Background: Asthma exacerbations are a leading cause of school absenteeism and time lost from work, affecting the quality of life (QOL) of children with asthma and their caregivers. Objective: The objective of this study was to determine the relationship between measures of asthma severity and the QOL of children with asthma and their caregivers living in rural Saskatchewan. Methods: Data for this research was previously collected in 2005-2007 using a case-control study design. Children were recruited for the case control study following a cross-sectional school based survey of children aged 6-18 years. Cases with physician-diagnosed asthma (n=77) were then selected to examine associations between asthma severity and QOL, with respiratory information collected from a home visit, clinic visit and two-week home monitoring of diurnal peak flow variability (DPV). During the clinic visit, children underwent spirometry and completed the Pediatric Asthma QOL Questionnaire (PAQLQ). During the home visit, parents completed the Child Health Questionnaire (CHQ-PF50) and the Pediatric Asthma Caregiver QOL Questionnaire (PACQLQ) and were given instructions on how to complete the two-week diurnal peak flow home monitoring. Higher mean scores on measures of QOL questionnaires indicated better QOL. Asthma severity was measured by Forced Vital Capacity (FVC), Forced Expiratory Volume in one Second (FEV1), and mean DPV. Linear regression was used to assess the association between the three QOL measures and measures of asthma severity (mean diurnal peak flow variability and percent predicted lung function adjusting for smoking, parental education and asthma medication use in the last 12 months). Results: The lowest QOL score on the PAQLQ completed by the children was being bothered by physical activity (mean = 5.8, standard deviation = 1.19) whereas the lowest mean score on the PACQLQ completed by parents was feeling helpless or frightened (mean = 6.1, standard deviation = 1.28). No significant relationships were found between QOL scales. When the PACQLQ and the PAQLQ were stratified by age groups, parents reported higher mean scores for children in the 13-17 age group (p = 0.01) on the total score of the PACQLQ and activity and emotional subscales (p = 0.003 and 0.03, respectively). No significant correlations were found between spirometry measurements and the three QOL measures. Significant negative correlations were found between mean DPV and the mean PAQLQ Total Score. In a post hoc analysis, examining minimum morning peak flow expressed as percent recent best and QOL, significant positive correlations were found between the minimum morning peak flow measurements and the mean PAQLQ Total Score and Activity subscale. Conclusions: While findings from this study suggest that the CHQ-PF50 could be used to assess emotional aspects of QOL in children with asthma, overall, it may not be a useful tool in assessing the QOL of children with asthma. Peak flow may be a better measure of asthma severity than spirometry when assessing QOL for children with asthma and their parents.

The objectives of the study were to evaluate the psychometric properties of Child Health Questionnaire (CHQ-PF50), Brazilian version, in children and adolescents with cerebral palsy (CP) and the health-related quality of life (HRQL) in this group against those of healthy people, considering the clinical types, severity of motor involvement and presence of epilepsy. The parents or guardians of children and adolescents 5 to 18 years old, with CP classified as spastic, extrapyramidal or ataxic, seen at AACD-MG, were asked to answer the CHQ-PF50 by self-administered technique, between December 2003 and April 2004. The scores were compared with those of healthy people and according to clinical types, severity of motor involvement and presence of epilepsy. The motor function was evaluated through the Gross Motor Function Measure. The motor severity was classified as mild, moderate and severe according to Gross Motor Function Classification System. The following psychometric properties were studied: missing data, floor effect, ceiling effect, item internal consistency, internal consistency reliability, item discriminant validity, discriminant validity, convergent validity, divergent validity, criterion validity, concurrent validity and construct validity. Ninety six parents or guardians answered the questionnaire. The patients age ranged from 5 to 17.9 years old (mean: 9.3). Psychometric properties were considered adequate. Patients scored significantly lower than healthy population in almost all scales, except on change on health, with large effect size in the summary of physical scores (4.4) and psychosocial scores (1.8). Summary of physical scores were significantly lower in quadriplegic patients, in severe form or in presence of epilepsy. There were no significant differences in the summary of psychosocial scores according to clinical types, severity level and presence of epilepsy. The results showed that CHQ-PF50 Brazilian version have adequate psychometric properties to be applied in patients with CP. By caregivers perception, CP had an important negative impact on HRQL in children and adolescents including physical, emotional and social well-being of patient and their families. The repercussion on physical construct is greater in quadriplegic patients, with severe form of CP or with epilepsy. / O estudo teve como objetivo avaliar as propriedades psicométricas da versão brasileira do Child Health Questionnaire (CHQ-PF50) para crianças e adolescentes com Paralisia Cerebral (PC) e a qualidade de vida relacionada à saúde (QVRS) dessa população em relação aos seus controles saudáveis, aos diversos tipos de comprometimento motor e à presença de epilepsia. Representantes de crianças e adolescentes com idade entre 5 e 18 anos, com diagnóstico de PC do tipo espástico, extrapiramidal ou atáxico, em acompanhamento na AACD-MG, foram solicitados a responder o CHQ-PF50 através da técnica de auto-aplicação, durante o período de dezembro de 2003 a abril de 2004. Os escores obtidos foram comparados com os da população saudável e segundo os tipos clínicos, a gravidade do comprometimento motor e a presença de epilepsia. A função motora foi avaliada pelo Gross Motor Function Measure. O comprometimento motor foi classificado em leve, moderado e grave, conforme o nível funcional estabelecido pelo Gross Motor Function Classification System. As propriedades psicométricas foram avaliadas através da proporção de dados perdidos, efeito piso, efeito teto, consistência interna do item, confiabilidade da consistência interna, validade discriminante do item, validade discriminante, validade convergente, validade divergente, validade de critério, validade concorrente e validade de construto. Noventa e seis representantes responderam ao questionário. A idade dos pacientes variou de 5,0 a 17,9 anos (média: 9,3). As propriedades psicométricas avaliadas foram consideradas adequadas como um todo. As médias dos escores obtidos pelos pacientes foram significativamente menores que as da população saudável em todas as escalas, exceto na alteração de saúde, com tamanho do efeito grande no sumário do escore físico (4,4) e psicossocial (1,8). A média do escore pelo sumário físico foi significativamente menor no grupo com tetraparesia, nos pacientes com a forma grave e na presença de epilepsia. Não ocorreram diferenças significativas pelo sumário do escore psicossocial na comparação entre os pacientes segundo o tipo clínico, nível de gravidade e presença de epilepsia. Os resultados confirmam que a versão brasileira do CHQ-PF50 apresenta propriedades psicométricas adequadas para a sua utilização em pacientes com PC. A PC teve um importante impacto negativo na QVRS da criança e adolescente, incluindo o bem-estar físico, emocional e social, pela percepção do responsável. A repercussão no domínio físico foi maior nos indivíduos com tetraparesia, forma grave ou epilepsia. / Mestre em Ciências da Saúde