To evaluate feasibility, internal consistency, test–retest reliability, and concurrent and discriminative validity of the Infant and Toddler Quality of Life Questionnaire (ITQOL) for parents of pre-school children with 12 scales (103-items) covering physical and psychosocial domains and impact of child health on parents, in comparison with the TNO-AZL Pre-school Children Quality of Life Questionnaire (TAPQOL).
Parents of children from a random general population sample (2 months–4 years old; n = 500) and of an outpatient clinic sample of children with respiratory disease (5 months–5 1/2 years old; n = 217) were mailed ITQOL and TAPQOL questionnaires; a retest was sent after two weeks.
Feasibility: The response was ≥80% with few missing and non-unique ITQOL-answers (<2%) in both study populations. Some ITQOL-scales (3–4 scales) showed a ceiling effect (>25% at maximum score). Internal consistency: All Cronbach’s α >0.70. Test–retest Intraclass Correlation Coefficients (ICCs) were moderate or adequate (≥0.50; p lt; 0.01) for 10 ITQOL-scales. Validity: ITQOL-scales, with a few exceptions, correlated better with predefined parallel TAPQOL scales than with non-parallel scales. Five to eight ITQOL-scales discriminated clearly between children with few and with many parent-reported chronic conditions, between children with and without doctor-diagnosed respiratory disease and with a low and a high parent-reported medical consumption (p <0.05).
This study supported the evidence that the ITQOL is a feasible instrument with adequate psychometric properties. The study provided reference ITQOL scores for gender/age subgroups. We recommend repeated evaluations of the ITQOL in varied populations, especially among very young children, including repeated assessments of test–retest characteristics and evaluations of responsiveness to change. We recommend developing and evaluating a shortened ITQOL version.
Asthma; General population; Health-related quality of life; Infant and Toddler Quality of Life Questionnaire (ITQOL); Pre-school children; Reference/norm scores; Reliability; TNO-AZL Pre-school Children Quality of Life Questionnaire (TAPQOL); Validity
Improved survival in children with critical illnesses has led to new disease patterns. As a consequence evaluation of the well being of survivors of Pediatric Intensive Care Units (PICU) has become important. Outcome assessment should therefore consist of evaluation of morbidity, functional health and Health Related Quality of Life (HRQoL). Awareness of HRQoL consequences and physical sequelae could lead to changes in support during the acute phase and thereafter. The aim of this study was to evaluate HRQoL in PICU survivors.
Prospective follow-up study three and nine months after discharge from a 14-bed tertiary PICU. Eighty-one of 142 eligible, previously healthy children were included from December 2002 through October 2005. HRQoL was assessed with the TNO-AZL Preschool Children Quality of Life Questionnaire (TAPQOL-PF) for children aged 1 to 6 years of age, the TNO-AZL Children's Quality of Life Questionnaire Parent Form (TACQOL-PF) for children aged 6 to 12 years of age, and the TNO-AZL Children's Quality of Life Questionnaire Child Form (TACQOL-CF) for children aged 8 to 15 years of age. The studied patients were compared with age appropriate normative data using non-parametric tests and effect sizes.
Thirty-one and 27 children, and 55 and 50 parents completed questionnaires respectively three and nine months after discharge. In 1–6 year old children parents reported more lung problems (3 and 9 months), worse liveliness (9 months) and better appetite and problem behaviour (3 months); in 6–12 year old children parents reported worse motor functioning (3 months); and 12–15 year old adolescents reported worse motor functioning (3 months). Large effect sizes indicating clinical significant differences in HRQoL with healthy control subjects were found on more domains.
In this small group of PICU survivors differences in HRQoL with the normative population exist three and nine months after discharge. Calculated effect sizes were smaller nine months after discharge. These changes suggest that HRQoL improves over time. More research is necessary but we believe that HRQoL assessment should be incorporated in follow-up programs of PICU survivors.
Background: Constipation and encopresis frequently cause problems with respect to emotional wellbeing, and social and family life. Instruments to measure Health Related Quality of Life (HRQoL) in these disorders are not available.
Methods: A disease specific HRQoL instrument, the "Defecation Disorder List" (DDL) for children with constipation or functional non-retentive faecal soiling (FNRFS) was developed using accepted guidelines. For each phase of the process, different samples of patients were used. The final phase of development included 27 children. Reliability was assessed in two ways: internal consistency of domains with Cronbach's alpha, and test-retest reliability with intra-class correlation coefficients (ICC). To assess validity, comparable items and domains were correlated with Tacqol, a generic HRQoL instrument for children (TNO-AZL).
Results: In the final phase of the development, 27 children completed the instrument. It consisted of 37 items in four domains. The response rate was 96%. Reliability was good for all domains, with Cronbach's alpha values ranging from 0.61 to 0.76. Measures of test-retest stability were good for all four domains with ICCs ranging from 0.82 to 0.92. Validity based on comparison with the Tacqol instrument was moderate.
