Mean PedsQL Scores Research Articles

QOL-15. PAEDIATRIC LOW-GRADE GLIOMA (PLGG): A LIFELONG DISEASE THAT BEGINS IN CHILDHOOD. EVALUATION AND PROGNOSTICATION OF LONG-TERM PLGG SURVIVOR FUNCTIONAL AND QUALITY OF LIFE OUTCOMES

Abstract BACKGROUND For many patients, PLGG has a chronic disease course with potential for multiple and significant functional deficits and decreased Quality-of-Life (QOL). However, there have been limited large-cohort evaluations or prognostication studies of QOL & functional outcomes. AIMS 1. Large-cohort analysis of long-term PLGG survivor functional & QOL outcomes: combining clinical follow-up assessment with survivor-reported QOL & function. 2. Evaluation of prognostic associations between PLGG variables & functional/QOL outcomes. METHODS Demographic, tumour & treatment factors of PLGG patients diagnosed 1980-2021 at Great Ormond Street Hospital, UK, were retrospectively collected & evaluated prognostically with functional outcomes from last clinical follow-up.Cohort long-term survivors completed prospective QOL(PedsQl Core) & function(PESAT-PT) questionnaires.PedsQL scores were evaluated prognostically with patient/tumour/treatment factors using multivariate logistic regression.PedsQL scores were compared with healthy (N=649) & chronically-ill (N=137) reference populations. RESULTS PLGG cohort (N=814) OS was 94.3%,PFS 76% & median treatments 1 (0-21) at median follow-up 8 years. 42% had 1 functional deficit at last clinical follow-up. Diagnostic age, tumour location, surgical resection, & receipt chemo/radiotherapy were independently associated with functional outcomes. 122 long-term survivors completed prospective questionnaires at median follow-up 21 years. 87% reported dysfunction: physical 60%,visual 50%,neurocognitive 49%,social 25%, endocrine 23%,travel 21%,employment 18%,& hearing 11%. Mean PedsQl scores:Physical 82(0-100), Psychosocial 73(13-100), Total 76(9-100). PLGG survivors had significantly lower mean Total, Physical & Psychosocial PedsQl scores than healthy controls (p0.0001,p0.0003,p0.0001), but comparable to people with chronic illness (p0.60,p0.14,p0.21). No correlation identified between PedsQl scores & number of impaired functional domains. Favourable Total PedsQl scores were associated with surgical resection(OR-5.94,p0.02) & fewer treatment interventions on multivariate analysis(OR-2.8,p0.0005). Adverse PedsQl scores were associated with NF1 (OR-11.82,p0.04), BRAF-V600E mutation(OR-18.55,p0.04), OPGs(OR-12.1,p0.01), & seizures(OR-18.93,p<0.0001). CONCLUSIONS Prognostication of heterogeneous PLGG survivor functional and QOL outcomes is complex but possible, without clear correlation between QOL and functional outcomes. For many, PLGG is a lifelong disease that begins in childhood.

Changes in health-related quality of life during transition to adult healthcare: an international prospective cohort study

ObjectiveTo study changes in health-related quality of life (HRQoL) in adolescents and young adults (AYAs) with chronic medical conditions across the transfer to adult healthcare and associations of HRQoL with...

Quality of life of pediatric patients with craniopharyngioma: A retrospective series from a low-middle-income country with more than 4 years follow-up.

