Évaluation de la qualité de vie en pédiatrie : comment recueillir le point de vue de l'enfant

doi:10.1016/S0929-693X(97)82616-4

Archives de Pédiatrie

Volume 4, Issue 12, December 1997, Pages 1238-1246

https://doi.org/10.1016/S0929-693X(97)82616-4 Get rights and content

Résumé

Les instruments d'évaluation de la qualité de vie de l'enfant sont encore peu développés, surtout dans la dimension de prise en compte de l'avis de l'enfant lui-même à propos de a qualité de vie. Le questionnaire AUQUEI, que nous proposons, se compose d'une échelle fermée (26 items), qui explore la satisfaction des enfants à l'aide de paliers imagés dans différents domaines de leur vic. Il s'agit d'un autoquestionnaire destiné aux enfants de 4 à 12 ans. La validation de l'èchelle fermée a montré des qualités métrologiques satisfaisantes et la capacité du questionnaire à différencier une population d'enfants porteurs d'une pathologie (séropositivté VIH). Parallèlement, une question ouverte du quetionnaire AUQUEI permet de recenser les domaines spontanément pris en considération par les enfants lorsqu'ils sont interrogés à propos de leurs sources d'insatisfaction ou de satisfaction. La mise en évidence de ces critères pertinents pour les enfants a permis d'élargir l'échelle fermée et de comprendre comment se structure la notion de qualité de vie chez un enfant. Cette étape indispensable permet d'éviter un écueil courant dans l'évaluation de la qualité de vie de l'enfant, à savoir calquer les évaluations sur celles réalisées chez l'adulte, ou encore ne prendre en compte que les critères du concepteur du questionnaire. L'étude statistiques des réponses obtenues à cetter question ouverter montre que là encore il est possible de différencier les enfants porteurs d'une pathologie. Les deux parties du questionnaire AUQUEI appraissent donc complémentaires, et son usage devrait permettre de mieux connaître le vécu des jeunes patients à propos des divers aspects de leur vie, et de suivtre leur évolution. Cet instrument a bien sa place en éclairage d'une démarche d'évaluation clinique traditionnelle.

Summary

There are very few available child quality of life questionnaires. We describe here a French questionnaire (AUQUEI) which consists of a structured format scale (26 items). The first part of the questionnaire studies child satisfaction. Response levels are measured by checking faces expressing different emotional states. The validation is satisfactory, and the questionnaire is able to differentiate healthy children from sick children (HIV positive). A second part of the questionnaire focuses on the child's own quality of life, and is based upon open-ended questions. This second approach allows to broaden the structured format scale and improves the understanding of the child's quality of life. It constitutes a necessary complement to the first part as it avoids using mechanically adult-specific concepts for children. We also found it to be sensitive enough to distinguish sick children from healthy ones. The AUQUEI questionnaire with its two complementary parts appears to be a potentialy valuable tool to better understand the experience of sick children, in the various aspects of their life, and to follow their evolution.

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There are more references available in the full text version of this article.

Cited by (62)

