QOL In Children Research Articles

QUALITY OF LIFE IN CHILDREN WITH CRONIC KIDNEY DISEASE UNDERGOING RENAL REPLACEMENT THERAPY; REVIEW

Introduction: Chronic Kidney Disease (CKD) in children will have an impact on the quality of life in chidren, to be able to continue the growth and development of children with ESRD, renal replacement therapy, dialysis, end renal transplant, is needed. Purpose: To identify in the literature studie that evaluate the quality of life in children with CKD undergoing renal replacement therapy end validated instruments in Pediatrics. Method: review of the literature with searches conducted in the following database: Medline, Pubmed, Proques, CINAHL and Cochrane Library databases were searched from 2010 to 2020 in quality of life in children with CKD undergoing renal replacement therapy. Studies were included following criteria (1) quality of life in children with CKD (2) Instruments QOL in children (3) study were included renal replacement therapy: peritoneal dyalisis, hemodialisis, and renal tranplantik. (4) the full-text article was available in English. Results: eight studies were included in this review. Included that evaluated the quality of life of children with CKD undergoing renal replacement therapi by means of evaluation instruments of quality of life. Conclusion: Quality of Life in Children with various QOL instruments from eight articles concluded that QOL is better in children who have undergone kidney transplantation, compared to children with PD and HD. QOL of children with PD was better than children with HD in all domains

Oral health practice and health-related quality of life of a group of children during the early stage of the COVID-19 pandemic in Istanbul.

BACKGROUND:During the pandemic period of coronavirus disease, appropriate oral health management and disease prevention of children are very important for children's oral and general health. The aim of this study was to survey to better understand in children's dental health and dietary habits and to learn about parents' attitudes toward dental treatment and clinical factors associated with their QoL using the Turkish version of KIDSCREEN-10 during the initial stage of the COVID-19 pandemic in the general public.MATERIALS AND METHODS:A two-part questionnaire, namely Part 1 addressed topics regarding changes in general and dental health, dietary habits of children under quarantine, and sociodemographic characteristics of the family and Part 2 impact of QoL was assessed by the KIDSCREEN-10 scale with 10 questions. The questionnaire was sent online using WhatsApp to a convenience sample of mothers with children between the age group of 8 and 18 years, who lived in Istanbul. Variables were statistically analyzed using the Student's t-test for independent samples and Univariate F-test, ANOVA according to the characteristics of variables which were analyzed.RESULTS:This study included 328 from 557 mothers with 58% respondent rate. The consumption of fast food, packaged food, and carbonated beverages decreased during the COVID-19 outbreak. Half of the mothers of children reported that they were anxious or fearful about their children visiting dentists during the pandemic and 64.2% of the children missed routine dental visits. The KIDSCREEN-10 scores for 13 years old or older children were influenced more by the COVID-19 pandemic than those for the 8–12 years old, who had a better QoL (P = 0.008).CONCLUSIONS:The results of this study emphasize the importance of oral health and QoL of children during the initial phase of the COVID-19 outbreak. The general perception of QoL in this group of Turkish children seemed to be substantially affected by COVID-19 outbreak.

Predicting factors impact to quality of life of school age Thalassemic children in Indonesia

Thalassemia is a major genetic blood disorder that considered a public health problem in Indonesia. While significant advances have been made in the clinical management of thalassemia children over the past few decades, our knowledge of the factors affecting the quality of life of thalassemic children is limited and some previous studies have shown contradictory results. The study aimed to analyze factors impacted to the QOL of school-age thalassemic children in Indonesia. A correlational analyt

Family Variables and Quality of Life in Children with Down Syndrome: A Scoping Review.

The purpose of this scoping review was to identify the family and child quality of life variables that have been studied in relation to one another in children with Down syndrome, the frequency with which different relationships have been studied, and the extent to which family variables were the focus of the research aims. A literature search was conducted to find studies published between January 2007 and June 2018. The initial search yielded 2314 studies; of these, 43 were selected for a final review. Researchers most often addressed family resources and family problem-solving and coping concerning child personal development and physical well-being. Little attention to child emotional well-being was observed, with none considering family appraisal of child emotional well-being. The relationship between family variables and child QoL rarely was the primary focus of the study. Methodologically, most reviewed studies used cross-sectional designs, were conducted in North America and based on maternal report. From future research considering the issues found in this review, healthcare providers can obtain an in-depth understanding of relationships between children and family variables.