Craniopharyngiomas (CPs) are rare, low-grade tumors characterized by a range of debilitating symptoms. Most of the existing literature reports postoperative outcomes of the different treatment modalities of childhood CP. However, few studies have reported the impact of these different treatment methods on the quality of life (QoL) of survivors of childhood CP. Therefore, we aim to assess the correlation between different surgical modalities on the QoL of patients with childhood CP from a lower-middle-income country. Twenty-nine survivors who underwent treatment for CP were included in the study. The selected patients had either been managed with complete resection, debulking, or placement of an Ommaya reservoir. QoL was assessed by the pediatric quality of life (PedsQL) questionnaire. The effect of the different treatment modalities on the QoL was assessed. Mean follow-up was 4.4 ± 2.19 years. The type of surgery was significantly related to the mean PedsQL scores for the total score as well as each of the individual domain scores (P < 0.001). Complete resection of the tumor resulted in the lowest mean (standard deviation) PedsQL total score of 56.6 ± 7.12 compared to the Ommaya reservoir with biopsy (83.3 ± 5.69) and debulking (93.8 ± 3.37) (P < 0.001). There was a significant effect of the type of surgical treatment on the QoL of the survivors of childhood CP. It is important to consider the long-term outcomes in addition to immediate postoperative outcomes when deciding on a treatment strategy while managing children with CP.

The effect of education given to Turkish adolescents with Familial Mediterranean fever on anxiety, depression, and quality of life.

To examine the effects of individual education given to Turkish adolescents with Familial Mediterranean fever (FMF) on anxiety, depression, and quality of life. The randomized controlled experimental study was performed on 70 adolescents aged 12-18years who were diagnosed as having FMF between October 2021 and April 2022 in Turkey. The disease management education was offered individually to adolescents in the intervention group with a booklet entitled "FMF is under my control;" no intervention was applied to adolescents in the control group. The training booklet was prepared by the researchers in a multidisciplinary team and was finalized by taking expert opinions. In the data collection process, a personal information form, the State-Trait Anxiety Inventory for Children (STAI-CH), the children's depression inventory (CDI), and the Pediatric Quality of Life Inventory (PedsQL) were used. After applying the scales specified in the pretest, individual training was given and the posttest was performed 2months later using the same scales. After the education, there was a statistically significant decrease in the mean CDI score of the intervention group (p < 0.05), whereas there were statistically significant increases in mean scores obtained on PedsQL and its sub-scales (p < 0.05). However, the decrease in the mean STAI-CH score of the intervention group was not statistically significant (p > 0.05). There was no statistically significant difference in the mean STAI-CH, CDI, and PedsQL scores of the control group after the education (p > 0.05). Conclusion: The effectiveness of the individual education program for adolescents with FMF in improving quality of life and reducing levels of depression within the scope of disease management has been confirmed. It is recommended that all health professionals working with children with FMF regularly provide individual or group-planned education programs. What is Known: • The unpredictability of FMF attacks has a very negative effect on adolescents. • Individual education programs on FMF focus on children with a holistic approach. What is New: • To the best of our knowledge, this study is the first study to evaluate disease management education given to adolescents with FMF. • This is a pioneering study of the use of nurses in the education of adolescents with FMF and in fulfilling their educational roles.

Is psychological resilience associated with changes in youth sport participants’ health-related quality of life during the COVID-19 pandemic?

Objectives: This study investigated the quality of life of youth sport participants over the COVID-19 pandemic as moderated by psychological resilience. Methods: Participants included 93 high school sport participants (53.76% female, mean age = 15.59 ± 0.74) in a three-year longitudinal cohort study (SHRed Concussions) who completed the Connor–Davidson Resilience Scale (CD-RISC), Pediatric Quality of Life Scale (PedsQL), and Strengths and Difficulties Questionnaire (SDQ) at Year 1 (pre-pandemic, 2019–2020) and Year 2 (pandemic, 2020–2021). Change in quality of life and mental health symptoms from Year 1 to Year 2 was examined using paired t-tests and Year 1 resilience was examined as a predictor of Year 2 quality of life and mental health symptoms using linear regression. Results: Among participants with Year 1 scores before the pandemic onset, mean PedsQL (n = 74, t = −0.26 [−2.63, 2.03], p = 0.80) and SDQ (n = 74, t = 0.030 [−0.90, 0.93], p = 0.98) scores did not significantly change between Year 1 and Year 2. In unadjusted analyses, Year 1 CD-RISC scores were positively associated with predicted Year 2 PedsQL scores when Year 1 scores were controlled (β = 0.31 [0.0062, 0.61], ΔR 2 = 0.02) but not with residual change in SDQ scores (β = 0.035 [−0.11, 0.18], ΔR 2 = 0.001). Conclusions: Quality of life did not change significantly after the pandemic onset, and resilience was modestly protective.

