Comparing longitudinal assessments of quality of life by patient and parent in newly diagnosed children with cancer: The value of both raters' perspectives

ArticleinQuality of Life Research 21(5):915-23 · August 2011with12 Reads
DOI: 10.1007/s11136-011-9986-4 · Source: PubMed
Health-related quality of life (HRQoL) information from children facing rare and/or life-threatening disease serves important clinical functions. Longitudinal HRQoL ratings from 222 child-parent dyads collected at four time points during the first 16 weeks of cancer treatment are presented. Patient and parent HRQoL reports at the domain level, based on the Pediatric Quality of Life Inventory™ 4.0 Generic Core Scales, were compared over time, and variation in child/parent agreement by age, treatment intensity, and time on treatment was explored. Analyses included consideration of missingness, differences between child and parent group mean domain scores averaged over assessments, agreement between individual child and parent, compared to group averages, and within-subject changes between assessments. Children consistently reported higher functioning than their parents with differences varying by child age and HRQoL domain and diminishing over time. No differences were found by intensity of treatment. The between-subject correlation ranged from 0.61 (social functioning) to 0.86 (physical functioning) across time. Agreement within groups, defined by age, treatment intensity, and time were generally similar. Results indicate moderate-to-good child/parent agreement with variability by domain of HRQoL. Findings underscore the complexity of self- and proxy-based report and support the use of information from both raters.
    • "Our findings suggest that: 1) children and adolescents with NCS display statistically significant agreement with their parents in terms of how they perceive their overall quality of life; levels of agreement increase with age for physical health but decline with age for psychosocial wellbeing; 2) agreement between patients' and parents' ratings was not predicted by the clinical and psychological variables analyzed in the study (for patients: gender, age, recurrent syncope, internalizing and externalizing problems; for parents: stress index); however, there were interesting correlations between psychological factors in both patients (internalizing problems) and in their parents (stress index) and parental perceptions of QoL; 3) finally, the predictive model that best explained parents' perceptions of the QoL enjoyed by their child comprised three factors: children's self-reported QoL, parental stress, and internalizing problems on the part of the children. With regard to the first of these findings, our data are in line with other studies that have found significant levels of agreement regarding QoL between parents and children suffering from a variety of pediatric illnesses [11]. They also support findings in the literature which show that, as children get older, the gap between their own self-perceptions and their parents' views tends to narrow [13] . "
    [Show abstract] [Hide abstract] ABSTRACT: Background: Health-related quality of life, which can be investigated using self-reports or parental reports, could help healthcare providers understand the subjective perception of well-being of children suffering from recurrent syncopal episodes. Quality of life is not only a measure of health but is also a reflection of patients' and parents' perceptions and expectations of health. This study assessed: 1) the consistency and agreement between pediatric patients' self-reports and parents' proxy-reports of their child's quality of life; 2) whether this patient-parent agreement is dependent on additional demographic and clinical or distress factors; 3) whether the parents' psychological distress influences children's and parents' responses to questionnaires on quality of life. Methods: One hundred and twenty-five Italian children aged 6-18 years old (Mean age 12.75, SD 2.73, 48 % female) and their parents completed the Pediatric Quality of Life inventory with self-reports and parent-proxy reports, the Parenting Stress Index - Short Form questionnaire and the Child Behavior Checklist for ages 6-18. Patients' and parents' scores on quality of life were analyzed via an intra-class correlation coefficient, Spearman's correlation coefficient, Wilcoxon signed-rank test, and Bland-Altman plot. Results: Child-rated quality of life was lower than parent-rated quality of life. However, there were no statistically significant differences between pediatric patients' self-reports and their parents' proxy-reports of on quality of life. Clinically significant patient-parent variation in pediatric health-related quality of life was observed. Differences in patient-parent proxy Pediatric Quality of Life inventory Total Scale Score scores were significantly associated with patient age. Conclusion: Concerning parents' proxy-ratings of their children's quality of life on the Pediatric Quality of Life inventory, parental stress was found to be negatively associated with their perceptions of their child's psychological quality of life. Indeed, childhood illness is a source of stress for the whole family, and exposes family members to a greater risk of developing psychosocial difficulties. In conclusion, this study invites reflection on the use of cross-informants in investigating the quality of life of young patients with neurocardiogenic syncope and the psychological factors that influence how quality of life is perceived.