Behavioral Changes in Children with Constipation: A Cross Sectional Study in the Lebanese Population

Background: Although constipation is a common childhood problem, its global burden was still quite unknown because data from many regions in the world were missing, Lebanon being one of them. This study mainly aimed to assess the effect of constipation on behavioral changes (physical, emotional, social, and school functioning). It was also destined to determine the difference in quality of life between constipated and non-constipated children and to provide the public health community with a study to identify the need of early management. Methods: A cross sectional questionnaire-based survey was conducted by Lebanese University students in 86 children half of whom were constipated. Recruitment took place at Rafic Hariri University Hospital. Results: A statistically significant difference was noted between constipated and nonconstipated children in physical functioning (mean score for non-constipated patients = 75.99; mean score for constipated = 46.44; (P-value < 0.002). Non constipated children also had significantly higher (P-value < 0.001) Emotional Health Summary Score (65.62; 17.71), Social Health Summary Score (75; 18.87), School Health Summary Score (71.58; 14.93), Psychosocial Health Summary Score (71.08; 12.19) than constipated children. Furthermore, the overall PedsQL total scale was significantly higher (P-value < 0.001) in non-constipated children (72.9; 12.45) compared to the constipated (50.86; 11.23). Conclusion: This study showed lower overall QOL in children with constipation, as well as impaired school, social, physical, and emotional functioning. This study shows the importance of evaluating and tackling all the components of wellbeing by pediatricians.

Quality of Life for Children with Cystic Fibrosis in Gaza Strip

Background: CF is a chronic, multisystem genetic disease with a wide variability in clinical severity. CF is a disease of exocrine gland function that involves multiple organ systems but chiefly results in chronic respiratory infections, pancreatic enzyme insufficiency, and associated complications in untreated patients. Many studies explained the lower QOL among adults with CF. in GS there is no previous studies concerned with measuring QOL among CF children Aim of the Study: The aim of this study was to assess the QOL among children with CF. Methodology: The study was descriptive, analytical and cross sectional studies. The study involves all 36 children with CF (less than 12 years old) who attained CF friends center; community based center in Gaza. The researchers uses the questionnaire which included demographic & illness related variables and Quality of life domains (physical, emotional, social and school). Reliability coefficient for the questionnaire was good (Cronbach alpha =0.833). Results and Conclusion: About 61% of the study population were males and 39% were females. Approximately 47% of them were less than 9 years and 53% were more than 9 years. About 41.7% of the study population from Gaza, 25.0% from middle zone, 13.9% from Rafah, 11.1% from Khanyounis and 8.3% from North of Gaza. Housing classification was 38.9%, 33.3% and 27.8 % for property house, renting house and family house respectively. Most of their parents had low educational levels and the majority of them were unemployed and have a monthly income less than 1200 NIS. About 61% of them have another sibling with CF. the majority of them receive Creon at a regular basis. The most common disease associated with them was Respiratory problem with 43.2%, 38.3% had gastrointestinal disease, 14.8% had heart disease and 3.7% had Diabetes Mellitus. The overall perception of the children regarding QOL was low (55%). The social functions was the highest (61.6%), physical functions (55.2%), school function (50.6%), and emotional function (48.8%). The result presented below show that no significant difference in QOL between socio-demographic data (p-value > 0.05) except the difference for QOL between age groups) p-value =0.001). Children older than 9 years old (2.95±0.3) have QOL more than children under nine years of age (2.53±0.4) and this difference was statistically significant as (P value = 0.02 < 0.05). It is also clear that QOL in males are more than female but this difference was not statistically significant. There is a positive correlation with a highly significant difference between QOL and the 4 domains and between domains with each other. Social performance was high correlated with school performance (r = 0.706) while the lowest correlation was between physical and school performance with no significant (p-value =0.065). Recommendations: The study recommend the importance of initiating a program to enhance the QOL for children with CF and focusing on the emotional health for those children as it was the least one perceived.

