Quality of life in children with Prader Willi Syndrome: Parent and child reports

Quality of Life and Self-Esteem for Children With Urinary Urge Incontinence and Voiding Postponement

Parental reports of health-related quality of life in greek children with neurofibromatosis type 1

Health Related Quality of Life for Monosymptomatic Enuretic Children and Their Mothers

One of the problem in thalassemia children is poor quality of life. It is assessed through 4 functions, namely physical, emotional, social, and school functions. Many factors affect the quality of life in thalassemia patients. This study is aimed to know the relationship between educational level and knowledge of parents, with the quality of life in thalassemia children. A cross-sectional study with 54 subjects with thalassemia and 54 pairs of parents. Subjects who met the inclusion criteria and did not meet the exclusion criteria were taken by the consecutive sampling method. Data collection technique was done by conducting interviews based on characteristic data questionnaires, parental knowledge questionnaires, and quality of life questionnaires using PedsQL 4.0 Core Scales. We analised the data by Spearman correlation test and Pearson correlation test. Maternal’s educational level has a significant correlation to the quality of life in children with thalassemia with moderate correlation strength on spearman test (r = 0,410; p = 0,002). Father’s educational level has a significant correlation to the quality of life in the children with thalassemia with a weak correlation strength (r = 0.359; p = 0.008) on the spearman test. Maternal’s level of knowledge have significant correlation to the quality of life in children with thalassemia with medium correlation strength (r = 0,404; p = 0,002) on spearman test. Father’s level of knowledge have significant correlation to quality of life in children with thalassemia with weak correlation strength (r = 0,335; p = 0,013) on the spearman test. Multivariate test found that most factors affecting the quality of life of children with thalassemia is the level of knowledge of mothers with p = 0.014 and OR = 1.179. There is a significant correlation between the level of education and knowledge of parents on the quality of life of major thalassemia children.

Prader-Willi syndrome (PWS) increases the risk of obstructive sleep apnea (OSA) due to obesity, hypotonia, and abnormal ventilatory responses. We evaluated post-adenotonsillectomy complications, polysomnography changes, and quality of life in children with OSA and PWS. Systematic review and meta-analysis. We conducted a systematic review and meta-analysis by searching PubMed, Embase, Cochrane, Web of Science, and Scopus. Two researchers independently reviewed studies about adenotonsillectomy for OSA in patients <21 years with PWS. We extracted study design, patient numbers, age, complications, polysomnography, and quality of life. We pooled postoperative changes in apnea hypopnea index (AHI) for meta-analysis. We applied Methodological Index for Nonrandomized Studies (MINORS) criteria to assess study quality. The initial search yielded 169 studies. We included 68 patients from eight studies with moderate to high risk of bias. Six studies reported on complications and 12 of 51 patients (24%) had at least one. Velopharyngeal insufficiency was the most commonly reported complication (7/51, 14%). We included seven studies in meta-analysis. Mean postoperative improvement in AHI was 7.7 (95% CI: 4.9-10.5). Postoperatively 20% (95% CI: 3%-43%) had resolution of OSA with AHI < 1.5 while 67% (95% CI: 50%-82%) had improvement from severe/moderate OSA to mild/resolved (AHI < 5). Two studies evaluated quality of life and demonstrated improvement. Children with PWS undergoing adenotonsillectomy for OSA have a substantial risk of postoperative complications that may require additional interventions, especially velopharyngeal insufficiency. Despite improvements in polysomnography and quality of life, many patients had residual OSA. This information can be used to counsel families when considering OSA treatment options. Laryngoscope, 131:898-906, 2021.

Little is known about health-related quality of life in children with sickle cell disease aged 0-7 years old living in an European country. In order to improve quality of life...