Evaluation of Self-Efficacy and Health-Related Quality of Life in Pediatric-Onset Multiple Sclerosis Patients

Objective: To assess the self-efficacy level and health-related quality of life in pediatric-onset multiple sclerosis (POMS) patients. Material and Methods: A cross-sectional study was conducted between January-April 2022 at Hacettepe University Department of Pediatric Neurology using The Pediatric Rating of Chronic Illness Self-Efficacy (PRCISE) Scale and Pediatric Quality of Life Inventory (PedsQL). Results: Twenty-nine POMS patients with a median age of 16.4 years (F/M: 20/9) were included in the study. The mean PRCISE Scale score was 101.8±22.4 and the mean PedsQL score was 66.5±16.2. Both scores were lower than previously reported in the literature. Conclusion: Lower self-efficacy and HRQoL levels might be attributed to fatigue which is common in POMS. The impact of the COVID-19 pandemic on mental health and quality of life should be addressed in patients with POMS.

The Relationship Between Physical Activity Level And Quality of Life of Children with Autism Spectrum Disorder

Objective: The aim of this study is to determine the quality of life levels of children with Autism Spectrum Disorder and the relationship between quality of life and physical activity level. Materials and Methods: 28 children with a diagnosis of Autism Spectrum Disorder participated in the study. A sociodemographic form consisting of 25 questions about the child and parents, the " Pediatric Quality of Life Inventory- Parent Form " consisting of 23 questions to assess the quality of life of children and adolescents, and the "Physical Activity Scale for Children" consisting of 9 questions to determine the level of physical activity was administered to the participants. Results: 28 children with Autism Spectrum Disorder, including 8 girls and 20 boys, participated in the study. The mean PedsQL score of the children diagnosed with Autism Spectrum Disorder was found to be 49.87±19.08. Pearson Correlation analysis was performed to determine the relationship between children's physical activity level and quality of life. No statistically significant correlation was found between the PedsQL total score and the PAQ-C score (p&amp;gt;0.05). A statistically significant positive correlation was found between psychosocial health and PAQ-C, one of the sub-scores of PedsQL. (p&amp;lt;0.05) Conclusion: According to the findings; We can state that the psychosocial health of children with Autism Spectrum Disorder and the social function parameter among the sub-parameters are more negatively affected. There is no significant relationship between children's physical activity levels and quality of life, but there is a significant relationship between psychosocial quality of life and physical activity levels.

Effects of Enzyme Replacement Therapy on Quality of Life, Functional Independence and Aerobic Capacity in Children with Mucopolysaccharidosis

: The mucopolysaccharidosis (MPS) can lead to poor endurance and mobility, often associated with pain, restricted range of motion (ROM), low energy levels and fatigue, negatively affecting quality of life and activities of daily living. This study aimed to examine the impact of enzyme replacement therapy (ERT) on aerobic capacity, functional independence and quality of life in children with MPS and to determine the anxiety and depression levels of their caregivers. Study Design established in Cross sectional study. Twelve children aged 3 to 11 years were included in the study. The subjects were divided into two groups according to the use of ERT. Quality of life and functional independence were assessed using the Pediatric Quality of Life Inventory (PedsQL) and Functional Independence Measure for Children (WeeFIM). The 6-minute walk test (6MWT) and timed up and go test (TUG) were used to evaluate aerobic capacity. Anxiety and depression levels of parents were assessed using the Beck Anxiety Inventory (BAI) and Beck Depression Inventory (BDI), respectively. A total of 12 MPS patients 7 boys (58.3%) and 5 girls (41.7%) with a mean age of 5.58±2.67 years were included in the study.1 patient had MPS type I, 2 patients had MPS type III, 5 patients had MPS type IV, and 4 patients had MPS type VI. Six patients were receiving ERT. The children had a mean 6MWT score of 330.83±114.29, a mean TUG score of 14.24±5.71 sec, a mean PedsQL score of 46.83±14.03 and a mean WeeFIM score of 70.83±26.85. Their caregivers had a mean BAI score of 19.25±10.95 and a mean BDI score of 19.41±6.81. A significant difference was found between the children receiving ERT and those not receiving in the WeeFIM scores (P0.05). ERT did not change aerobic capacity and quality of children with MPS but increased their level of functional independence. Multisystem involvement in MPS children may affect anxiety and depression levels of their caregivers but ERT does not seem to have any effect on this psychosocial aspect.