Quality of Life in Childhood Epilepsy

Abstract Background: Epilepsy is a common chronic neurological condition in developing years that can negatively impact one's physical, social and emotional function. Aim of Study: The aim of this study was to assess the health-related quality of life (HRQOL) and its predictors in children with epilepsy in Egypt, comparing the relationship between different types of seizures and the HRQOL and increasing the awareness of the importance of assessing physical, psychosocial, and behavioral well-being of children with epilepsy in Egypt. Patients and Methods: To assess the health-related quality of life (HRQOL) and its predictors in children with epilepsy in Egypt during the period from August 2019 and December 2019. This cross-sectional study was conducted at Ain Shams Neurology Department and included 75 children with epilepsy of 11-18 years. The tools used to assess children's QOL were pediatric QOL questionnaires. Parents' QOL was assessed using SF36 inventory. Results: Children with epilepsy have an affected quality of life according to the PedQOL assessment tool with a mean PedQOL total score 64.4±6.9 and ranged from 56.1 to 83.6. Among the different domains of the PedQOL inventory, the results of our study showed that children with epilepsy have got higher scores in the physical and the school domains than in the emotional and social domains. Our sample was drawn from Ain Shams University Hospital. Patients attending this health facility are usually from low to intermediate socio-economic status which may explain this result. Conclusion: Epilepsy in children has a great impact on the quality of life of those children particularly on the emotional and social domains. Some antiepileptic drugs like valproic acid have a better effect on the quality of life than others. The higher the children's quality of life the higher is the parents' quality of life. The highly impacted domains of the parents quality of life according to the SF36 questionnaire were role limitation (physical or social), social functioning and mental health domain.

A study on the educational significance of special needs education in basis PHN education - 1st report

Abstract Background For public health nurses to support school-aged children with disabilities who live in the community, it is necessary to understand the mechanism of special needs education and learn the inter-professional collaboration that takes place in it. A survey was conducted on school teachers supporting school-aged children with special needs, and the perception of educational significance in basic PHN education and its related factors were examined. Methods In December 2019, a survey questionnaire was sent to all 1,052 special needs schools in Japan. Of the 350 respondents, 330 valid replies were analyzed. Regarding the significance of providing special needs education in basic PHN education, we asked for answers on a four-point scale from “strongly agree” to “strongly disagree” and scored 4 to 1 points. Then, unpaired t-tests were performed between every two groups of “school-targeted type of disabilities,” “respondent's position,” and “respondent's perception/experience.” In addition, Pearson's correlation coefficient test was performed on the relationship with the years of teacher experience in special needs schools. Results Perception of the significance of providing education was as follows: “school-targeted type of disabilities” refers to school groups with hearing impairments (p < 0.05), “respondent's position” groups are special needs education coordinators (p < 0.05), “respondent's perception/experience” was significantly higher in the group with a high cognition of PHN work (p < 0.05) and in the group with experience of cooperating with PHN (p < 0.001). However, there was no significant correlation with the years of teacher experience in special needs schools. Conclusions There was a high perception of the significance of providing education in school groups with hearing impairment and groups with actual coordination experience, especially where early detection and care were particularly required, regardless of years of teacher experience. Key messages Special needs education should be included in basic PHN education to promote inter-professional collaboration for improving QOL of school-age children with disabilities living in communities. To foster the foundation for promoting special needs education in basic PHN education, in-service PHNs need to work closely with schools to meet their expectations for PHNs.

Quality of life of epileptic children in Minia Governorate: a cross-sectional study

Background Quality of life of childhood epilepsy (QOLCE) is the main outcome that is increasingly being recognized as an essential element in the assessment of the epilepsy effects on life function and also treatment of epilepsy. This study aimed to assess the QOL among the epileptic children. Patients and Methods A cross sectional study design was carried out on 100 children. The study has been held in the Neurology and Psychiatry outpatient clinic of Minia university hospital; In addition to Minia Psychiatry hospital, the official psychiatry hospital in Minia governorate. The total sample included 100 children. Fifty epileptic children aged between 4–18 yrs and 50 apparently healthy children with no chronic illness, of matched age, sex, and social class were included as the control group. Results There was no significant difference between the two groups regarding sociodemographics, except for birth order and number of sibling, as well as for positive family history of epilepsy. Regarding the electroencephalography changes, there was a significant difference between the two groups. There was a statistically significant difference between the two groups regarding the low QOLCE score. Polytherapy had low score on QOLCE, especially in emotional, social, physical, and total score. Conclusions Childhood epilepsy affects the QOL of the epileptic children, especially cognitive, social, emotional, and physical functions. Polytherapy was associated with more impairment of QOL. On the contrary, epileptic patients who were compliant to treatment had good QOL.