Conclusion: The DDL is promising as a measure of HRQoL in childhood defecation disorders.
Children with Down syndrome (DS) have delayed psychomotor development. We investigated levels of development, problem behavior, and Health-Related Quality of Life (HRQoL) in a population sample of Dutch eight-year-old children with DS. Developmental outcomes were compared with normative data of eight-year-old children from the general population.
Over a three-year-period all parents with an eight-year-old child with DS were approached by the national parent organization. Developmental skills were assessed by means of the McCarthy Scales of Children's Ability. To measure emotional and behavioral problems we used the Child Behavior Checklist. HRQoL was assessed with the TNO-AZL Children's Quality of Life questionnaire. Analyses of variance were applied to compare groups.
A total of 337 children participated. Mean developmental age was substantially lower than mean calendar age (3.9 years, SD 0.87 and 8.1 years, SD 0.15 respectively). Mean developmental age was significantly lower among boys than girls (3.6 (SD 0.85) and 4.2 years (SD 0.82) respectively; p<0.001). Compared with the general population, children with DS had more emotional and behavioral problems (p<0.001). However on the anxious/depressed scale, they scored significantly more favorably (p<0.001). Significantly lower HRQoL scores for the scales gross motor skills, autonomy, social functioning and cognitive functioning were found (p-values<0.001). Hardly any differences were observed for the scales physical complaints, positive and negative emotions.
Eight-year-old children with DS have an average developmental delay of four years, more often have emotional and behavioral problems, and have a less favorable HRQoL compared with children from the general population.
Aims: To examine short term and long term health related quality of life (HRQoL) of survivors of congenital anorectal malformations (ARM) and congenital diaphragmatic hernia (CDH), and to compare these patients' HRQoL with that of the general population.
Methods: HRQoL was measured in 286 ARM patients and 111 CDH patients. All patients were administered a symptom checklist and a generic HRQoL measure. For the youngest children (aged 1–4) the TAIQOL (a preliminary version of the TAPQOL) was used, for the other children (aged 5–15) the TACQOL questionnaire, and for adults (aged >16) the SF-36.
Results: As appeared from the symptom checklists, many patients remained symptomatic into adulthood. In the youngest ARM patients (aged 1–4 years), generic HRQoL was severely affected, but the older ARM patients showed better HRQoL. In the CDH patients, the influence of symptoms on HRQoL seemed less profound. The instruments we used revealed little difference between adults treated for ARM or CDH and the general population.
Conclusions: These results show that for two neonatal surgical procedures, improved survival does not come at the expense of poor HRQoL in adults. Even though there is considerable suffering in terms of both morbidity and mortality in the youngest group, the ultimate prognosis of survivors of the two studied congenital malformations is favourable. This finding can be used to reassure parents of patients in need of neonatal surgery for one of these conditions about the prospects for their child.
In this study the reliability and validity of generic and disease-specific questionnaires has been assessed focusing on responsiveness. This is part of a study on the effects of recurrent acute otitis media (rAOM) on functional health status (FHS) and health-related quality of life (HRQoL) in 383 children with rAOM participating in a randomized clinical trial. The following generic questionnaires were studied: 1. RAND general health rating index, 2. Functional Status Questionnaire (FSQ Generic and FSQ Specific), 3. TNO-AZL Infant Quality of Life (TAIQOL), and the following disease-specific questionnaires: 1. Otitis Media-6 (OM-6), 2. Numerical rating scales (NRS) for child and caregiver (NRS Child and NRS Caregiver), and 3. a new Family Functioning Questionnaire (FFQ). Reliability was good to excellent (Cronbach’s α range 0.80–0.90, intraclass correlation coefficient range 0.76–0.93). Moderate to strong correlations were found between the questionnaires as well as between questionnaires and relevant clinical indicators (r = 0.29–0.49), demonstrating construct validity. Discriminant validity for children with few versus frequent episodes of acute otitis media per year was good for most questionnaires (P < 0.004) but poor for the otitis media-related subscales of the TAIQOL (P = 0.10–0.97) and both NRS (P = 0.22 and 0.48). Except for the TAIQOL subscales, change scores were significant (P < 0.003) for generic and disease-specific questionnaires. Effect sizes were somewhat higher for disease-specific compared to generic questionnaires (0.55–0.95 versus 0.32–0.60) except for the TAIQOL subscales, which showed very poor sensitivity to change. Anchor-based methods resulted in a somewhat larger range of estimates of MCID than distribution-based methods. Combining distribution-based and anchor-based methods resulted in similar ranges for the minimally clinical important differences for generic and disease-specific questionnaires: 2–15 points on a 0–100 scale. Apart from the generic TAIQOL subscales, both generic and disease-specific questionnaires used in this study showed good psychometric qualities and responsiveness for use in clinical studies on children with rAOM.