Effects of Occupational Therapy via Telerehabilitation on Occupational Balance, Well-Being, Intrinsic Motivation and Quality of Life in Syrian Refugee Children in COVID-19 Lockdown: A Randomized Controlled Trial

We aimed to evaluate the effects of an occupational training program via telerehabilitation on well-being (WB), occupational balance (OB), intrinsic motivation (IM), and quality of life (QoL) in Syrian refugee children resettled in Turkey during the COVID-19 pandemic. This was a single-center, prospective, randomized, non-blinded trial in which children aged 13–15 years and attending a secondary school were recruited. OB, WB, IM, and QoL were evaluated via the OB Questionnaire (OBQ11), the Well-Star Scale (WSS), the IM Scale (IMS), and the Pediatric Quality of Life Inventory (PedsQL). The intervention group attended online occupational therapy classes. Online classes were carried out as five sessions per week, each session lasting 1 h, for 3 weeks. Questionnaires were performed at the outset of the study and following the training program. Overall, 52 refugee children were randomized into the intervention and control groups, each including 26 children. The mean OBQ11, WSS, IMS, and PedsQL scores significantly improved more in the intervention group than in the control group. This was the first study investigating the effects of a customized online training course on OB, WB, IM, and QoL in Syrian refugee children, also affected unfavorably by the COVID-19 lockdown. Our results showed significant improvements in all the study scales that we used to quantify the alterations in the aforementioned traits.

The impact of testosterone therapy on quality of life in adolescents with Duchenne muscular dystrophy

Duchenne muscular dystrophy (DMD) is the most common muscular dystrophy in childhood. It is associated with progressive muscle function decline and premature death. Long-term oral glucocorticoid use slows muscle weakness but is associated with several side effects including delayed puberty. This study assessed the impact of a 2-year incremental intramuscular testosterone regimen on quality of life (QoL) in a cohort of 15 adolescents with DMD. The Pediatric Quality of Life Inventory (PedsQL) Neuromuscular module was used to assess QoL and was completed by parent-child dyads. Semi-structured interviews were carried out to understand patient views on testosterone therapy. QoL scores increased in 10 of the 15 participants during treatment, with a mean total PedsQL score of 74.6 pre-treatment v 80.2 post treatment (p = 0.04). This was supported by comments in the semi-structured interviews. Parent-reported PedsQL scores were lower than their child's post treatment (p = 0.007). Testosterone therapy for pubertal induction was associated with an improvement in QoL and the observed physical changes during puberty played an important role. Low self-esteem was also a prevailing theme. This data supports the inclusion of testosterone therapy for pubertal induction as a Standard of Care.

Dietary patterns and health-related quality of life among Iranian adolescents.