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Previous research suggests that children dealing with the asthma are at a greater risk for experiencing psychological maladjustment than children without asthma. Research also suggests that coping is a factor in psychological adaptation to chronic stressors such as physical illnesses. The question as to how coping relates to psychological functioning and quality of life in the paediatric asthma population has not yet been answered. The objective of the current study was to examine the relationships among coping, psychological functioning and quality of life in children diagnosed with asthma and to investigate the relationship that mothers' quality of life has with these variables. Forty-seven youths (aged 8-15 years) diagnosed with asthma completed measures of coping with asthma and quality of life. Each youth's mother completed measures of her child's coping, psychological functioning and her own quality of life. Mothers and children with asthma both reported that children used significantly more approach coping than avoidant coping when dealing with asthma. Three regression analyses indicated that avoidant coping negatively predicted psychological functioning, child's quality of life and mother's quality of life. Bivariate analyses also indicated a positive relationship between child's quality of life and mother's quality of life. Results indicate that, in children with asthma, coping style plays an important role in the child's psychological functioning and quality of life and mother's quality of life. Therefore, it is recommended that type of coping be assessed when developing comprehensive treatment plans for children with asthma. Further research is needed to determine the efficacy of focused coping interventions in improving quality of life and psychological functioning in children with asthma.

&lt;sec&gt;&lt;st&gt;Background&lt;/st&gt; There is little consistency in the use of instruments for measuring self-reported quality of life (QoL) in young children. This study aimed to analyse self-reported QoL in children aged &lt;12 years with a chronic health condition of perinatal origin, and to examine the agreement between self- and proxy-reports for these children. &lt;/sec&gt; &lt;sec&gt;&lt;st&gt;Methods&lt;/st&gt; We used systematic review methods for literature searches (MEDLINE, EMBASE, Web of Science, PsychINFO), development of the data extraction protocol and the review process. Original studies were included if they: (1) assessed QoL of children with a distinct chronic health condition of perinatal origin, i.e. either a congenital condition or anomaly, or a condition resulting from events during pregnancy or in the neonatal period; (2) had self-reported data on children aged &lt;12 years; (3) used validated generic or condition-specific QoL instruments; (4) published in English between January 1989 and June 2013. Each eligible study underwent a detailed review by two independent reviewers who extracted data on study design, objective, sample characteristics, QoL assessment instrument, statistical techniques used and the results. Study quality assessment was conducted by the reviewers who evaluated recruitment (avoidance of selection and non-response bias), study design (course of measurement, informants and type of controls), QoL assessment (whether validated instruments were used), and the statistical analyses (adjustment for confounders. Due to the varied QoL measurements and summary measures, the results were synthesised narratively. &lt;/sec&gt; &lt;sec&gt;&lt;st&gt;Results&lt;/st&gt; From 403 full-text papers assessed for eligibility, 50 studies underwent detailed review and 37 were included in a narrative synthesis. Children’s self-reported QoL was assessed using a variety of generic and/or condition-specific instruments, with the Paediatric Quality of Life Inventory being the most frequently used (25%, nine studies). Irrespective of the condition or the instrument used, children often reported QoL similar to the reference population, except for lower scores in the physical functioning/health domain. There were differences between younger and older age groups by QoL domain. The child’s perception of QoL differed from that of their parents, in particular for subjective domains such as emotional functioning, and these differences were age-related. &lt;/sec&gt; &lt;sec&gt;&lt;st&gt;Conclusion&lt;/st&gt; This review suggests that young children with perinatal conditions often have similar self-reported QoL compared with age-matched controls. As their perception of QoL frequently differs from that of their parents, both child and parent perspectives are essential to understand the impact of the condition on a child’s QoL and on the family as a whole. &lt;/sec&gt; &lt;sec&gt;&lt;st&gt;Acknowledgments&lt;/st&gt; This abstract was first presented as a poster at Perinatal Medicine 2014, 9–11 June 2014, Harrogate International Centre, Harrogate, UK, and published as: Rankin J, Jardine J, Glinianaia SV, McConachie H, Embleton ND. Self-reported quality of life in children aged less than 12 years with chronic health conditions of perinatal origin: a systematic review. Archives of Disease in Childhood Fetal and Neonatal Ed. 99(Suppl 1):A39. 2014. &lt;/sec&gt;