Childhood infection; Acute otitis media; Functional health status; Quality of life; Reliability; Validity; Responsiveness
To test the responsiveness of the Infant/Toddler Quality of Life Questionnaire (ITQOL) to five health conditions. In addition, to evaluate the impact of the child’s age and gender on the ITQOL domain scores.
Observational study of 494 Dutch preschool-aged children with five clinical conditions and 410 healthy preschool children randomly sampled from the general population. The clinical conditions included neurofibromatosis type 1, wheezing illness, bronchiolitis, functional abdominal complaints, and burns. Health-related quality of life (HRQoL) was assessed by a mailed parent-completed ITQOL. Mean ITQOL scale scores for all conditions were compared with scores obtained from the reference sample. The effect of patient’s age and gender on ITQOL scores was assessed using multi-variable regression analysis.
In all health conditions, substantially lower scores were found for several ITQOL scales. The conditions had a variable effect on the type of ITQOL domains and a different magnitude of effect. Scores for ‘physical functioning’, ‘bodily pain’, and ‘general health perceptions’ showed the greatest range. Parental impact scales were equally affected by all conditions. In addition to disease type, the child’s age and gender had an impact on HRQoL.
The five health conditions (each with a distinct clinical profile) affected the ITQOL scales differently. These results indicate that the ITQOL is sensitive to specific characteristics and symptom expression of the childhood health conditions investigated. This insight into the sensitivity of the ITQOL to health conditions with different symptom expression may help in the interpretation of HRQoL results in future applications.
Health-related quality of life; Preschool children; ITQOL; Variety of diseases
Dental disease and treatment experience can negatively affect the oral health related quality of life (OHRQL) of preschool aged children and their caregivers. Currently no valid and reliable instrument is available to measure these negative influences in very young children. The objective of this research was to develop the Early Childhood Oral Health Impact Scale (ECOHIS) to measure the OHRQL of preschool children and their families.
Twenty-two health professionals evaluated a pool of 45 items that assess the impact of oral health problems on 6-14-year-old children and their families. The health professionals identified 36 items as relevant to preschool children. Thirty parents rated the importance of these 36 items to preschool children; 13 (9 child and 4 family) items were considered important. The 13-item ECOHIS was administered to 295 parents of 5-year-old children to assess construct validity and internal consistency reliability (using Cronbach's alpha). Test-retest reliability was evaluated among another sample of parents (N = 46) using the intraclass correlation coefficient (ICC).
ECOHIS scores on the child and parent sections indicating worse quality of life were significantly associated with fair or poor parental ratings of their child's general and oral health, and the presence of dental disease in the child. Cronbach's alphas for the child and family sections were 0.91 and 0.95 respectively, and the ICC for test-retest reliability was 0.84.
The ECOHIS performed well in assessing OHRQL among children and their families. Studies in other populations are needed to further establish the instrument's technical properties.
Few measures of health related quality of life exist for use with preschool aged children. The objective of this study was to assess reliability and validity of a new multidimensional generic measure of health-related quality of life developed for use with preschool children.
Cross-sectional survey sent to parents as their child turned 3 1/2 years of age. The setting was the province of British Columbia, Canada. Patients included all babies admitted to tertiary level neonatal intensive care units (NICU) at birth over a 16-month period, and a consecutive sample of healthy babies. The main outcome measure was a new full-length questionnaire consisting of 3 global items and 10 multi-item scales constructed to measure the physical and emotional well-being of toddlers and their families.
The response rate was 67.9%. 91% (NICU) and 84% (healthy baby) of items correlated with their own domain above the recommended standard (0.40). 97% (NICU) and 87% (healthy baby) of items correlated more highly (≥ 2 S.E.) with their hypothesized scale than with other scales. Cronbach's alpha coefficients varied between .80 and .96. Intra-class correlation coefficients were above .70. Correlations between scales in the new measure and other instruments were moderate to large, and were stronger than between non-related domains. Statistically significant differences in scale scores were observed between the NICU and healthy baby samples, as well as between those diagnosed with a health problem requiring medical attention in the past year versus those with no health problems.
Preliminary results indicate the new measure demonstrates acceptable reliability and construct validity in a sample of children requiring NICU care and a sample of healthy children. However, further development work is warranted.
The quality of life of children with leukemia is reduced by fear and anxiety of parents after diagnosis, lack of information about the disease, treatments, and care of the child. This study aims to evaluate the effect of educating parents of leukemic children on the patients’ quality of life.
In this interventional study, sixty parents of ALL children who met inclusion criteria were selected using simple random sampling method, and assigned to the experimental and control groups. The study tool included a valid and reliable questionnaire (TNO-AZL), that was filled in through interview by parents before and two months after the intervention for both groups. The first part of the questionnaire included demographic items and the second part (7 dimensions, each with 8 sections) contained questions related to the quality of life. The scores could range between 56 and 280 and a higher score represented a better quality of life. The intervention included three one-hour classes composed of lecture and question-answer sessions which were held for groups of 4-6 participants, accompanied by a booklet.