Examining the associations of a-posteriori-defined dietary patterns and health-related quality of life (HRQOL) among Iranian adolescents. This cross-sectional study was conducted among 900 apparently healthy students (mean age 15.33years; 53.0% female) during 2020-21. The validated Persian version of self-report Pediatric Quality of Life Inventory™ Version 4.0 Generic Core Scales (PedsQL) for healthy adolescents was used in an online survey to assess HRQOL. Total, physical health, psychosocial health, emotional functioning, social functioning, and school functioning PedsQL scores were calculated, and impaired HRQOL was defined as > 1 standard deviation below the total population sample mean PedsQL scores. A validated food frequency questionnaire was used to assess dietary intakes during telephone interviews. Daily intakes of 20 predefined food groups were calculated and submitted to the principal component factor analysis to identify a-posteriori-defined dietary patterns. Three major dietary patterns labeled as Mediterranean, mixed, and unhealthy were identified, of which only the Mediterranean pattern characterized by high intakes of vegetables, fruits, olives, potatoes, eggs, nuts and legumes, pickles, low-fat dairy, fish, poultry, and vegetable oils was consistently associated with HRQOL. Controlling for covariates in the multivariable-adjusted binary logistic regression analysis, participants in the top tertile of Mediterranean pattern score were less likely to have impaired HRQOL than those in the bottom tertile (total: OR 0.25; physical health: OR 0.35; psychosocial health: OR 0.15; emotional functioning: OR 0.17; social functioning: OR 0.15; and school functioning: OR 0.18; all P < 0.010). Current findings indicate that an a-posteriori-defined Mediterranean-style dietary pattern is associated with better HRQOL among healthy Iranian adolescents.

Predictors of parental satisfaction with the pediatric ophthalmology care in a Brazilian hospital.

The purpose of this cross-sectional study was to assess the satisfaction of parents of visually impaired children with the pediatric ophthalmology care in a Brazilian hospital and to associate parental satisfaction with predictor variables. The study enrolled children with a binocular and monocular visual impairment aged between 4 and 17years from a single site in Brazil between June 2019 and May 2020. Parents or legal guardians answered the Brazilian version of the Pediatric Quality of Life InventoryTM (PedsQLTM 3.0) Healthcare Satisfaction Generic - Parents. Linear regression analysis was used to investigate the association between the PedsQL scores and predictor variables. The sample included 82 children and their respective parents. The mean PedsQL score was 90.3±6.6 (out of 100). In the univariate model, child female sex (p=0.056), child older age (p=0.078), better eye visual acuity (VA; p=0.016), and worse eye VA (p=0.008) were significantly associated with higher scores. The multivariate estimates identified the worse eye VA (p=0.034) as a predictor of parental satisfaction. In summary, parents' satisfaction with this pediatric ophthalmology care was high. Nevertheless, a continuous evaluation is warranted to keep up with parents' expectations and plan for possible improvements in clinical practice.

Psychiatric disorders, peer-victimization, and quality of life in girls with central precocious puberty

ObjectiveTo evaluate the psychiatric diagnoses, peer-victimization, quality of life, and emotional and behavioral status of girls with central precocious puberty (CPP). MethodsA total of 71 girls with CPP and 50 healthy controls participated in the study. All participants were evaluated using a semi-structured interview by a child and adolescent psychiatrist. To assess the peer-victimization, quality of life, depression levels, and emotional and behavioral status, the Olweus Bully/Victim Questionnaire, The Pediatric Quality of Life Inventory (PedsQL), the Child Depression Inventory (CDI) and Strengths and Difficulties Questionnaire (SDQ) was used in this study. ResultsAlthough the difference was not significant, the rate of being diagnosed with at least one psychiatric disorder was higher in CPP group (28%) than in control group (20%). The most common psychiatric disorder was social anxiety disorder (13%) for the CPP group. No significant difference was found between the CPP and the control groups in terms of mean CDI and PedsQL scores. When compared in terms of SDQ parameters, prosocial behavior scale scores were significantly higher in the CPP group than in the control group. Being a victim of bullying was found significantly more frequently in girls with CPP than among the healthy controls (28% vs. 12%). ConclusionDue to the high rates of being bullied, girls with CPP should be screened for peer-victimization. Long-term prospective studies are also necessary to further elucidate the psychological consequences of CPP on girls.