Long-term quality of life in children with complex needs undergoing cochlear implantation

ObjectivesAn estimated 30–40% of children undergoing cochlear implantation (CI) have additional disabilities and traditional outcome measures are often not reliable or appropriate. Few studies have evaluated long-term quality of life (Qol) in this group. Our aim was to assess long term QoL of children implanted with complex needs against a cohort of children implanted without. We also compared both groups for secondary outcome measures such as parental opinion, complications and hours of device wear. MethodsA retrospective casenote review of all children undergoing assessment between 2005 and 2010 was undertaken. Children with complex needs were identified using the Scottish Complex Needs Group Criteria (ISD 2006). Quality of life was measured using the GCBI (Glasgow Children's Benefit Inventory) which is a validated questionnaire suitable for the retrospective assessment of health-related QoL following paediatric surgical interventions. It consists of a 200-point scale which ranges from −100 (maximal harm) to +100 (maximal benefit) and can be analysed in four QoL subdomains (health, vitality, physical, learning). Parents were also asked to complete a simple questionnaire asking if they would recommend CI to other families and whether they would wish their child to undergo CI if given the option again. Results174 children were implanted and 17 (10%) were found to have complex needs. Follow-up ranged from 4 to 9 years. Total GCBI scores were similarly high between groups but significantly higher scores were found in the emotion (p = 0.05) and learning domains (p = 0.03) in the complex needs group. Linear regression analysis was used to show that total GCBI score was not influenced by the number of categories of impairment (R2 = 0.0123) in the complex needs group. All parents of children with complex needs said that they would proceed with implantation again or recommend to a friend. The complication rate in the complex needs group was higher (29 vs 15%), with device failure being particularly more common. Data-logging was consistent between both groups. A higher rate of development of significant other health issues that could affect outcome was found in the complex needs group (35% vs 8%). ConclusionsOur study suggests that children with complex needs have comparable long-term QoL scores to those without and seem to particularly benefit in the domains of learning and emotion. Complications are higher in this group and there remains an increased risk of further development of medical conditions following early implantation, which may influence progress.

Effect of Family Empowerment Education on Pulmonary Function and Quality of Life of Children With Asthma and Their Parents in Tunisia: A Randomized Controlled Trial

PurposePatient education is fundamental in asthma management, especially at pediatric age. It is increasingly recognized as effective in reducing the burden of the disease, but is less clear in improving the quality of life of children with asthma and their parents. This study assessed the effect of an asthma therapeutic education program on pulmonary function and quality of life in children with asthma and their parents. Design and methodsA monocentric randomized controlled trial conducted in Farhat Hached University Hospital of Sousse (Tunisia) from May 2018 to September 2019. Thirty-seven families in the experimental group and 39 families in the control group received allocated intervention at baseline. Thirty-four families in each group completed the study at the 12-month follow-up. ResultsThe intervention significantly improved quality of life scores of children and their parents (all p < 0.05). Children in the experimental group had significantly better forced expiratory maneuver than children in the control group. Nonetheless, the FEV1/FVC ratio did not show any significant difference in the experimental and control group (p = 0.9; p = 0.14, respectively). ConclusionsThis study demonstrated that a long-term family-based asthma education program resulted in better pulmonary function and QOL of children and parents enrolled in the intervention group, particularly children with non-allergic asthma. Practice implicationsFamily-based asthma education can reduce the burden of allergic and non-allergic asthma on children and their parents through improving their quality of life. Also, the pulmonary function of children with non-allergic asthma was improved due to My Asthma Therapeutic Education intervention.

Development of a validated short-form of the Childhood Atopic Dermatitis Impact Scale, the CADIS-SF15.

The Childhood Atopic Dermatitis Impact Scale (CADIS) with 45 items may be burdensome to complete. We therefore aimed to develop a CADIS short-form. Parents of 300 children completed the prototype CADIS. Exploratory factor analysis was conducted on the 45-item CADIS version. The most representative items were chosen. Confirmatory factor analysis was used to confirm the a priori factor structure. Content validity was assessed in a focus group of patients, parents, clinicians, methodologists and industry delegates. Internal consistency, 48-h test-retest reliability, construct validity and responsiveness of the newly developed short-form were assessed. A total of 270 families provided data at baseline, 34 after 48h and 228 after 4weeks. Fourteen items of three different factors fulfilled the proposed eligibility criteria and were included in the draft short-form. After the content validity rating, one item relating to the child's sleep was added to further improve content validity. The confirmatory factor analyses showed good model fit, and a 15-item short-form was initiated, the CADIS-SF15. The total scale and the three domains showed good internal consistency and test-retest reliability. The correlation between SCORAD and other subjective measures was consistent with our hypotheses. Differences in scores between mild, moderate and severe AD patients were significant, and the CADIS-SF15 was able to detect changes in 'improving' patients over time. The CADIS-SF15 with 15 items in three domains is an internally consistent, reliable, valid, responsive and brief measure of QoL in children affected with AD and their parents. Further evaluation of clinical applicability is required.