Before the intervention, the quality of life score in the experimental and control groups was 180.83±14.43 and 174.28±20.72, respectively; after the intervention, these figures changed to 226.9±11.76 and 174.41±20.42 respectively. Paired samples T-test proved a significant increase in the quality of life in the experimental group.
Parent education successfully increased the quality of life of leukemic children; therefore, parental consultation sessions and educational programs are recommended.
Leukemia; Children; Education; Parent; Iran
The aim of this study is to validate the questionnaire ECOS-16 (Assessment of health related quality of life in osteoporosis) for the evaluation of health related quality of life (HRQoL) in post-menopausal women with osteoporosis.
An observational, prospective and multi-centre study was carried out among post-menopausal women with osteoporosis in primary care centres and hospital outpatient clinics. All patients attended 2 visits: at baseline and at 6 months. In addition, the subgroup of outpatients attended another visit a month after the baseline to assess the test-retest reliability. The psychometric properties of the questionnaire were evaluated in terms of feasibility, validity (content validity and construct validity) and internal consistency in baseline, and in terms of test-retest reliability and responsiveness to change in visit at month and visit at 6 months, respectively. In all visits, ECOS-16, EUROQoL-5D (EQ-5D) and four 7-point items about health status (general health status, back pain, limitation in daily activities and emotional status) were administered, whereas only outpatients were given MINI-OQLQ (Mini Osteoporosis Quality of Life Questionnaire), besides all clinical variables; and sociodemographic variables at baseline.
316 women were consecutively included, 212 from primary care centres and 104 from hospital outpatient clinics. Feasibility: 94.3% of patients answered all items of the questionnaire. The mean administration time was 12.3 minutes. Validity: factor analysis suggested that the questionnaire was unidimensional. In the multivariate analysis, patients with vertebral fractures, co-morbidity and a lower education level showed to have worse HRQoL. Moderate to high correlations were found between the ECOS-16 score and the other health status questionnaires (0.47–0.82). Reliability: internal consistency (Cronbach's α) was 0.92 and test-retest reliability (ICC) was 0.80. Responsiveness to change: ECOS-16 scores increased according to change perceived by the patient, as well as the effect size (ranges between 1.35 to 0.43), the greater the perception of change in patients' general health status, the greater the changes in patients' scores. The Minimal Clinically Important Difference (MCID) suggested a change of 0.5 points in the ECOS-16 score, representing the least improvement in general health status due to their osteoporosis: "slightly better".
ECOS-16 has been proven preliminarily to have good psychometric properties, so that it can be potentially a useful tool to evaluate HRQoL of post-menopausal women with osteoporosis in research and routine clinical practice.
Objectives: To test the validity and feasibility of the generic 15D health related quality of life (HRQoL) instrument in Parkinson's disease (PD) and compare parkinsonian patients with the general population. Much effort has gone into developing disease specific HRQoL measures for PD, but only generic measures allow comparisons with the general population. New HRQoL tools are needed for PD because earlier ones have low feasibility in elderly patients.
Methods: The study comprised 260 patients with idiopathic PD and age and sex matched controls. HRQoL was evaluated using the disease specific questionnaire PDQ-39 and the 15D generic instrument. PD severity was assessed by Hoehn and Yahr staging, and the activities of daily living (ADL) and motor section of the Unified Parkinson's Disease Rating Scale (UPDRS).
Results: The mean 15D score (scale 0–1; overall HRQoL) was lower in PD (0.77) than in controls (0.86). Patients with PD had significantly lower scores than controls in 13 of the 15 dimensions of 15D. Scores of the corresponding dimensions of PDQ-39 and 15D correlated significantly, confirming the convergent validity of 15D. In multiple stepwise regression analysis, the UPDRS ADL score explained 55% of the variation in the 15D score.
Conclusions: 15D is a valid, feasible, and sensitive tool to assess quality of life in PD. PD has a major impact on HRQoL, which is related to disease progression. Mobility, eating, speech, and sexual functions are most affected. The ADL measure of the UPDRS and the 15D provide an easily assessable view of HRQoL in PD.
To evaluate the feasibility, reliability, validity, and responsiveness of the Pediatric Quality of Life Inventory 4.0 Generic Core Scales (PedsQL) in the first 2 weeks after pediatric emergency department care of minor injury.
Prospective cohort study.
Pediatric hospital emergency department.
Children and adolescents with minor injury (n = 334).
Main Outcome Measures
Child- and parent-reported clinical outcomes and PedsQL scale scores.