Validation of a Hearing-Related Quality-of-Life Questionnaire for Parents and Deaf or Hard-of-Hearing Infants and Toddlers.

To design and validate a hearing-related quality-of-life questionnaire targeted toward parents and deaf or hard-of-hearing infants and toddlers: the Hearing-Related Infant/Toddler and Parent Quality of Life (HIP-QL) questionnaire. Cross-sectional questionnaire and prospective instrument validation. Academic pediatric otolaryngology clinic. A 67-question questionnaire developed from constructs of a grounded theory analysis was administered to parents of 31 deaf or hard-of-hearing children and 14 typically hearing children. Questionnaire construct validity, reliability, and discriminant validity were tested. Based on exploratory factor analysis, a 32-item construct composed of developmentally appropriate questions was reduced to a 17-item construct with 4 domains addressing quality of life for both child (auditory/communication behavior, temperament) and parent (management, parent-directed factors). Internal consistency measures were appropriate (Cronbach's alpha = 0.65), and test-retest reliability was high (intraclass correlation coefficient = 0.73). Total HIP-QL scores correlated significantly with related total PedsQL scores (r = 0.57, P < .001). As predicted, parents of children who are deaf or hard of hearing reported significantly lower mean HIP-QL scores but not mean PedsQL scores. HIP-QL was more sensitive than PedsQL for predicting case versus control membership (86.7% vs 76.9%). Multivariable regression confirmed a negative relationship between severity of hearing loss and HIP-QL score after controlling for age, sex, income, and maternal education. This context-specific questionnaire is the first validated quality-of-life instrument for parents and deaf or hard-of-hearing infants and toddlers. Previously, parental stress and functional disability questionnaires were used as proxies; therefore, this questionnaire has the potential to serve as an important tool for patient- and caregiver-centered outcomes research.

Pediatric Quality of Life in Congenital Hypothyroidism: an Indonesian Study

Background and Objectives: Thyroxine is important for brain development. Improper hypothyroid treatment may lead to cognitive and motor impairment, thereby affecting the quality of life. We analyzed the correlation between age at first treatment, length of treatment, initial levothyroxine (LT4) dose, and serum levels of free thyroxine (fT4) and thyroid stimulating hormone (TSH) and pediatric quality of life in patients with congenital hypothyroidism (CH). Materials and Methods: This research was a cross-sectional study of 41 children with CH who consumed LT4 for at least 3 months during March 2019-December 2019. The quality of life was assessed from parents’ reports using the Pediatric Quality of Life Inventory (PedsQL) generic scale. Spearman correlation analysis was carried out, and statistical significance was set at p＜0.05. Results: A total of 17 of the 41 children were girls. The mean PedsQL scores in physical and psychosocial functioning were 78.12 (68.75-100) and 233.30 (215-251.67), respectively. Age at first treatment was correlated with physical functioning (r=-0.501, p＜0.05) and psychosocial functioning (r=-0.440, p＜0.05). The initial LT4 dose was negatively correlated with physical functioning (r=-0.568, p＜0.05) and psychosocial functioning (r=-0.482, p＜0.05). The length of treatment showed a positive correlation with physical functioning (r=0.776, p＜0.05) and psychosocial functioning (r= -0.852, p＜0.05). However, the serum fT4 and TSH levels were not correlated with quality of life in children with CH (p＞0.05). Conclusion: Age at first treatment, initial dose of LT4, and length of treatment were correlated with quality of life in children with CH.