Use of a mobile application for self-management of pancreatic enzyme replacement therapy is associated with improved gastro-intestinal related quality of life in children with Cystic Fibrosis

BackgroundMost patients with cystic fibrosis (CF) suffer from pancreatic insufficiency (PI), leading to fat malabsorption, malnutrition, abdominal discomfort and impaired growth. Pancreatic enzyme replacement therapy (PERT) is effective, but evidence based guidelines for dose adjustment are lacking.A mobile app for self-management of PERT was developed in the context of the HORIZON 2020 project MyCyFAPP. It contains an algorithm to calculate individual PERT-doses for optimal fat digestion, based on in vitro and in vivo studies carried out in the same project.In addition, the app includes a symptoms diary, educational material, and it is linked to a web tool allowing health care professionals to evaluate patient's data and provide feedback. MethodsA 6-month open label prospective multicenter interventional clinical trial was performed to assess effects of using the app on gastro-intestinal related quality of life (GI QOL), measured by the CF-PedsQL-GI (shortened, CF specific version of the Pediatric Quality of Life Inventory, Gastrointestinal Symptoms Module). ResultsOne hundred and seventy-one patients with CF and PI between 2 and 18 years were recruited at 6 European CF centers. Self-reported CF-PedsQL-GI improved significantly from month 0 (M0) (84.3, 76.4–90.3) to month 6 (M6) (89.4, 80.35–93.5) (p< 0.0001). Similar improvements were reported by parents. Lower baseline CF-PedsQL-GI was associated with a greater improvement at M6 (p < 0.001). ConclusionsThe results suggest that the MyCyFAPP may improve GI QOL for children with CF. This tool may help patients to improve self-management of PERT, especially those with considerable GI symptoms.

Abstract 158: Satisfaction With Appearance In Patients With Cleft Lip And/or Palate: Patient-reported Outcomes Using The Cleft-q At The University Of Pittsburgh

Purpose: To date, surgical outcomes after cleft lip and/or palate (CL/P) surgery have been largely determined by the assessment of surgeons or bystanders, underestimating what might matter to patients. The CLEFT-Q is a new, validated patient-reported outcome (PRO) instrument that evaluates patient satisfaction and QOL in children and adolescents with CL/P through different life domains. Our aim was to evaluate the satisfaction of patients with CL/P with their own appearance, using the CLEFT-Q as a metric. Methods: Patients 8-29 years with a diagnosis of CL/P visiting our institution’s craniofacial center from 2015-2016 were included during the phase II stage of the CLEFT-Q multicenter validation. The CLEFT-Q questionnaire was administered during the visit, ensuring it was filled with no parental interference. Only the appearance domain was used, including questions on face, nose, nostrils, lips, cleft scar, teeth and jaws. Rasch-transformed scores were analyzed using one-way ANOVAS to detect significant main effects and interactions between groups (p<0.05, two-tailed) with Fisher posthoc tests. Results: 101 patients (female n=53; male n=48) were included, with diagnoses including the common range of CL/P deformities (CL, CP, CL+P, CL+A, and BL CL+P). The majority (55%) were aged 8-11; 37.6% between 12-17; and 6.9% aged 18 or older. Nose and nostril scores were the lowest of appearance satisfaction scores in patients whose deformity included CL. Patients with CP had a significantly higher nose and nostril scores compared to CL, CL+P, CL+A, and BL CL+P (p=0.003, 0.000, 0.029, and 0.039, respectively). Lip or cleft scar scores were not significantly different between any groups. While scores for nose appearance satisfaction did not vary significantly between age groups in males, scores trended lower with increasing age in females (p=0.012). The same was seen in nostril scores (p=0.038), and trended for significance in lip scores (0.054). Satisfaction was lower in the 12-17 years category. Females in the 18+ age group scored lower than males across all appearance items. Conclusion: PRO tools are essential to understand what patients value to better guide surgical decisions. Adolescents are particularly vulnerable in terms of satisfaction with their appearance, which could warrant closer follow up. Nasal aesthetics are a particularly concerning feature to patients with any type of CL. The lower satisfaction rates with increasing age in females should be addressed, and may warrant additional attention to cosmetic details when reaching adulthood.