The PedsQL had good to excellent internal consistency reliability (α range, 0.73–0.93). For each day that the clinical symptoms persisted, there were consistent decreases in mean health-related quality of life (HRQOL) scores (validity testing). There were significantly greater negative changes in mean HRQOL scores for fractures vs soft-tissue injuries and for lower vs upper extremity injuries. Clinical outcomes categorized as poor had large negative changes in HRQOL not seen in good outcome groups. Distribution-based indicators of change supported good responsiveness (effect sizes for the physical summary score, 0.01–2.44; group differences at follow-up exceeded estimates of the minimal importance difference).
The PedsQL is feasible, reliable, and demonstrates good construct and discriminant validity and responsiveness in measuring short-term outcome after minor injury care in the pediatric emergency department. Assessing short-term outcome from the patient perspective with HRQOL measures may greatly enhance our ability to evaluate the effectiveness of emergency department care.
The PedsQL 3.0 Cancer Module is a widely used instrument to measure pediatric cancer specific health-related quality of life (HRQOL) for children aged 2 to 18 years. We developed the Japanese version of the PedsQL Cancer Module and investigated its reliability and validity among Japanese children and their parents.
Participants were 212 children with cancer and 253 of their parents. Reliability was determined by internal consistency using Cronbach's coefficient alpha and test-retest reliability using intra-class correlation coefficient (ICC). Validity was assessed through factor validity, convergent and discriminant validity, concurrent validity, and clinical validity. Factor validity was examined by exploratory factor analysis. Convergent and discriminant validity were examined by multitrait scaling analysis. Concurrent validity was assessed using Spearman's correlation coefficients between the Cancer Module and Generic Core Scales, and the comparison of the scores of child self-reports with those of other self-rating depression scales for children. Clinical validity was assessed by comparing the on- and off- treatment scores using Kruskal-Wallis and Mann-Whitney U tests.
Cronbach's coefficient alpha was over 0.70 for the total scale and over 0.60 for each subscale by age except for the 'pain and hurt' subscale for children aged 5 to 7 years. For test-retest reliability, the ICC exceeded 0.70 for the total scale for each age. Exploratory factor analysis demonstrated sufficient factorial validity. Multitrait scaling analysis showed high success rates. Strong correlations were found between the reports by children and their parents, and the scores of the Cancer Module and the Generic Core Scales except for 'treatment anxiety' subscales for child reports. The Depression Self-Rating Scale for Children (DSRS-C) scores were significantly correlated with emotional domains and the total score of the cancer module. Children who had been off treatment over 12 months demonstrated significantly higher scores than those on treatment.
The results demonstrate the reliability and validity of the Japanese version of the PedsQL Cancer Module among Japanese children.
The AMS is an internationally used health-related quality of life (HRQoL) scale. The aim of this paper is to provide evidence that the French AMS scale measures HRQoL are as valid as other language versions. We also intend to show whether the application of AMS is really limited to aging males only or not. More generally, we like to demonstrate that the AMS scale is a relevant, validated, sensitive instrument to measure HRQoL and change of symptoms in France.
We performed a representative survey in France to get data AMS scale data. The French data were compared with existing data from other European countries. Only community-based data were used for this comparison.
Results and Discussion
Reliability (here consistency, Cronbach' s alpha) was found to be good and almost identical with other countries. Validity: the internal structure of the AMS (factorial analysis) was sufficiently comparable with the comparison group of other countries in Europe to conclude that the scale really measures the same phenomenon. The sub-scores and total score correlations (Pearson) were high (r = 0.8–0.9) but only somewhat lower among the sub-scales (r = 0.5–0.7). This suggests that the domains are correlated.
The comparison of the French AMS with the generic quality-of-life scale SF-12 showed a good correlation (Pearson r = 0.48 – 0.51) as reported from other countries. We observed also a good correlation between the AMS scale and the depression scale HAD (Pearson r = 0.62).
The analysis of the AMS structure across age groups showed sufficient similarity to suggest that the AMS is also useful for younger age groups.
The French AMS scale is a standardized HRQoL scale with good psychometric characteristics (reliability, validity) as shown for other international versions. We suggest that the AMS scale could be also used in age groups under 40 years to measure and compare HRQoL in males. Since the application of the AMS in younger age was not investigated before, confirmation in future studies is needed.
AMS; Aging Males Symptoms; Quality of Life; Questionnaires; Reliability; Validity
Most studies on health-related quality of life (HRQOL) in children with cancer focussed on survivors. Only few studies have evaluated patients during ongoing oncological treatment. The aim of this study was a prospective assessment of HRQOL in children during the first year after diagnosis of cancer and an examination of demographic, medical, and parental predictors of HRQOL.
Fifty-two patients (mean age: 10.9 years) were assessed 6 weeks and 1 year after diagnosis with the TNO-AZL Questionnaire for Children's Health-Related Quality of Life. Parents completed the Brief Symptom Inventory.