Impact of epilepsy surgery on quality of life and burden of caregivers in children and adolescents
2020, Epilepsy and Behavior
Citation Excerpt :
The use of Zarit Burden Interview inventory (Zarit Burden Interview) is reliable to be used as a measure of the impact on the caregiver's physical and emotional well-being, their social and family life, and financial aspects [26]. The AUQUEI and QOLIE-AD-48 are epilepsy-specialized instruments applicable to children and adolescents, respectively, designed to evaluate QOL from a patient's perspective [27–29]. They both have been proven to show good validity and reliability.
The objective of this study was to analyze the impact of pediatric epilepsy surgery on the quality of life (QOL), determining whether patients improve, worsen, or maintain their preoperative patterns, as it relates to the burden of caregivers, as well as evaluating potential related factors, from both the children and caregivers perspectives.
This is a retrospective study of children and adolescents who underwent epilepsy surgery and were evaluated through clinical data, videoelectroencephalogram (V-EEG), neuroimaging findings, neuropsychological testing, and aspects of QOL. These assessments were performed prior to surgery and after six months and two years of follow-up. Quality of life was assessed with epilepsy-specialized questionnaires, namely Questionnaire health-related quality of life for children with epilepsy (QVCE-50), Autoquestionnaire Qualité de Vie Enfant Image Scale (AUQUEI), Quality of life in epilepsy inventory for adolescents (QOLEI-AD-48); and burden of caregivers with Burden Interview — ZARIT scale. Postoperative changes in QVCE-50 were quantified using measures of the analysis of variance (ANOVA MR) for comparison of the difference between the three times of the scale and domains.
Fifty patients were enrolled. Of these, 27 (54%) were male, with a mean age at surgery of 8.2 years (range: 1–18 years). Thirty-five patients (70%) were Engel I and one was Engel II (2%) at six months of follow-up, whereas 28 (56%) were Engel I and 32 (64%) were Engel I or II at two years of follow-up. Preoperatively, 21 (42%) presented with moderate or severe intellectual disability. Postoperative cognitive evaluations at the two-year follow-up showed 18 (36%) maintained similar deficits. The QVCE-50 showed postoperative improvement in the two-year follow-up period, but not at six months after surgery. Postoperative improvements were associated mainly with better seizure outcome. Autoperception evaluations were limited because of the clinical and cognitive severity of patients. The burden of caregivers was quoted as mild to moderate and remained unchanged postoperatively.
Children and adolescents with surgically treated epilepsy reach a good seizure outcome, stabilize in intellectual and adaptive functions, and have an increase in QOL, from the caregiver's perspective. Nevertheless, their burden remains unchanged. Seizure outcome is the main factor for improvement in the QOL. The upgrading of structured questionnaires and QOL instruments specific to pediatric epilepsy can be helpful to assess patient- and caregiver-reported surgical outcomes, allowing for better planning of therapeutic approaches.
A Rights-Based Approach for Service Providers to Measure the Quality of Life of Children with a Disability
2018, Value in Health
Citation Excerpt :
QoL instruments are available for children aged 2 months to 18 years. Self-report versions are available for children as young as age 3 (TedQL [24]) or 4 (AUQUEI [25], KINDL [26]). Six instruments focused on children only (N = 5; AUQUEI, QUALIN, ExQoL [27], ITQoL, QoLQC [28], TedQL) and four focused on adolescents only (QoLP-AV [29], QoLQA [30], TQoLQA [31], YQoL [32]).
This paper identifies the best instruments for service providers to measure the quality of life (QoL) of children with a disability, with a focus on their alignment with the Convention on the Rights of Persons with a Disability (CRPD).
This study reviewed systematic reviews to identify generic QoL instruments for children and adolescents, followed by an appraisal process using newly developed criteria. QoL instruments with a health status, functioning, and condition-specific focus were excluded.
Twenty generic QoL instruments for children were identified from existing systematic reviews to undergo further review. Only 2 of the 20 instruments were recommended for service providers to measure the QoL of children with a disability (KIDSCREEN and KINDL). Many pediatric QoL instruments (N = 9) focus on functioning and are not consistent with the CRPD, confounding a child’s functioning with their feelings about their life. KIDSCREEN and KINDL have self-report and parent report versions, are applicable for childhood and adolescence, demonstrate adequate reliability and validity, involved children in their development, focus on wellbeing, are likely to be able to be completed by a child with a disability, and are low in cost.
Many instruments focus on functioning rather than wellbeing and thus may not capture the QoL of children with a disability. A child’s functional limitations may not be consistent with their feelings about life. Two instruments that assess wellbeing and meet the criteria important for service providers now require further testing to explore their usefulness and validity for children with varying abilities.
Design of the DREPAGREFFE trial: A prospective controlled multicenter study evaluating the benefit of genoidentical hematopoietic stem cell transplantation over chronic transfusion in sickle cell anemia children detected to be at risk of stroke by transcranial Doppler (NCT 01340404)
2017, Contemporary Clinical Trials
Citation Excerpt :
Major pain is associated with worse school functioning in the parent report and with poor physical and psychosocial child self-reports [54]. The aim is to evaluate by self-questionnaire the quality of life of SCA children as well as the quality of family life [60–66], as the transplant or non-transplant may have disrupted or improved the family's experience of the disease. Psychological conditions are evaluated by psychologists in each center but not measured for research.