    Full-text · Article · Dec 2016
    • "Nevertheless, good agreement between children and their parents may possibly reflect the ''observable'' nature of the items of the measures being used, even when the focus is on the same construct. For example, a comparison of two of the measures focusing on (HR)QoL in this review, the PedsQL [19][20][21]23,25,28,37,38,51] and the KIDSCREEN,[3,18,50] revealed that a majority of the items in the PedsQL are framed in a rather objective manner and thus concern what children can do, rather than how they feel. In contrast, the items in the KIDSCREEN are more subjective in nature. "
    [Show abstract] [Hide abstract] ABSTRACT: Purpose: To systematically review research concerning parent-child agreement in health-related assessments to reveal overall agreement, directions of agreement, and the factors that affect agreement in ratings. Method: The Uni-Search and five additional databases were searched. Children's health issues were grouped into psychosocial issues including autism and ADHD, and physical and performance issues including pain. Measures used for comparison were those addressing (a) psychosocial functioning, (b) physical and performance functioning, and (c) health-related quality of life. Results: Totally, 39 studies met the inclusion criteria, comprising 44 analyses in all since four studies contained more than one analyses. Moderate child-parent agreement was demonstrated in 23 analyses and poor agreement in 20 analyses. Several analyses found more agreement on observable/external than on non-observable/internal domains. Overall, parents considered their children had more difficulties than did the children themselves, although there were indications that for children with physical performance issues, parents may underreport their children's difficulties in emotional functioning and pain. There were no consistencies in differences between children's and parent's ratings on levels of agreement with respect to the children's health issue, age or gender. Conclusions: Discrepancies between child and parent reports seem to reflect their different perspectives and not merely inaccuracy or bias. Implications for Rehabilitation In general, parents consider their children to have more difficulties - or more extensive difficulties - than the children themselves think they have. The perspectives of the child and his or her parents should be sought whenever possible since both constitute important information concerning the child´s health and well-being. Children with physical and performance issues reported more difficulties than their parents concerning the children's emotional functioning and pain. Clinicians should prioritize obtaining children's views on subjective aspects such as emotional issues as well as on pain.
    Full-text · Article · Jun 2016
    • "So far, studies testing the association between intensity of treatment and HRQOL have shown contradictory results. Some found lower HRQOL in ALL patients during the most intensive phase of treatment [42] or found an association between treatment intensity and HRQOL 6 weeks after diagnosis [43], whereas others found no association [44, 45]. The heterogeneity of the sample, the low numbers of patients in the lowest and the highest category, and the classification of the ITR-3 into 4 broad categories, could possibly have influenced the relationship between treatment intensity and HRQOL. "
    [Show abstract] [Hide abstract] ABSTRACT: Malnutrition in childhood cancer patients has been associated with lower health-related quality of life (HRQOL). However, this association has never actually been tested. Therefore, we aimed to determine the association between nutritional status and HRQOL in children with cancer. In 104 children, aged 2-18 years and diagnosed with hematological, solid, or brain malignancies, nutritional status and HRQOL were assessed at diagnosis and at 3, 6, and 12 months using the child- and parent-report versions of the PedsQL 4.0 Generic scale and the PedsQL 3.0 Cancer Module. Scores on both scales range from 0 to 100. Undernourished children (body mass index (BMI) or fat-free mass < -2 standard deviation score (SDS)) reported significantly lower PedsQL scores compared with well-nourished children on the domains physical functioning (-13.3), social functioning (-7.0), cancer summary scale (-5.9), and nausea (-14.7). Overnourished children (BMI or fat mass >2 SDS) reported lower scores on emotional (-8.0) and cognitive functioning (-9.2) and on the cancer summary scale (-6.6), whereas parent-report scores were lower on social functioning (-7.5). Weight loss (>0.5 SDS) was associated with lower scores on physical functioning (-13.9 child-report and -10.7 parent-report), emotional (-7.4) and social functioning (-6.0) (child-report), pain (-11.6), and nausea (-7.8) (parent-report). Parents reported worse social functioning and more pain in children with weight gain (>0.5 SDS) compared with children with stable weight status. Undernutrition and weight loss were associated with worse physical and social functioning, whereas overnutrition and weight gain affected the emotional and social domains of HRQL. Interventions that improve nutritional status may contribute to enhanced health outcomes in children with cancer.
    Full-text · Article · Mar 2015
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