Abstract 15375: Patients With Congenitally Corrected Transposition of the Great Arteries Following Anatomic Repair Are at Risk of Impaired Quality of Life

Introduction: Children with complex congenital heart disease (CHD) are at increased risk for neurodevelopmental impairments and reduced quality of life (QOL). Patients (pts) with congenitally corrected transposition of the great arteries (ccTGA) often undergo anatomic repair to make the left ventricle the systemic ventricle, with the goal of long term cardiac benefits. Understanding long-term outcomes and QOL may inform preoperative counseling and treatment strategies for ccTGA. Methods: We measured QOL using PedsQL generic and cardiac modules for pts following anatomic repair of ccTGA with Senning/Arterial Switch or Senning/Rastelli operations. Impaired QOL by the PedsQL is defined by total scores &lt;65.4 for parent report and &lt;69.7 for pt report (possible score 0-100). Scores were compared to healthy controls and to pts with other forms of CHD, previously described in existing literature. Risk analysis for QOL impairment was performed using univariate logistic regression. Results: Of 88 eligible pts, 56 (64%) returned surveys (29% female, median age 11.8 years). Respondents were more likely to have pre-operative arrhythmias or pacemaker implantation compared to non-respondents. Mean total PedsQL score was 72 + 19 for pt report and 75 + 18 for parent report; 22 of 56 (39%) pts had impaired QOL scores, compared to 20% impaired scores in pts with any type of CHD, previously described. Mean physical functioning score was 72 + 22 for pt report and 76 + 21 for parent report. Mean psychosocial summary score was 73 + 18 and 75 + 18 for pt and parent report, respectively. Communication was the lowest scored subscale of the Cardiac module by pt (63 + 26) and parent (66 + 31) report. The treatment II subscale addressing medication compliance was the highest scored subscale with scores of 90 + 8 for pts and 91 + 15 for parent, respectively. Longer cardiopulmonary bypass time (p = 0.01), surgical or catheter-based reintervention following hospital discharge (p = 0.02) and heart failure symptoms (p = 0.04) were associated with impaired QOL. Conclusions: After anatomic repair of ccTGA, pts are at risk of impaired QOL compared to healthy controls and to pts with a broad range of CHD. Indicators of more complex surgical and post-operative courses were associated with impaired QOL.

Health-related quality of life and scar satisfaction in a cohort of children operated on for sacrococcygeal teratoma

AimThe aims of this study were to evaluate health-related quality of life (HRQoL) in children with sacrococcygeal teratoma and to explore the effect of the scar on physical, emotional and behavioral aspects.MethodsA cohort of children operated on for sacrococcygeal teratoma between 2000 and 2013 at Lund University Hospital, Sweden, and their parents were interviewed. HRQoL was evaluated with PedsQL, and scar satisfaction was estimated through Patient Observer Scar Assessment Score (POSA).ResultsAll eligible children (n = 17) were included (100% response rate). Median age was 7.3 years (range 3.5–16.0). Mean total PedsQL score was 92.3 (range 72.0 to 99.0). Patients with comorbidity scored lower (87.5) than those without (95.0) (p < 0.05). Pain during sitting down was reported by two (20%) patients, and itching was reported by another two patients (20%) aged > 8 years. No children reported that they avoided situations due to the scar, and most (80% of children and 90% of parents) reported absent or only mild negative emotions when considering the scar.ConclusionChildren with sacrococcygeal teratoma had a good overall HRQoL, but comorbidity reduced the outcome. A few children reported scar-related impact on physical, behavioral and emotional aspects.

İşeme Bozukluğu Olan Çocuk Hastalarda Yaşam Kalitesi ve Etkileyen Faktörlerin Değerlendirilmesi

