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.

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.

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.

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.

scholarly journals Impact of Depression and Anxiety on Dimensions of Health-Related Quality of Life in Subjects with Parkinson’s Disease Enrolled in an Association of Patients

2021 ◽  
Vol 11 (6) ◽  
pp. 771
Author(s):  
Fany Chuquilín-Arista ◽  
Tania Álvarez-Avellón ◽  
Manuel Menéndez-González
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Psychiatric Symptoms ◽  
Well Being ◽  
Depression And Anxiety ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

Parkinson’s disease (PD) is a complex disorder characterized by a wide spectrum of symptoms. Depression and anxiety are common manifestations in PD and may be determinants of health-related quality of life (HRQoL). The objective of this study is to determine the association of depression and anxiety with the dimensions of HRQoL in subjects with PD enrolled in an association of patients. Ninety-five community-based patients with PD diagnosis at different disease stages were studied. HRQoL was assessed using the Parkinson’s Disease Questionnaire (PDQ-39); depression and anxiety were assessed using the Beck Depression Inventory (BDI-II) and the State-Trait Anxiety Inventory (STAI), respectively. Our results showed that depression and anxiety were negatively associated with HRQoL measured by PDSI. Higher motor dysfunction measured by Hoehn and Yahr (H&Y) staging was also associated with worse HRQoL. Depression was the most influential variable in the model. All PDQ-39 dimensions except social support and bodily discomfort were associated with depression. Anxiety was associated with the emotional well-being and bodily discomfort dimensions. These results suggest that physicians should pay attention to the presence of psychiatric symptoms and treat them appropriately.

scholarly journals Relationship between Sedentary Time, Physical Activity, and Health-Related Quality of Life in Spanish Children

2021 ◽  
Vol 18 (5) ◽  
pp. 2702
Author(s):  
Manuel Ávila-García ◽  
María Esojo-Rivas ◽  
Emilio Villa-González ◽  
Pablo Tercedor ◽  
Francisco Javier Huertas-Delgado
Keyword(s):  
Quality Of Life ◽  
Physical Activity ◽  
Sedentary Time ◽  
Vigorous Physical Activity ◽  
Well Being ◽  
Self Esteem ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

Higher sedentary time and lower physical activity (PA) are associated with a poor health-related quality of life (HRQoL) in children. The aims of this study were: (1) to analyze the sedentary time, objectively measured PA levels (light, moderate, vigorous, and moderate-to-vigorous physical activity (MVPA)), and HRQoL dimensions (physical well-being, emotional well-being, self-esteem, family, friends, school, and total score) in children; and (2) to examine the association between sedentary time, PA levels, and HRQoL in children separately by sex. A total of 459 children (8.4 ± 0.4 years old, 50.54% males) from 15 schools in Granada (Spain) participated in the study. A tri-axial accelerometer was used to measure PA levels in the children for 7 consecutive days. The Revidierter KINDer Lebensqualitätsfragebogen (KINDL-R) questionnaire was used to determine the children’s HRQoL dimensions. The results showed that males presented more minutes engaged in MVPA than females. Both sedentary time and PA levels were associated with self-esteem and total score (all p < 0.05). In males, moderate and vigorous PA levels were associated with higher HRQoL, whereas light PA was associated with higher HRQoL in females. Future studies should take into account the use of activities with difference intensities in order to increase HRQoL in males and females.

scholarly journals The relationship of self-reported and device-based measures of physical activity and health-related quality of life in adolescents

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Kathrin Wunsch ◽  
Claudio R. Nigg ◽  
Susanne Weyland ◽  
Darko Jekauc ◽  
Claudia Niessner ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Physical Activity ◽  
School Environment ◽  
Protective Factor ◽  
Well Being ◽  
Health Related Quality ◽  
Psychological Well Being ◽  
Related Quality ◽  
Health Related

Abstract Background Physical activity (PA) has beneficial effects on health and health-related quality of life (HRQoL), which is a protective factor of illness and mortality. The purpose of this examination was to investigate if self-reported and device-based measures of PA were related to HRQoL in adolescents. Methods Participants (N = 1565; 54.3% female; Mage = 14.37 years, SDage = 1.99) were recruited from 167 sample points across Germany. Adolescents self-reported their PA, supplemented by a 1-week examination of device-based PA using accelerometry. Additionally, they completed the multidimensional KIDSCREEN-27 to assess HRQoL. Results Results showed that self-reported PA was correlated with overall HRQoL, Physical Well-Being, Psychological Well-Being, Social Support & Peers, and School Environment, whereas device-based PA was only correlated with Physical as well as Psychological Well-Being. Further, self-reported PA significantly predicted all facets of HRQoL except for Autonomy and Parent Relations, whereas device-based PA solely heightened the amount of explained variance in the Physical Well-Being subscale. Conclusions Findings demonstrate the importance of self-reported PA as it is related to almost all facets of HRQoL. Both measures of PA are not congruent in their relationship with HRQoL and thus implications have to be carefully considered. Future studies should investigate the direct effect of PA on HRQoL and health in a longitudinal approach to account for the causality of effects.

Quality of Life before and after Lung Transplantation in Patients with Emphysema versus other Indications

2001 ◽  
Vol 89 (3) ◽  
pp. 707-717 ◽  
Author(s):  
E. M. TenVergert ◽  
K. M. Vermeulen ◽  
A. Geertsma ◽  
P. J. van Enckevort ◽  
W. J. de Boer ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Lung Transplantation ◽  
Nottingham Health Profile ◽  
Well Being ◽  
Health Profile ◽  
Health Related Quality ◽  
Before And After ◽  
Related Quality ◽  
Health Related

Whether lung transplantation improves Health-related Quality of Life in patients with emphysema and other end-stage lung diseases before and after lung transplantation was examined. Berween 1992 and 1999, 23 patients with emphysema and 19 patients with other indications completed self-administered questionnaires before lung transplantation, and at 4, 7, 13, and 25 mo. after transplantation. The questionnaire included the Nottingham Health Profile, the State-Trait Anxiety Inventory, the Self-rating Depression Scale, the Index of Well-being, the self-report Karnofsky Index, and four respiratory-specific questions. Neither before nor after transplantation were significant differences found on most dimensions of Health-related Quality of Life between patients with emphysema and other indications. Before transplantation, both groups report major restrictions on the dimensions Energy and Mobility of the Nottingham Health Profile, low experienced well-being, depressive symptoms, and high dyspnea. About 4 mo. after transplantation, most Health-related Quality of Life measures improved significantly in both groups. These improvements were maintained in the following 21 mo.

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