Compared to a community sample, patients reported more physical complaints, reduced motor functioning and autonomy, and impaired positive emotional functioning 6 weeks after diagnosis. HRQOL significantly improved over the year. However, at 1 year, patients still showed reduced motor and emotional functioning. At 6 weeks, children with leukemia were most affected. At 1 year, patients with brain tumors complained about more physical symptoms than the other groups. Intensity of treatment and presence of medical complications mainly influenced HRQOL at 6 weeks but less at 1 year. Parental psychopathology was associated with better cognitive functioning in the child.
This prospective study found several domains of HRQOL to be compromised 6 weeks and 1 year after the diagnosis of cancer. Although HRQOL significantly increased over the year, there were important differences between diagnostic groups. The findings highlight the importance of repeated evaluation of HRQOL in children undergoing cancer treatment and consideration of specific differences between diagnostic groups.
Relatively few attempts to measure the effects on the health-related quality of life (HRQoL) of informal caregivers within the context of economic evaluations have been reported. This paper is an exploratory attempt to find suitable methods to assess caregivers’ HRQoL, using a population of parents of children with major congenital anomalies.
A total of 306 parents of children born with either congenital anorectal malformations (ARM) or congenital diaphragmatic hernia were surveyed. They rated their current HRQoL on the EQ-VAS. After that, they rated their HRQoL again on the assumption that someone would take over their caregiving activities completely and free of charge. Finally, the parents classified their HRQoL on the EQ-5D. The caregivers’ scores on the EQ-VAS and the EQ-5D were compared with scores elicited in the general population.
Most parents indicated that their HRQoL would not change if someone else took on their caregiving activities. Some methodological issues may have influenced this outcome, such as difficulties in self-assessing HRQoL changes due to caregiving, process utility, protest answers, and difficulties in understanding the hypothetical question. The HRQoL of the parents was relatively low compared with population statistics, especially in the parents of children with ARM and in mothers. This can be illustrated by the difference between the mean EQ-5D score of the mothers aged 25–34 years of the children with ARM and that of the general population (0.83 vs. 0.93; P = 0.002).
Significant HRQoL differences exist between parents caring for children with congenital anomalies and the general population. It would be useful to further improve our understanding of the HRQoL impact of informal caregiving, separating ‘caregiving effects’ from ‘family effects’, and distinguishing parent–child relationships from other caregiving situations. This study underlines the importance of considering caregivers, also in the context of economic evaluations. It indicates that general HRQoL measures, as used in patients, may be able to detect HRQoL effects in caregivers, which facilitates the incorporation in common economic evaluations of HRQoL effects in carers. Analysts and policy makers should be aware that if HRQoL improvement is an important aim, they should register HRQoL changes not only in patients but also in their caregivers.
Economic evaluation; Valuation of informal care; Methodology; Quality of life; Neonatal surgery
Several instruments are available to assess children's health-related quality of life (HRQoL) based on self reports as well as proxy reports from parents. Previous studies have found only low-to-moderate agreement between self and proxy reports, but few studies have explicitly compared the psychometric qualities of both. This study compares the reliability, factorial validity and convergent and known group validity of the self-report and parent-report versions of the HRQoL KINDL-R questionnaire for children and adolescents.
Within the nationally representative cross-sectional German Health Interview and Examination Survey for Children and Adolescents (KiGGS), 6,813 children and adolescents aged 11 to 17 years completed the KINDL-R generic HRQoL instrument while their parents answered the KINDL proxy version (both in paper-and-pencil versions). Cronbach's alpha and confirmatory factor-analysis models (linear structural equation model) were obtained. Convergent and discriminant validity were assessed by calculating the Pearson's correlation coefficient for the Strengths and Difficulties Questionnaire. Known-groups differences were examined (ANOVA) for obese children and children with a lower familial socio-economic status.
The parent reports achieved slightly higher Cronbach's alpha values for the total score (0.86 vs. 0.83) and most sub-scores. Confirmatory factor analysis revealed an acceptable fit of the six-dimensional measurement model of the KINDL for the parent (RMSEA = 0.07) and child reports (RMSEA = 0.06). Factorial invariance across the two versions did not hold with regards to the pattern of loadings, the item errors and the covariation between latent concepts. However the magnitude of the differences was rather small. The parent report version achieved slightly higher convergent validity (r = 0.44 – 0.63 vs. r = 0.33 – 0.59) in the Strengths and Difficulties Questionnaire. No clear differences were observed for known-groups validity.
Our study showed that parent proxy reports and child self reports on the child's HRQoL slightly differ with regards to how the perceptions, evaluations and possibly the affective resonance of each group are structured and internally consistent. Overall, the parent reports achieved slightly higher reliability and thus are favoured for the examination of small samples. No version was universally superior with regards to the validity of the measurements. Whenever possible, children's HRQoL should be measured via both sources of information.