Children with sickle cell anemia (SCA) have an 11% risk of stroke by the age of 18. Chronic transfusion applied in patients detected to be at risk by transcranial Doppler allows a significant reduction of stroke risk. However, chronic transfusion exposes to several adverse events, including alloimmunization and iron overload, and is not curative. Hematopoietic stem cell transplantation allows termination of the transfusion program, but its benefit has not been demonstrated.
DREPAGREFFE (NCT01340404) is a multicenter, prospective trial enrolling SCA children younger than 15 years receiving chronic transfusion due to a history of abnormal transcranial Doppler (velocities ≥ 200 cm/s). Only those with at least one non-SCA sibling and parents accepting HLA-typing and transplantation with a genoidentical donor were eligible. Chronic transfusion was pursued in patients with no available donor, whereas others were transplanted. Comparison between the 2 arms (transfusion vs transplantation) was analyzed using both genetic randomization and propensity-score matching as a sensitivity analysis. The primary end-point was the velocity measure at 1 year. Secondary endpoints were the incidence of stroke, silent cerebral infarcts and stenoses, cognitive performance in comparison with siblings, allo-immunization, iron-overload, phosphatidyl-serine, angiogenesis/hypoxia, brain injury-related factor expression, quality of life and cost.
To show that genoidentical transplantation decreases velocities significantly more than chronic transfusion in SCA children at risk of stroke.
DREPAGREFFE is the first prospective study to evaluate transplantation in SCA children. It compares the outcome of cerebral vasculopathy following genoidentical transplantation versus chronic transfusion using genetic randomization and causal inference methods.
The placement courses and the subjective quality of life of 6- to 11-year-old children living in child welfare institutions
2015, Encephale
En dehors des maladies, la notion de qualité de vie est de plus en plus utilisée pour rendre compte des conséquences psychologiques et sociales d’autres situations de vulnérabilité rencontrées par les individus, y compris de jeunes enfants. L’objectif de cette étude est de comparer la qualité de vie d’enfants placés en institution suite à une mesure de protection de l’enfance et d’enfants vivant dans leur famille, ainsi que d’examiner ses relations avec leur parcours de placement. La population est composée de 56 enfants de 6 à 11 ans dont 28 étaient placés dans une institution relevant de la protection de l’enfance au moment du recueil de données. Les éducateurs référents des enfants placés ont rempli un questionnaire permettant de retracer leur parcours de placement et l’ensemble des enfants ayant participé à l’étude ont évalué la perception qu’ils avaient de leur qualité de vie. Les résultats montrent que si la qualité de vie des enfants placés ne se distingue pas de celle des autres enfants, en revanche, elle apparaît étroitement liée aux causes et à la multiplicité des lieux de placement. Ces résultats sont interprétés à la lumière des travaux issus de la théorie de l’attachement.
Besides diseases, the concept of quality of life is increasingly used to account for the consequences of other vulnerability situations that may be encountered by individuals, including young children. However, very few studies have examined children's perception of their quality of life in the context of child welfare and protection, and they yielded mixed results.
The objectives of this study were (1) to compare the subjective quality of life of children placed in institution with that of children living in their families, by controlling for child sex, age, socioeconomic and familial status, and (2) to examine its relations with their placement course in the child welfare system.
The sample of this study was composed of 56 children aged 6 to 11, 28 of which were placed in a child welfare institution. Information about the placement course of institutionalized children was given by their social workers and the quality of life of all participants was assessed with the AUQUEI questionnaire. This self-report, which is based on children's conception of their quality of life, allows assessment of four distinct dimensions in addition to the overall score: leisure, performances, relations and family life, and separation.
According to the results, the quality of life of children placed in institutions did not differ from that of children living in their families. However, its perception was closely related to the placement course of institutionalized children in the child welfare system. Whereas maltreated children obtained lower overall and performance scores than their neglected peers, children placed in foster families before institution had a poorer perception of their quality of life in the domains of family life and separations.
These results are interpreted in light of attachment research and theory. Indeed, the relations between children's quality of life and their placement course could be explained by their high level of attachment disorganization. Finally, the results of this study suggested that children were well aware of their difficulties and that they can easily be identified by directly assessing the children's quality of life.
Self-reported quality of life has no correlation with functional status in children and adolescents with spinal muscular atrophy
2011, European Journal of Paediatric Neurology
Spinal muscular atrophy is one of the most common neuromuscular disorders in children. Associated with progressive muscular weakness, it may assume a chronic course. In chronic disorders it is of utmost importance to determine the quality of life level.
To determine the level of quality of life in a cohort of SMA children and adolescents, and study its relation to motor ability.