Migraine is an episodic disease characterized by a throbbing and generally unilateral headache, often accompanied by nausea, vomiting and light and sound sensitivity. Migraine is known to affect one's quality of life; not only the person with migraine but also his/her family and social environment are affected by this condition. Our study aimed to evaluate the effects of maternal migraine on children's quality of life. The patient group comprised 70 mothers with migraine diagnoses and their 111 healthy children, while 50 healthy mothers and their 86 children were included in this study as the control group. The Visual Analog Scale (VAS), Migraine Disability Assessment Scale, Beck Depression Index (BDI) and Beck Anxiety Index (BAI) were used for evaluation of mothers; 3 to 7-year old KINDL and 7- to 17-year-old KINDL-R Quality of Life Scales were used to evaluate the quality of life of children. The SPSS 21.0 program was used for statistical analysis and p<0.05 was assumed to be statistically significant. The mean age of the migraine group was 37.09±6.94years, and the mean age of the control group was 38.2±4.5. Symptoms of depression and anxiety were more frequently found in subjects with migraine (p<0.05). In comparison with the control group: 3 to 7-year old KINDL total scores, self-esteem and school subscales, 7- to 17-year-old KINDL total scores, self-esteem and the social relationships subscale scores were lower in migraine group. It was found to be significant that VAS, BDI and BAI scores of the mothers were negatively correlated with the children's quality of life. Our study concluded that the presence of migraine-type headache in mothers worsen the relations in school, self-esteem and quality of life in younger children and social relations, relations in school and quality of life in older children. The maternal age, disease severity, and anxiety and depression symptoms were shown to predict the quality of life in children. Performing preventive interventions by individually assessing bio-psycho-social elements for the treatment of mothers with migraine will preserve other family member's and especially children's quality of life.

Objective: Prader–Willi (PWS; OMIM#176270) syndrome is a clinically distinct genetic disorder, caused by an abnormality in the 15q11-q13 region, referred to as the critical region. One of the most popular concepts existing in modern sciences, not only within psychology, but also in the aspect of all sciences that are related to human life and its course, is the quality of life (QoL). Though it is known that health-related quality of life in children with PWS can be reduced, less is understood about the impact on the family. We aimed to identify factors related to the quality of life of children with PWS and the impact of the disease on family functioning. Methods: A cross-sectional questionnaire survey. The subjects were 46 parents of children with PWS. The Computer Assisted Self-Interviewing (CASI) method was used; the Paediatric Quality of Life Inventory and the PedsQL Family Impact Module. Results: The PedsQL mean score was 49.0; (min–max: 5.6–90.8; SD = 16.8), with the highest scores in the Emotional Functioning (EF) (EF; 55.9; min–max: 5.0–100.0; SD = 22.0), and the lowest in the Social Functioning (SF) (SF; 42.7; min–max: 5.0–85.0; SD = 18.7) 56.4 (SD ± 14.7). The child’s age does not affect the quality of life, there were no statistically significant (p > 0.05). families have difficulties in performing daily activities (total score 27.6; SD 16.7), support family functioning (total score 28.9; SD 18.8) and effects physical domain (total score 27.7; SD 15.7). Conclusion: Research on the QoL of patients with PWS and their families is very important in order to assess the QoL, but also to provide the perspective of an active change in the perspective of a better treatment process, rehabilitation and communication in society.

Quality of life in children with epilepsy: How does it compare with the quality of life in typical children and children with cerebral palsy?

Only a few studies have assessed the quality of life in children with tracheostomies. This study aimed to evaluate the quality of life and the factors influencing it in these children. This cross-sectional, two-centre study was conducted on paediatric patients living in the community with a tracheostomy by using the Pediatric Quality of Life Inventory. Clinical and demographic information of patients, as well as parents' socioeconomic factors, were obtained. A total of 53 patients met our inclusion criteria, and their parents agreed to participate. The mean age of patients was 6.85 years, and 21 patients were ventilator-dependent. The total paediatric health-related quality of life score was 59.28, and the family impact score was 68.49. In non-ventilator-dependent patients, multivariate analyses indicated that social functioning and health-related quality of life were negatively affected by the duration of tracheostomy. The Quality of Life of ventilator-dependent patients was influenced by care visits and the presence of pulmonary co-morbidities. Children with tracheostomies have a lower quality of life than healthy children do. Routine care visits by a respiratory therapist and nurses yielded significantly improved quality of life in ventilator-dependent children.

Quality of life and visual function in children with glaucoma in Spain

Evaluation of sleep habits, sleep chronotype, and quality of life in children with drug-resistant epilepsy in Turkey