Dataset Information

The Quality of Life of Children with Myelomeningocele: A Cross-Sectional Preliminary Study.

ABSTRACT: To investigate the relationship between the defects and symptoms caused by myelomeningocele (MMC) and quality of life. A cross-sectional questionnaire survey. The subjects were 52 parents of children with MMC. Structured questionnaires were used: the Pediatric Quality of Life Inventory 4.0 Generic Core Scales (PedsQLTM 4.0) and a Study-Specific Questionnaire (SSQ). The overall PedsQLTM 4.0 score was 56.4 (SD ± 14.7). A strong, significant negative correlation was found between the children's age and emotional functioning. Functioning in this area deteriorated with age by a mean of 1.5 points per year of age. Children with no hydrocephalus functioned significantly better than those with this defect in the physical, social, and school areas (p < 0.05). Foot deformities significantly (p = 0.033) adversely affected the children's physical functioning. Living in a single-parent family had no statistically significant impact on functioning in any of the areas analyzed (p > 0.05). Understanding the QoL of children with MMC and identifying its determinants may help in planning interventions to minimize the adverse impact of the illness.

SUBMITTER: Rozensztrauch A

PROVIDER: S-EPMC8535957 | biostudies-literature | 2021 Oct

REPOSITORIES: biostudies-literature

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The Quality of Life of Children with Myelomeningocele: A Cross-Sectional Preliminary Study.

Rozensztrauch Anna A Iwańska Magdalena M Bagłaj Maciej M

International journal of environmental research and public health 20211013 20

<h4>Objectives</h4>To investigate the relationship between the defects and symptoms caused by myelomeningocele (MMC) and quality of life.<h4>Design</h4>A cross-sectional questionnaire survey.<h4>Methods</h4>The subjects were 52 parents of children with MMC. Structured questionnaires were used: the Pediatric Quality of Life Inventory 4.0 Generic Core Scales (PedsQL<sup>TM</sup> 4.0) and a Study-Specific Questionnaire (SSQ).<h4>Results</h4>The overall PedsQL<sup>TM</sup> 4.0 score was 56.4 (SD ± 1 ...[more]

PMID: 34682497

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Project description:BackgroundTransplantation is a saving therapeutic that has heavy consequences. The quality of life (QoL) of transplanted children and their parents has been little studied and should help physicians better manage these patients. The objectives of the study were to assess: (1) the QoL of transplanted children and parents and compare it with that of children with other chronic conditions associated with long-term consequences, and (2) potential variables modulating the QoL.MethodsThis cross-sectional study was performed in a multidisciplinary paediatric unit (Timone Hospital, Marseille, France). Children were less than 18 years old; had a liver, kidney or heart transplant; and had a time since transplantation of 1-10 years. Socio-demographics and clinical data were recorded from medical forms. The QoL was assessed using the VSP-A (Vécu et Santé Perçue de l'Adolescent et de l'Enfant) and the WhoQoL self-reported questionnaires.ResultsForty-five families were included (response rate: 76%). The transplanted organs were the liver for 20 children, the kidney for 15 children, and the heart for 10 children. The QoL of transplanted children reported by their parents was better than that of children with inborn errors of metabolism and similar to that of childhood leukaemia survivors. The QoL of parents of transplanted children was better than that of parents of children with inborn errors of metabolism and did not differ from French norms. The QoL did not differ according to the nature of the transplanted organ, sex or the main sociodemographic data. The main modulators decreasing QoL were residual treatment level, medications switch and the presence of another regular treatment.ConclusionTransplanted children and their families reported a fairly preserved QoL compared to children with other chronic health conditions. Special attention should be given to QoL modulators related to therapeutic management (medication switches, regular treatments) that might be amenable to improve the QoL. Trial registration Ethics committee of Aix-Marseille University, France (reference number: 2014-08-04-03, 24/4/2015; https://www.univ-amu.fr/fr/public/comite-dethique ).

