Quality of life among children with cancer: agreement between child and parent reports (original) (raw)
Related papers
International Journal of Cancer, 1999
Because there were limited measures available to assess health-related quality of life (HRQL) in children with chronic illnesses, this study was initiated to develop an empirically derived questionnaire for use in evaluating HRQL issues in children treated for cancer. Extensive interviews were conducted with 30 families of children with cancer, 10 of preschool age, 10 of school age and 10 of adolescent age. Responses were videotaped and transcribed, then categorized to develop a pool of 56 items, which were administered to 132 children with cancer and to their parents. This report focuses on parental responses to objective items and ratings of importance of each of these items. Three primary categories, Self-Competence, Emotional Stability and Social Competence, were identified, each of which had solid internal consistency, sensitivity and reliability across 1-month intervals. The measure demonstrated the ability to discriminate between children with different types of cancer, offers an alternative to measures relying on expert judgment to assess HRQL and may lead to greater inclusion of psychological and social concerns as primary factors in determining HRQL in children participating in clinical trials.
Cancer in childhood: Children's and parents’ aspects for quality of life
European Journal of Oncology Nursing, 2008
Introduction: The aim of the present study is to (a) describe the level of agreement between reports of health-related quality of life (HRQL) obtained from parents and young patients both on-and off-treatment and (b) explore the factors that may affect the level of agreement in the quality of life (QoL) between young patients and parental proxies. Patients and methods: The study group consisted of 149 young patients (77 children and 72 adolescents) with cancer followed up by an oncology in-patient clinic of a Greek children's hospital with one of their parents (n ¼ 298). After parental consent was obtained, data were collected using the Pediatric Quality of Life Inventory (PedsQL) and a sociodemographic data form. Results: The data collection showed that the best agreement was for the physical (ICC ¼ 0.82) and the school domains (ICC ¼ 0.68), whereas the worst was for the emotional (ICC ¼ 0.48) and the social domains (ICC ¼ 0.52). In the off-treatment group, the mother's age was a significant predictor of the child-proxy difference on the physical sub-scale (F ¼ 9.804, P ¼ 0.003). There was a negative relationship between the mother's age and patient proxy difference on the physical sub-scale. In the on-treatment group, the educational level of the father was found to be a significant predictor for the physical (F ¼ 4.30, P ¼ 0.041), school (F ¼ 5.51, P ¼ 0.022) and total sub-scales (F ¼ 10.41, P ¼ 0.002). Parents with basic education tended to have worse agreement with their children's reports on the physical and school sub-scales, while parents with higher education had worse agreement with their children's reports on the total sub-scale. Conclusions: Our findings suggest that the children and adolescents with cancer reported better QoL than their parents. The predictors found to be significant need to be examined extensively by further studies.
Journal of Pediatric Hematology Oncology, 2006
Background: External fixator treatment (EFT) of lower limb deformities is expected to optimize gait and physical appearance, which might improve the child's health-related quality of life (HRQOL). Although EFT can impose a significant psychologic burden on the children and their families, there is a lack of studies on the HRQOL of children undergoing EFT. The purpose of this paper is to determine the construct validity and the responsiveness of the Pediatric Quality of Life Inventory (PedsQL) generic module in children with lower limb deformities undergoing EFT and to describe the use of other outcome measures in this population. Methods: Fifty-two children (mean age: 13.0 y, SD: 4.2) who enrolled in the pilot phase of a randomized controlled trial to examine the safety and efficacy of botulinum toxin type A injections in children undergoing EFT of the lower limb were included in this study. Pain and functional mobility were measured at baseline. HRQOL was assessed with the child selfreport and parent proxy-report formats of the Pediatric Quality of Life Inventory 4.0 Generic Core Scales (PedsQL) at baseline, at mid-distraction, mid-consolidation, 1-week post-frame removal, and 3 months post-frame removal time points. The known groups method was used to measure the construct validity of the PedsQL; paired t tests, Cohen's d estimate of effect size (ES) and standardized response mean were used to calculate its responsiveness. Results: Children and parents reported significantly lower HRQOL scores on all PedsQL domains compared with norms. ES and standardized response mean calculations both show largest amounts of change in the Physical Health domain, with children and parents reporting worse HRQOL at mid-distraction than at baseline. The PedsQL shows statistically significant changes only in the emotional functioning score of the child
Health and Quality of Life Outcomes, 2008
Background: The use of health-related quality of life (HRQOL) measurements has been increased progressively in health surveys. These measurements document the functional and psychosocial outcomes of health conditions and complement clinical indicators to provide a comprehensive description of individuals and populations' health. The Pediatric Quality of Life Inventory™ (PedsQL™) is a promising instrument with age-appropriate versions. The objective of the current paper was to evaluate the psychometric properties of the PedsQL™ 3.0 Cancer Module cross-culturally adapted for use in Brazil. Methods: A cross-sectional study was developed with 190 Brazilian families of individuals from 2 to 18 years of age, of both genders, with cancer in various phases of treatment or control. Subjects were recruited by means of convenience samples from the Pediatric Hematology/Oncology Centers at two public hospitals. 'In-treatment' status was defined as individuals who were receiving medical care to induce remission. 'Off-treatment' status was defined as individuals for whom all therapy was completed for a period of at least one month. Reliability was determined through test-retest reliability and internal consistency. The validity of the Cancer Module was determined through discriminant and convergent validity. Correlations between the scores obtained by the children/adolescents with cancer and their guardians were assessed. Results: Test-retest reliability demonstrated good correlation (0.69-0.90 for children/adolescents; 0.71-0.93 for guardians) and adequate agreement of the items (0.26-0.85 for children/adolescents; 0.25-0.87 for guardians). Internal consistency demonstrated adequate indices in comparisons between groups (α = 0.78-0.80 for children and adolescents; 0.68-0.88 for guardians). The 'pain and hurt', 'nausea', 'procedural anxiety' and 'treatment anxiety' subscales proved capable of distinguishing the groups of children in treatment and off treatment (p < 0.05). Positive significant correlations were observed between the scores of the PedsQL™ 3.0 Cancer Module and the PedsQL™ 4.0 Generic Core scales. Weak correlations were found between the reports of the children and those of the guardians. Conclusion: The Brazilian version of the PedsQL™ 3.0 Cancer Module exhibited good measurement properties regarding reproducibility and construct validity.
