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Background and Objectives: Quality of life measurements can help to estimate the well-being of chronically ill patients, and disclose discrepancies in perception between physicians and patients that might otherwise interfere with the effectiveness of treatment. The objective was to investigate the differences in perception of quality of life between parents of chronically ill children and pediatricians., Methods: A cross-sectional study was conducted in four tertiary pediatric care centers in The Netherlands. The Health Utilities Index mark 3 (HUI3) was used by 37 pediatricians and 279 parents of patients (children aged 1 to 17 years) with cystic fibrosis admitted either in daycare or for a pneumonia, or patients with newly diagnosed acute lymphoblastic leukemia, juvenile idiopathic arthritis, or asthma., Results: Differences in perception of quality of life between parents and pediatricians appeared to be dependent of the disease. In patients with acute lymphoblastic leukemia (OR 7.4; [95% CI 2.88-18.97], juvenile idiopathic arthritis (4.7; [95% CI 2.00-11.22]), and asthma (2.3; [95% CI 1.13-4.69]) a difference in perception was more likely to occur than in patients with cystic fibrosis admitted in daycare., Conclusion: At the onset of a chronic disease, the parents of pediatric patients may be misunderstood by health care professionals, especially in subjective attributes. Assessment of quality of life may contribute to better understanding between pediatricians and parents, and thus may even enhance compliance and treatment effects.

Objective: In addition to traditional clinical markers, quality-of-life assessment can be helpful to estimate the well-being of patients. Discrepancies in perception of well-being between physicians and patients may interfere with the effectiveness of treatment. A systematic review and meta-analysis were performed to explore the (dis-)agreement in quality-of-life assessments between patients and physicians., Study Design and Setting: Data on the proportion agreement of paired observations were collected from Medline, Embase, Psychlit, and Social Abstracts., Results: Of the 1,316 articles found, six met the selection criteria, four studied the proportion agreement between children and physicians, and all six the proportion agreement between parents and physicians. None examined the magnitude of over- or underestimation by physicians. The agreement was lower in the more subjective domains (0.54-0.77) in comparison to the more objective domains (0.79-0.94)., Conclusion: Quality-of-life assessment should be integrated in clinical practice. During long-term treatment the perception of the patients' well-being by physicians and patients themselves can easily diverge from each other, resulting in misunderstandings about the treatment and its usefulness in relation to perceived quality of life, and may even become the base for noncompliance.

Unlabelled: This study assesses the feasibility, reliability and validity of the Child Health Questionnaire-Parent Form (CHQ-PF50), consisting of 11 multi-item scales covering the physical, emotional and social well-being of children. The Health Utilities Index mark 2 (HUI2) was selected for comparison. Parents of 467 Dutch schoolchildren (age 5-13) were sent CHQ and HUI questionnaires. A subgroup of 79 parents of children aged 10-11 were sent a retest after 2 weeks. Feasibility: 78% response with few missing/non-unique CHQ-answers (<1%). Internal consistency: Cronbach's alphas of.39-.96 (mean.72). Item-own scale correlations were higher than item-other scale correlations. Test-retest ICCs were statistically significant for all but two CHQ scales (ICCs.31-.84). Test-retest CHQ-scale means did not show statistically significant differences except for one scale ("Behavior")., Validity: the CHQ-scales, with one exception, correlated better with predefined parallel HUI domains (ICCs.26-.53), than with non-parallel domains. Six CHQ scales discriminated clearly between children with and without chronic conditions and three scales discriminated between high and low medical consumption. This was at least equivalent to the discriminative ability of the HUI2 in this study. Additional studies of test-retest reliability and responsiveness to change of the CHQ in varied populations are needed. From the present study and literature data on other (clinical) populations we conclude that psychometric properties of CHQ-based health status measurement justify application in pediatric outcome studies, in addition to clinical measures.

The aim of this study was to evaluate interrater and intermodality agreement in assessing health status using the Health Utilities Index. A random sample from a Dutch cohort of 14-year-old Very Low Birth Weight children and their parents were invited to participate in a face-to-face (n = 150) or telephone (n = 150) interview. All 300 participants were also sent a questionnaire by mail. Response rate was 68%. Interrater and intermodality agreement were high for the physical HUI3 attributes and poor for the psychological attributes. Children and parents reported more dysfunction in the psychological attributes when interviewed than when completing the mailed questionnaire. High agreement on the physical attributes may have resulted from the fact that hardly any dysfunction was reported in these attributes, and poor agreement in the psychological attributes may have been a result of the fact that in these attributes much more dysfunction was reported. In measuring children's health status using the HUI3, the results and their interpretation vary with the source of information and the modality of administration. For maximum comparability between studies, written self-report questionnaires seem the preferred option.

This study assesses psychometric and empirical characteristics of the Multi-Attribute Health Status Classification (MAHSC) in a heterogeneous population of children admitted to intensive care. The MAHSC encompasses six health domains (sensation, mobility, emotion, cognition, self-care, and pain), each with four or five hierarchic levels of dysfunction. The health status of 254 consecutively admitted children was determined independently by 3 different observers (parents, attending clinicians, and investigators). The proportion of children with health impairment varied between 13% (in sensation) and 58.7% (in mobility). Interrater reliability of domain scores, as analyzed by Spearman's rank, Pearson product moment, and intraclass correlations, was high, generally exceeding 0.80 for all pairs of observers. Intraclass correlation appeared to be highest in nonsurgical patients (range, 0.89-0.98) and lowest in cardiovascular surgery patients (range, 0.50-0.84). The validity of the classification was supported by (1) the presence of expected specific health status impairment in patient suffering from diseases with an acknowledged impact on specific domains and (2) the presence of a relation between health impairment and medical consumption. The absence of a relation between the average (chronic) health status preceding admission and the acute risk of mortality precipitating the admission confirmed their independent prominence in outcome assessment. We conclude that the MAHSC is a feasible, reliable, and valid measure for outcome assessment in a heterogeneous population of children within a demanding clinical situation. Excellent interrater reliability allows the use of various raters, adjusted to practical requirements.