Efforts to determine the prevalence of serious emotional disturbance in preschool-aged children have been hampered by the lack of a validated measure. The Preschool and Early Childhood Functional Assessment Scale (PECFAS) is a multi-dimensional measure that assesses the psychosocial functioning of children aged 3–7 years. The concurrent validity and reliability of the PECFAS were assessed in a sample of 30 preschool-aged children in a large Head Start program in Ventura, California. PECFAS ratings based on in-depth interviews were significantly related to parental ratings that the children had mental health problems, psychiatric diagnoses, teacher ratings of the child’s need for mental health evaluations, teacher ratings of behavior problems on a standardized screening inventory (DIAL-R), and actual referrals for mental health evaluations. Interrater reliability for the total PECFAS score was high (r = .90) as was internal consistency of the five subscales (alpha = .86). Using the PECFAS scores as a standard, the weighted prevalence of serious emotional disturbance in this West Coast Head Start program was 17%, at the lower end of the current estimated rate of SED for older children in low income samples (18–26%).
psychosocial functioning; impairment; preschool-age children; multidimensional measures; Head Start
The principals of therapeutic recreation underpin a camping program for children and adolescents living with chronic disease. This study aimed to evaluate the campers' health-related quality of life (HRQoL) before and after the program.
We used the Hungarian version of Kidscreen-52 questionnaire to assess HRQoL. The study sample (n = 115) consisted of children and adolescents aged 10-18 (Mean Age: 13,34; SD: 2,20) collected two months before and two months after camp with the following illnesses: oncology patients (n = 32), diabetes (n = 55) and juvenile immune arthritis (JIA) (n = 28). Repeated measures of multivariate analysis of variance (MANOVA) evaluated pre and post camp changes. We used the Reliable Change Index (RCI) to calculate all the 10 subscales of clinically significant changes.
The Self-perception subscale showed significant positive change from pre camp to post camp with small effect size. Autonomy scores showed time related decline as well as significant time and age group interaction: children under 14 years of age showed a significant moderate effect size decrease on the Autonomy subscale. 32 children (27.8%) showed clinically significant improvement (RCI > 1.96) at least on one subscale. All positive changes were independent of the type of disease, age, gender, and previous camp experience.
The therapeutic recreation camping program had a positive impact on HRQoL of children and adolescents living with cancer, diabetes mellitus and JIA. The experience enhanced their self-perception in all age groups and reduced the autonomy of children under 14 years of age. This study is an innovative use of the KIDSCREEN-52 questionnaire to measure the outcome effectiveness of a psychosocial rehabilitation program and to assess and compare HRQoL of children living with different chronic diseases.
Unintentional injury is a leading threat to children's health. Some human factors have been determined as predictor of unintentional injury. Association between Health-Related Quality of Life (HRQOL) as a human factor and unintentional injuries is unclear. The objective of study is to examine the association between HRQOL and unintentional injuries among primary school children.
This study was a cross-sectional conducted in Ahwaz, a city in Iran. Overall, 3375 children aged 6-10 years were randomly selected from primary school. HRQOL was measured by 56 items taken from seven domains of Netherlands Organization for Applied Scientific Research Academic Medical Center (TNO AZL) child quality of life (TACQOL) parent form. Parents were interviewed to collect information about incidence, cause and a brief description of injury within the past 12 months prior to the study.
The response rate was 3375 of 3792 (89%). There was a significant trend for increasing occurrence of injury with decreasing of HRQOL score (p was less than 0.001). Adjusted OR for injury was significantly higher in very low (2.38, 95% CI: 1.45-3.86), low (2.18, 95% CI: 1.34-3.56), and medium (1.73, 95%CI: 1.06-2.83) HRQOL groups compared to reference group (very high HRQOL). The median of total HRQOL (P less than 0.001) and all its domains (P=0.017) (except autonomous functioning) was lower in injured group compared to uninjured one.
This study found an association between HRQOL and unintentional injury among primary school children. This is a preliminary finding and further investigations with a well-defined analytical design are needed.
The Visual Simplified Respiratory Questionnaire (VSRQ) was designed to assess health-related quality of life (HRQoL) in patients with chronic obstructive pulmonary disease (COPD). It contains eight items: dyspnea, anxiety, depressed mood, sleep, energy, daily activities, social activities and sexual life. Psychometric properties were assessed during a clinical trial that evaluated the impact of tiotropium on HRQoL of COPD patients. These included the determination of structure, internal consistency reliability, concurrent validity with the St George’s Respiratory Questionnaire (SGRQ), test – retest reliability, clinical validity and responsiveness to change over two weeks. Minimal important difference (MID) was calculated; cumulative response curves (CRC) were based on the dyspnea item. Psychometric analyses showed that VSRQ structure was unidimensional. The questionnaire demonstrated good internal consistency reliability (Cronbach’s alpha = 0.84), good concurrent validity with SGRQ (Spearman = −0.70) and clinical validity, good test-retest reproducibility (ICC = 0.77), and satisfactory responsiveness (standardized response mean = 0.57; Guyatt’s statistic = 0.63). MID was 3.4; CRC median value of the ‘minimally improved’ patients was 3.5. In conclusion, VSRQ brevity and satisfactory psychometric properties make it a good candidate for large studies to assess HRQoL in COPD patients. Further validation is needed to extend its use in clinical practice.
chronic obstructive pulmonary disease; VSRQ; SGRQ; health-related quality of life; minimal important difference
Despite the availability of standard instruments for evaluating health-related quality life (HRQoL), the feasibility, reliability, and validity of such instruments among tuberculosis (TB) patients in different populations of sub-Saharan Africa where TB burden is of concern, is still lacking.