Music therapy in pediatric asthma improves pulmonary function while reducing hospitalizations

Objective: The aim of this study was to evaluate music therapy (MT), in conjunction with standard care, as a complementary option for asthma management in pediatric patients.Methods: 173 children were randomly assigned to one of three groups: 1) Music: a single individualized MT session along with a recorder and journal with instructions for home use; 2) Music Plus: weekly group MT sessions along with a recorder and journal for home use; or 3) Control: standard of care. Primary endpoints included pulmonary function tests (FEV1, FVC, FEF25-75, PEF), hospitalizations, ER visits, missed school days, and quality of life (Juniper).Results: Significant intergroup differences relative to Controls were observed for FEV1/FVC (Music and Music Plus, p < 0.05) and FEF25-75 (Music Plus; p < 0.01). Music Plus participants experienced fewer hospitalizations compared to Controls (p < 0.001), corresponding to 1.16 fewer hospitalizations per patient-year. Caregivers’ perception of their children's QOL significantly increased in the Music (p = 0.011) and Music Plus (p < 0.001) groups compared to Controls.Conclusion: These results reflect MT’s potential to favorably impact pediatric asthma management as a child-friendly, low-risk intervention. Further research is needed to substantiate the possible benefits of incorporating MT into standard treatment regimens.

Motor outcome, executive functioning, and health-related quality of life of children, adolescents, and young adults after ventricular assist device and heart transplantation.

The aim of the current study is to measure long-term executive function, motor outcome, and QoL in children, adolescents, and young adults after VAD and Htx. Patients were examined during routine follow-up. Investigation tools were used as follows: Examination for MND of motor outcomes, Epitrack® for attention and executive functioning, and Kidscreen-52 and EQ-5D-5L questionnaires for QoL. Additional data were retrospectively obtained by an analysis of patient medical records. Out of 145 heart transplant recipients at the department of pediatric cardiology of the University Hospital Munich, 39 were implanted with a VAD between 1992 and 2016. Seventeen (43.6%) patients died before or after Htx; 22 (56.4%) patients were included in our study. Mean age at transplant was 9.52years (range: 0.58-24.39years, median 9), and the mean follow-up time after Htx was 6.18years (range: 0.05-14.60years, median 5.82). MND examination could be performed in 13 patients (normal MND: n=11, simple MND: n=1, complex MND: n=1). Executive functioning was tested in 15 patients. Two (13.3%) patients had good results, six (40%) average results, three (20%) borderline results, and four (26.7%) impaired results. QoL (Kidscreen n=7, EQ-5D-5L n=8) was similar to a healthy German population. Motor outcome, executive functioning and QoL in survivors of VAD bridging therapy and Htx can be good, though underlying diseases and therapies are associated with a high risk of cerebral ischemic or hemorrhagic complications.

Quality of life of children with cerebral palsy living in Kerala, India

Background: The present study aimed at capturing the quality of life of children with cerebral palsy living in Kerala using the culturally adapted version of an international tool, CPQOL- child.&#x0D; Materials and methods: Adopting multistage cluster sampling, data from 252 children was collected by telephonic interview coupled with mail survey. Data was analyzed with the help of IBM SPSS 21.0.&#x0D; Results: The first and the best output of the study was CPQOL-child (Malayalam), the locally adapted version of an international tool valid for use among children with CP living in Kerala. Child’s means of communication, severity of CP, gross motor function, parental wellbeing and family health were found to be the significant determinants of QOL. Parent stress was found to have a significant effect on parent reported QOL scores of children with cerebral palsy (r=-.574, p&lt;.001). Parent’s perceived level of happiness (β=.40, p&lt;.001), being the most significant predictor of the model of overall QOL of children with CP calls for efforts to ensure parental wellbeing as the most effective way to ensure child’s QOL.&#x0D; Conclusion: Family health (R2=.498) explained about half of the variability in QOL scores of children with CP living in Kerala calls for immediate tailor made interventions for family centered care.

