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

The Health Institute, Institute for Clinical Research and Health Policy Studies, Tufts Medical Center, 800 Washington St., Boston, MA 02111, USA.
Quality of Life Research (Impact Factor: 2.49). 08/2011; 21(5):915-23. 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.

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    • "Information variance could occur when the parent and child receive different information about clinical events, while criterion variance could occur when they weigh and respond to available information differently. These rater differences illustrate the importance of collecting pediatric HRQL data from both the parent and the child [20]. In addition, we found that fathers rated their adolescent child’s global HRQL higher than mothers. "
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    ABSTRACT: Background Pediatric health-related quality of life (HRQL) measures explore multiple domains of HRQL. To ease administration, burden, and implementation, we created a 7-item unidimensional global HRQL scale for children. This paper evaluates the psychometric properties of the global HRQL scale in children undergoing hematopoietic stem cell transplant (HSCT) and describes the trajectory of global HRQL scores over the 12-month course following HSCT. Methods As part of two longitudinal HSCT studies, HRQL was collected on 312 parent–child dyads using the Child Health Ratings Inventories. Parents of children aged 5–18 completed the pediatric global HRQL scale about their child and 117 adolescents completed the scale themselves. Psychometric properties were compared across both raters. Two repeated measures models were built to describe trajectories of (1) global HRQL for all children based on parent proxy report and (2) global HRQL for adolescents based on adolescent self-report and parent proxy report. Results Internal consistency reliability was high for parent proxy report and adolescent self-report (Cronbach’s alpha 0.9, 0.8, respectively). Unidimensionality was verified using principal components analysis. Both models indicated decreased global HRQL in the presence of early complications related to HSCT and Model 1 further indicated decreased HRQL in the presence of later complications. Model 2 showed that parent proxies reported lower global HRQL scores than adolescent self-report. Conclusions This study has demonstrated the unidimensionality and strong psychometric properties of a 7-item global HRQL scale in a sample of children undergoing HSCT. Despite its brevity, scale scores vary in clinically meaningful ways. Future applications of this scale are encouraged.
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    ABSTRACT: Little is known regarding the health-related quality of life (HRQL) trajectory of children with sickle cell disease or thalassemia ("hemoglobinopathies") following hematopoietic stem cell transplantation (HSCT). We serially evaluated the HRQL of 13 children with hemoglobinopathies who received HSCT during two prospective multi-center studies using the Child Health Ratings Inventories (CHRIs). The HRQL scores among children with hemoglobinopathies, as reported separately by the children and their parents were compared using repeated measures models to scores of a comparison group of children receiving HSCT for malignancies or severe aplastic anemia. The sample included 13 children with hemoglobinopathies (median age: 8 years, range 5-18) and 268 children in the comparison group (median age: 11 years, range 5-18). There were similar rates of early infection, chronic graft versus host disease, and all-cause mortality between the two groups. There was no significant difference in recovery to baseline scores for physical, emotional, and role functioning by 3 months for either group. Children with hemoglobinopathies had higher HRQL scores for physical (beta = 12, se = 5.5, P = 0.01) and baseline emotional functioning (beta = 11.6, se = 5.5, P = 0.03) than the comparison group. For all domains for both groups, parent reports demonstrated a nadir at 45 days with recovery to baseline by 3 months following transplant. Children's ratings were higher than those of their parents in both diagnostic groups. Children with hemoglobinopathies had higher physical and emotional functioning scores prior to HSCT and experienced a similar pattern of recovery to their baseline functioning by 3 months post-HSCT when compared to children receiving HSCT for acquired conditions.
    No preview · Article · Oct 2012 · Pediatric Blood & Cancer
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    ABSTRACT: Introduction: Although much is asked clinically and emotionally of children and adolescents who are receiving treatment for a life-threatening illness, they are not routinely asked how they experience the treatment that is intended to save or prolong their lives. Without their subjective reports (the 'child's voice'), the treatment risk/benefit ratio cannot be fully known. Our purpose is to offer a description of the term 'child's voice' and to describe methods used to solicit and validate the ill child's reports of treatmentrelated symptoms and quality of life during palliative or end-of-life care. Methods: Study methods included a targeted literature review from three literature databases to develop the description of the 'child's voice' and to provide evidence regarding the ability of children with cancer to give voice to their treatment experience. Results: Many children ages 5-7 years and most children 8 years of age and older in treatment for cancer or receiving end-of-life care were able to validly report their symptoms, treatment experiences, and quality of life through qualitative and quantitative measures. Discussion: Although relevant literature is limited, research findings indicate that a majority of ill children and adolescents are able to report on their treatment-related symptoms and quality of life. The absence of the child's voice in palliative and end-of-life care jeopardizes best care efforts. We believe that seeking the ill child's voice in palliative and end-of-life care should now be standard of care.
    No preview · Article · Dec 2012 · Progress in Palliative Care
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