Project description:ObjectivesTo determine if children with idiopathic toe walking (ITW) reach Australian 24-hour movement guidelines. Additional objectives were to identify any factors associated with moderate to vigorous physical activity time of children with ITW.DesignCross sectional.SettingPrivate practice, public health outpatient, community clinics.ParticipantsChildren between 4 and 14 years, who toe walked and had no medical conditions known to cause ITW.Outcome measuresPhysical activity intensity, sedentary behaviour and sleep data were collected via an ActiGraph. Physical activity level intensity data were triangulated with the Child Leisure Activities Study Survey (CLASS) to highlight the subjective nature of parent-reported measures. Health related quality of life information was collected using the Parent-Proxy and Child-Self Report Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core Scale. Regression analyses were used to explore individual factors associated with moderate to vigorous physical activity.ResultsTwenty-seven participants, 17(63%) male, age mean = 6.62 (SD = 2.29) years, provided information on physical activity (CLASS n = 18, ActiGraph n = 22), physical functioning and psychosocial functioning domains on the PedsQL (Parent-Proxy n = 25, Child n = 22). All participants exceeded Australian recommendations for physical activity, 44% (8/18) met recommended screen time amounts, and two (9%) met recommended sleep times. The Child-Self Report PedsQL scale score of social functioning was the only factor associated with an increase in physical activity (Coef = 0.48, 95%CI = 0.09 to 0.87, p = 0.019).ConclusionParticipants achieved high levels of daily moderate to vigorous physical activity, and this was associated with social functioning. Given current uncertainty regarding benefits and effectiveness of treatment choices for children who have ITW, these findings should encourage clinicians to consider how their treatment recommendations interact with the PA level and sleep of children with ITW. Any treatment choice should also be implemented with consideration of how it may impact social functioning. This study had a small sample size therefore results should be cautiously interpreted and not generalised to all children with ITW.

Project description:IntroductionThe development in therapeutic strategies has increased survival of children affected by inborn errors of metabolism with restricted diet (IEMRD). These diseases have mild- and long-term consequences on the health. Little is known about the impact on the quality of life (QoL) of children and their families. The aims of this study were: to compare the QoL of the children and parents affected by IEMRD with the QoL of the general population and one pathology associated with long-term consequences.Patients and methodsThis cross-sectional study was performed at the French Reference Center for inborn metabolic disorders (Marseille, France). Inclusion criteria were: a child with a diagnosis of organic aciduria, urea cycle defect, or maple syrups urine disease (MSUD). Socio-demographics, clinical data, and QoL were recorded.ResultsTwenty-one of 32 eligible families were included during a planned routine visit. Ten (47%, 95% CI 27-69%) children were affected by organic aciduria, six (29%, 95% CI 10-48%) by urea cycle defects, and five (24%, 95% CI 6-42%) by MSUD. Among the younger children, the general well-being was significantly lower in the children with IEMRD than in the leukemia children (58 ± 16 versus 76 ± 15, p = 0.012), and among the older children, the leisure activities were significantly lower in the children with IEMRD than in the leukemia children (29 ± 18 versus 62 ± 22, p < 10-3), while the relationships with teachers were better (76 ± 23 versus 60 ± 23, p = 0.01). The physical QoL score was lower in the parents than in the French norms (66 ± 21 versus 75 ± 1, p = 0.05). Factors modulating QoL were: eating and neurologic disorders, enteral nutrition, and feeding modalities.ConclusionThe children and the parents of children affected presented altered 'physical' and 'social' QoL scores compared with the norms and patients with leukemia and their families. Future studies based on larger cohort studies should determine the different weights of potential predictive factors of QoL.

Dataset Information

The Quality of Life of Children with Myelomeningocele: A Cross-Sectional Preliminary Study.

Publications

The Quality of Life of Children with Myelomeningocele: A Cross-Sectional Preliminary Study.

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