. Effects can also be seen on physical well-being, emotional well-being and friends functioning. The program is effective in improving the HRQOL significantly in two dimensions namely the family and school functioning. In order to achieve greater overall success,social support should be an integral part of the program and stigma on obesity should be managed and reduced by including normal-weight children in the program.</p>

Features and methods of assessing health-related quality of life and cognitive functions in patients with glial tumors

2020 ◽  
pp. 47-56
Author(s):  
Vera Arsenyeva ◽  
Boris Martynov ◽  
Gennadiy Bulyshchenko ◽  
Dmitriy Svistov ◽  
Boris Gaydar ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cognitive Functions ◽  
Well Being ◽  
Health Related Quality ◽  
Number Of Patients ◽  
Related Quality ◽  
Health Related ◽  
Eortc Qlq ◽  
Patients With Epilepsy

Gliomas make up about 8 cases per 100,000 population and the number of patients with this disease is only increasing. There can be not only various types of neurological deficits among the symptoms, but also personal and emotional changes, that seriously affects the quality of life. The modern model of health care includes not only recovery of the patient’s physical functions, but also his or her psychosocial well-being. In particular, the assessment and study of the characteristics of health-related quality of life, as well as cognitive functions in patients with gliomas, is increasingly recognized as an important criterion when considering the effectiveness of treatment. To date, the features of health related quality of life and cognitive functions of patients with epilepsy and acute cerebral circulation disorders have been studied sufficiently, and, as a result, techniques have been developed that accurately assess the QOL and CF in patients with these diseases. These are QOLIE-31 and QOLIE-AD-48 questionnaires for patients with epilepsy. This is the National Institutes of Health Stroke Scale (NIHSS), Orgogozo stroke scale (OSS), World Federation of Neurological Surgeons (WFNS) scale for the clinical assessment of subarachnoid hemorrhage (SAH) for patients with acute cerebrovascular accident. At the same time, there are no generally accepted methods for assessing quality of life and neurocognitive functions that are sensitive to changes in the condition of patients with gliomas in the early postoperative period by the time of discharge from the hospital. As a result, there is no systematic information on the dynamics of the quality of life of such patients, their neurocognitive functioning. The purpose of this article was to study the literature on QOL and CF in patients affected by neurological and neurosurgical disorders for the further selection of optimal methods for assessing dynamics of the condition of patients with glial brain tumors before and after surgery. At the moment, such requirements are only partially met by the EORTC QLQ-C30 questionnaire and its application EORTC QLQ-BN20.

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