Supportive Care in Cancer Official Journal of the Multinational Association of Supportive Care in Cancer, 2011
Purpose This paper describes a systematic review conducted to identify factors that have been investigated as explanations of variability in the quality of life of children with cancer and childhood cancer survivors. Our purpose was to build an evidence base that could be used to guide and direct future research. Methods MEDLINE, CINAHL, EMBASE, PsycINFO, Cancerlit, and Sociological Abstracts were searched from the inception of each database to June 15, 2009 using the following search terms: "quality of life," "health-related quality of life," "quality adjusted life years," "health status," "functional status," "well-being," or "patientreported outcome." Sample characteristics and information about the relationship between a quality of life domain or total scale score and at least one factor (e.g., child gender or age, coping skills, family income) were extracted from eligible studies. Results Nine cancer-specific and nine generic QOL questionnaires were used in 58 publications described 239 factors (50 unique factors). The large number of cancer, treatment, child, and family variables considered indicates that extensive research activity has occurred. However, most of the variables identified were examined in only a few studies and most represent medical and treatment variables with less research attention paid to child and family variables. Conclusions Our study has compiled evidence about determinants of QOL for children with cancer and childhood cancer survivors from the existing literature. Future research can build on this evidence base to expand the range of factors studied as most research to date has focused on medical and treatment factors.
Quality of Life Research, 2014
Objectives An appraisal of pediatric cancer-specific quality-of-life (QOL) instruments revealed a lack of clarity about what constitutes QOL in this population. This study addresses this concern by identifying the concepts that underpin the construct of QOL as determined by a content analysis of all patient-reported outcome (PRO) instruments used in childhood cancer research. Methods A systematic review was performed of key databases (i.e., MEDLINE, CINAHL, PsychINFO) to identify studies of QOL in children with cancer. A content analysis process was used to code and categorize all items from generic and cancer-specified PRO instruments. Our objective was to provide clarification regarding the conceptual underpinnings of these instruments, as well as to help inform the development of theory and contribute to building a conceptual framework of QOL for children with cancer. Results A total of 6,013 English language articles were screened, identifying 148 studies. Ten generic and ten cancer-specific PRO instruments provided 957 items. Content analysis led to the identification of four major domains of QOL (physical, psychological, social, and general health), with 11 subdomains covering 98 different concepts. While all instruments reflected items relating to the broader domains of QOL, there was substantial heterogeneity in terms of the content and variability in the distribution of items. Conclusions This systematic review and the proposed model represent a useful starting point in the critical appraisal of the conceptual underpinnings of PRO instruments used in pediatric oncology and contribute to the need to place such tools under a critical, yet reflective and analytical lens.
Quality of life as conveyed by pediatric patients with cancer
Quality of Life Research, 2000
Quality-of-life instruments have provided important advances in measuring the quality of life of pediatric patients receiving treatment for cancer. However, the bases of these instruments have not included firsthand reports from the patients; thus, these instruments may be conceptually incomplete. We directly solicited from pediatric patients their perspectives regarding their quality of life during treatment for cancer. We conducted two pilot studies: 23 patients (aged 8-15 years) participated in the first, a crosssectional study; and 13 patients (aged 10-18 years) participated in the second, a 2-year longitudinal study. Data were analyzed by using a semantic-content method, and the following six domains were recognized in data from both of the studies: symptoms, usual activities, social/family interactions, health status, mood, and the meaning of being ill. These domains were compared with those of seven established pediatric oncology quality-of-life instruments, none of which included all six of these domains; the domain most frequently missing was the meaning of being ill domain. Here we present a new definition of the quality of life of pediatric oncology patients that is based on six domains; this definition may ensure the completeness and sensitivity of these important instruments.
Cancers
Objectives: To describe the self-reported health problems and quality of life among adult-aged Colombian childhood and adolescent cancer survivors. Methods: This is a descriptive cross-sectional study with Colombian childhood cancer survivors (CCS) who were diagnosed before the age of 18, at the moment of study were ≥18 years, and at least 5 years had passed since diagnosis. Each participant completed a self-reported study-specific online questionnaire along with the SF-36 Health Survey to assess the prevalence of health problems and current quality of life (QoL). Data were analyzed using descriptive statistics and independent sample t-tests. Results: Out of the 122 CCS who participated, 100% reported at least one health problem, mostly gastritis, headaches, and lack of concentration, followed by obesity and fertility issues. In general, they had a good perception of their QoL, which was, on average, only diminished in the areas of vitality, emotional role functioning, and social fu...