Assessing gastro-intestinal related quality of life in cystic fibrosis: Validation of PedsQL GI in children and their parents.

BackgroundMost patients with cystic fibrosis (CF) suffer from pancreatic insufficiency, leading to fat malabsorption, malnutrition and abdominal discomfort. Until recently, no specific tool was available for assessing gastro-intestinal related quality of life (GI QOL) in patients with CF. As the Horizon2020 project MyCyFAPP aims to improve GI QOL by using a newly designed mobile application, a sensitive and reliable outcome measure was needed. We aimed to study the applicability of the existing child-specific Pediatric Quality of Life Inventory, Gastrointestinal Symptoms Scales and Module (PedsQL GI) in children with CF.MethodsA multicenter, prospective observational study was performed in 6 European centers to validate the PedsQL GI in children with CF during 3 months.ResultsIn total, 248 children and their parents were included. Within-patient variability of PedsQL GI was low (24.11), and there was reasonable agreement between children and parents (ICC 0.681). Nine of 14 subscales were informative (no ceiling effect). The PedsQL GI and the median scores for 4 subscales were significantly lower in patients compared to healthy controls. Positive associations were found between PedsQL GI and age (OR = 1.044, p = 0.004) and between PedsQL GI and BMI z-score (OR = 1.127, p = 0.036). PedsQL GI correlated with most CFQ-R subscales (r 0.268 to 0.623) and with a Visual Analogue Scale (r = 0.20).ConclusionsPedsQL GI is a valid and applicable instrument to assess GI QOL in children with CF. Future research efforts should examine the responsiveness of the CF PedsQL GI to change in the context of clinical interventions and trials.

Peak nasal inspiratory flow in children with allergic rhinitis. Is it related to the quality of life?

Introduction and ObjectivesAllergic rhinitis (AR) is the most common allergic disease in childhood. Nasal obstruction is a typical symptom of AR, however, its quantification by clinical examination is difficult. To provide an objective assessment of nasal patency, the peak nasal inspiratory flow (PNIF) is used. Symptoms of AR have a noticeable impact on the quality of life. The aim of this study was to assess which factors may have an impact on PNIF values and to evaluate the possible relationships between PNIF and QoL in children with AR. Patients and MethodsWe recruited patients aged 6–17 years (n = 208, 89 girls and 119 boys) with AR. All children underwent PNIF measurements. Parents and children completed KINDL-R generic questionnaires, to assess the quality of life of the children. ResultsThe average PNIF value was 98.9 ± 37.4 L/min. A very strong (p < 0.001) relationship between the PNIF value and height, age and weight of the child was observed. The sex of the patient has no influence on the PNIF value. We showed that PNIF values significantly increased with each attempt. The children assessed their QoL at 45.6 ± 8.5 points in the KINDL-R questionnaire and the parents rated their children’s QoL at 73.7 ± 10.7 points. We observed a weak negative correlation between PNIF and the QoL based on the parents’ assessment and the child’s self-assessment. ConclusionsPNIF values depend mostly on height, but also on the child’s age and weight. A learning effect (significant increase in PNIF upon each attempt) was shown. Higher PNIF does not improve the QoL.

Health-Related Quality of Life and Home Enteral Nutrition in Children with Neurological Impairment: Report from a Multicenter Survey.

We aimed to measure the health-related quality of life (HRQoL) of children with neurological impairment (NI) on home enteral nutrition (HEN). An original survey among the caregivers of NI children on HEN for ≥ 12 months followed in three Italian centers (Messina, Como and Varese) was carried out between January 2013 and September 2018. The questionnaire was made up of 12 issues focused on the frequency with which certain situations associated with HEN are perceived, and grouped into physical and psychological/social dimensions. The results were analyzed statistically according to the age of the children, underlying disease, and the HEN programs’ duration. In total, 80 caregivers were approached, and 75 surveys were completed (an overall response rate of 93.7%). Nearly all the caregivers reported a satisfying HRQoL, ranging from acceptable (n = 6, 8%), to good (n = 22, 29.3%), to excellent (n = 47, 62.7%). A significant correlation was found between HRQoL and underlying NI-associated disease (p = 0.001). Our data showed that HEN positively affects the QoL of NI children and their caregivers. This should encourage healthcare providers to consider this nutritional intervention early in the approach to this group of patients, in order to prevent or reduce QoL impairment.