Objective: Health-related quality of life and its influencing factors in pediatric patients with voiding dysfunction and their parents was assessed. Method: The patients who were admitted with urinary incontinence for at least 6 months to the clinics of pediatrics and pediatric nephrology were enrolled in the study. The patients were divided into three group as daytime urinary incontinence (DUI), enuresis and both DUI and enuresis. The Pediatric Quality of Life InventoryTM (PedsQLTM) was administered to patients and mothers. Results: A total of 100 patients with voiding dysfunction aged from 5 years to 18 years (mean age: 8.8±2.6) were included in the study. The mean dysfunctional voiding symptom score was 15.5±6.6 in all groups and significantly higher in the group who experienced both DUI and NE (p&lt;0.001). No significant difference was observed in terms of mean PedsQL scores of the children and their parents between groups with urinary incontinence (65.5±16 and 58.4±13.5, respectively), but strong positive correlation was obtained (p&lt;0.001). The mean PedsQL score for the children aged from 8 years to 12 years was significantly lower than the scores for the children aged from 5 years to 7 years old (p&lt;0.05). The mean PedsQL score for the children aged from 13 years to 18 years was not different from the other age groups. Conclusions: The early diagnosis and treatment of patients aged from 8 years to 12 years who had the lowest PedsQL score is important. Additionally, the success in improvement of the quality of life of children with voiding dysfunction require cooperation with parents.

The construct validity of the Child Health Utility 9D-DK instrument

BackgroundRelative to their application with adults there is currently little information about the application of preference-based health-related quality of life (HRQL) instruments among populations of young people. The Child Health Utility 9D (CHU9D) is a paediatric-specific generic preference-based HRQL instrument, recently translated and linguistically validated into Danish (CHU9D-DK). The purpose of this study was to investigate the construct validity of the CHU9D-DK in a sample of Danish high school students.MethodsAll students attending a Danish High School were invited to participate in a web-based survey in January 2018 (N = 272). The survey included the CHU9D-DK, the young adult version of the Pediatric Quality of Life Inventory™ 4.0 Generic Core Scales (PedsQL), self-reported health status, presence/absence of disability/chronic diseases, life satisfaction, and socio-economic questions. CHU9D-DK utility scores were generated by employing the two scoring algorithms developed from adults in the UK and adolescents in Australia, respectively. Internal consistency, reliability and construct validity of the CHU9D-DK instrument were investigated.ResultsTwo hundred and twenty-eight (84%) students consented to participate and completed the survey. The mean ± (standard deviation) values of the CHU9D-DK utilities were 0.84 (0.11) when the UK adult algorithm was applied and 0.70 (0.22), when the Australian adolescent algorithm was applied. The mean PedsQL score was 82.32 (13.14). The CHU9D-DK showed good internal consistency reliability (Cronbach’s alpha = 0.803). Higher levels of health status and life satisfaction were significantly associated with higher CHU9D-DK utility scores regardless of which scoring algorithm was applied (p-values < 0.001). Students living with a disability/chronic disease exhibited significantly lower utility scores relative to their healthy peers (p-values < 0.05). Higher socio-economic status (approximated by financial situation and frequency of family vacations) was also associated with higher utility scores (p-values < 0.005).ConclusionThe CHU9D-DK demonstrated good psychometric performance overall and shows potential as a valid and reliable instrument for assessing the HRQL of Danish young people.Trial registrationClinicalTrials.gov identifier: NCT03391999, Registered 15 October 2017.

Association Between Health-Related Quality of Life and Motor Function in Ambulant and Nonambulant Duchenne Muscular Dystrophy Patients.

This cross-sectional study assessed health-related quality of life (HRQOL) in ambulant and nonambulant patients with Duchenne muscular dystrophy, and explored the association between health-related quality of life and clinically assessed motor function. The Pediatric Quality of Life Inventory (PedsQL) Generic Core Scale and PedsQL Neuromuscular module were completed by 34 parent-child dyads. Association between PedsQL scores and overall motor abilities and the transfers and standing posture domain measured by the Motor Function Measure were examined. Child self-reported and parent proxy-reported mean PedsQL scores for children with Duchenne muscular dystrophy were lower than those for healthy children for the physical and psychosocial health-related quality of life. Fifty-six percent of patients reported clinically impaired psychosocial health-related quality of life scores. Several aspects of the generic and disease-specific health-related quality of life in patients with Duchenne muscular dystrophy were positively associated to overall motor function and transfers and standing posture domain. Associations remained stable when adjusted for age and corticosteroid use. The Motor Function Measure is clinically meaningful in the context of a patient's day-to-day life.