From the children and adolescents with confirmed SMA diagnosis (presence of deletion) followed at a University Hospital, we selected those that were 4 years or older. They were classified as SMA type II or III according to their best motor ability, evaluated according to the modified Hammersmith functional score, and undertook the AUQEI Portuguese version to determine quality of life. This is an Institutional Review Board approved study and consent was given by all those included.
Thirty-three children and adolescent with a mean age of 10.28 (±4.71) took part of the study. The fourteen SMA type II had a mean Hammersmith score of 11 (±9.50) and AUQEI of 55.85 (±7.16), while the nineteen SMA type III scored 31.10 (±12.30) and 52.94 (±4.85). No significant difference was found when quality of life scores was compared among those groups.
On a self-reported scale it seems that regardless the functional status an SMA child and adolescent has a perception of good quality of life.
Characteristics and prospective two-year follow-up of children with pulmonary arterial hypertension in France
2010, Archives of Cardiovascular Diseases Supplements
Les données décrivant l’hypertension artérielle pulmonaire chez l’enfant sont peu nombreuses.
L’objectif a été de caractériser l’épidémiologie, la prise en charge, l’impact sur la qualité de vie et les conséquences de l’hypertension artérielle pulmonaire de l’enfant en excluant les patients avec une hypertension artérielle pulmonaire persistante du nouveau-né et ceux dont l’hypertension artérielle pulmonaire était causée par une cardiopathie congénitale.
Dans cette étude non interventionnelle multicentrique, des enfants atteints d’hypertension artérielle pulmonaire ont été inclus et suivis prospectivement pendant 2 ans dans 21 centres français. La classe fonctionnelle OMS, la distance de marche de 6 minutes, la qualité de vie (questionnaire CHQ-PF50), les paramètres hémodynamiques et les échodopplers réalisés ont été évalués.
Cinquante enfants d’âge moyen de 8,9 ± 5,4 ans ont été inclus de mai 2005 à juin 2006. La prévalence de l’hypertension artérielle pulmonaire a été estimée à 3,7 cas/million. Les patients avaient une hypertension artérielle pulmonaire idiopathique (60 %), familiale (10 %), associée avec une cardiopathie congénitale qui n’était pas la cause de l’hypertension artérielle pulmonaire (24 %), associée à une connectivite (4 %) ou à une hypertension portale (2 %). Pendant le suivi, le nombre d’associations de médicaments spécifiques de l’hypertension artérielle pulmonaire prescrit a augmenté (44 % des patients contre 22 % à l’inclusion). La majorité des patients est restée stable en ce qui concerne l’état clinique, le test de marche de 6 minutes et la qualité de vie. La survie à 1 et 2 ans a été estimée à 86 % (intervalle de confiance à 95 % : [76, 96]) et 82 % (95 % intervalle de confiance : [71, 93]).
Chez l’enfant, dans la majorité des cas, les hypertensions artérielles pulmonaires sont idiopathiques ou familiales. Un groupe spécifique d’hypertension artérielle pulmonaire concomitante d’une cardiopathie congénitale a été identifié et ressemble à une hypertension artérielle pulmonaire idiopathique. Les associations de traitements spécifiques de l’HTAP peuvent avoir contribué à la stabilité de la maladie et à une meilleure survie.
There is few data describing pulmonary arterial hypertension in children.
The objective was to describe the epidemiology and management of pulmonary arterial hypertension (PAH) in children, as well as its effects on the quality of life and its consequences, excluding patients with persistent pulmonary hypertension of the newborn and those with pulmonary arterial hypertension due to congenital heart disease.
This multicenter non interventional study included children with pulmonary arterial hypertension who were prospectively followed for two years in 21 French centres. The WHO functional classification, the 6-minute walk distance, the quality of life (CHQ-PF50 questionnaire), the hemodynamics parameters and echodoppler performed were evaluated.
Fifty children with a mean age of 8.9 ± 5.4 years were included from May 2005 to June 2006. The prevalence of pulmonary arterial hypertension was estimated at 3.7 cases per million. The patients had the following types of pulmonary arterial hypertension: idiopathic (60%), familial (10%), associated with congenital heart disease that was not the cause of the pulmonary hypertension (24%), associated with a connective-tissue disease (4%) or with portal hypertension (2%). During follow-up there was an increase in the number of drugs prescribed specifically for pulmonary arterial hypertension (44% patients versus 22% at inclusion). The clinical status, 6-minute walk test and quality of life of the majority of patients remained stable. The survival at one and at two years was estimated at 86% [95% confidence interval (76, 96)] and 82% [95% confidence interval (71, 93)].
The majority of cases of pulmonary arterial hypertension in children are idiopathic / familial. A specific group of pulmonary arterial hypertension occurring with congenital heart disease has been identified and resembles idiopathic pulmonary arterial hypertension. The use of specific treatments for PAH may contribute to the stability of the disease and to better survival.

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Enfant et sociétéÉvaluation de la qualité de vie en pédiatrie : comment recueillir le point de vue de l'enfantAssessment of quality of life in pediatrics: a questionnaire to assess the child's own opinion

Résumé

Summary

Assessing health-related quality of life for clinical decision making

Évaluation de la qualité de vie : mise au point d'un instrument d'évaluation dans un contexte francophone

Rev Eur Psychol Appliq

Quality of life assessment in therapeutic trials: rationale for presentation of a more appropriate instrument

Fundam Clin Pharmacol

Quality of life and pharmacoeconomics in clinical trials

La qualité de vie chez l'enfant

Pédiatrie

Play performance scale as an index of quality of life of children with cancer

Psychol Assess

Enfant et société
Évaluation de la qualité de vie en pédiatrie : comment recueillir le point de vue de l'enfantAssessment of quality of life in pediatrics: a questionnaire to assess the child's own opinion