We established the feasibility, reliability, and validity of the Medical Outcomes Survey (MOS) in assessing HRQoL among patients with pulmonary tuberculosis in Kampala, Uganda.
In a cross-sectional study, 133 patients with known HIV status and confirmed pulmonary TB disease were recruited from one public and one private hospital. Participants were enrolled based on duration of TB treatment according to the following categories: starting therapy, two months of therapy, and eight completed months of therapy. A translated and culturally adapted standardized 35-item MOS instrument was administered by trained interviewers. The visual analogue scale (VAS) was used to cross-validate the MOS.
The MOS instrument was highly acceptable and easily administered. All subscales of the MOS demonstrated acceptable internal consistency with Cronbach's alpha above 0.70 except for role function that had 0.65. Each dimension of the MOS was highly correlated with the dimension measured concurrently using the VAS providing evidence of validity. Construct validity demonstrated remarkable differences in the functioning status and well-being among TB patients at different stages of treatment, between patients attending public and private hospitals, and between men and women of older age. Patients who were enrolled from public hospital had significantly lower HRQoL scores (0.78 (95% confidence interval (CI); 0.64-0.95)) for perceived health but significantly higher HRQoL scores (1.15 (95% CI; 1.06-1.26)) for health distress relative to patients from private hospital. Patients who completed an 8 months course of TB therapy had significantly higher HRQoL scores for perceived health (1.93 (95% CI; 1.19-3.13)), health distress subscales (1.29 (95% CI; 1.04-1.59)) and mental health summary scores (1.27 (95% CI; 1.09-1.48)) relative to patients that were starting therapy in multivariable analysis. Completion of 8 months TB therapy among patients who were recruited from the public hospital was associated with a significant increase in HRQoL scores for quality of life subscale (1.26 (95% CI; 1.08-1.49)), physical health summary score (1.22 995% CI; 1.04-1.43)), and VAS (1.08 (95% CI; 1.01-1.15)) relative to patients who were recruited from the private hospital. Older men were significantly associated with lower HRQoL scores for physical health summary score (0.68 (95% CI; 0.49-0.95)) and VAS (0.87 (95% CI; 0.75-0.99)) relative to women of the same age group. No differences were seen between HIV positive and HIV negative patients.
The study provides evidence that the MOS instrument is valid, and reliably measures HRQoL among TB patients, and can be used in a wide variety of study populations. The HRQoL differed by hospital settings, by duration of TB therapy, and by gender in older age groups.
Eczema, asthma and hay fever are global health problems and their prevalence has increased considerably over the last decades. All appear to share an underlying atopic diathesis but their aetiology is considered to be multifactorial. They have been linked to decreases in health related quality of life (HRQoL) in adults, children/adolescents and/or parents of children. Research also suggests an association of the three conditions with mental health, which in turn is related to HRQoL decreases. We aimed to assess whether the impact of any of the three conditions on HRQoL is modified by presence of mental health problems.
The impact of occurrence of the three conditions within the past four weeks and 12 months on HRQoL, as measured by the ‘Quality of Life in Children – Revised’ (KINDL-R) questionnaire was analysed by use of the complex sample general linear model in a population-based sample (N = 6518) of children and adolescents aged 11 – 17. Analyses were adjusted for the other atopic conditions, sociodemographic and clinical variables and stratified for mental health as measured by the Strengths and Difficulties Questionnaire (SDQ) (normal n = 5697, borderline n = 609, abnormal n = 193).
Eczema and hay fever within the past four weeks were significantly associated with decreased total or certain subscales of KINDL-R after adjusting for all other variables when no mental health abnormalities were present while asthma was associated with better HRQoL in these individuals. However, when mental health problems were present, eczema was positively associated with several subscales and the positive impact of asthma was stronger. The presence of mental health problems accentuated the negative relationship between hay fever and HRQoL (stronger negative impact). However, due to decreasing numbers in the group with mental health problems only few associations reached statistical significance.
While the results suggest mental health to have a modifying effect on the relationship between some atopic conditions and HRQoL caution needs to be exercised in interpreting the results: First, the groups with borderline or abnormal mental health were comparably smaller than the group with normal mental health. In the group with normal mental health small effects were more likely to become significant than in the other two groups. Secondly some problems regarding the validity of the self-report SDQ still remain.
Introduction: Sleep disturbances are common in adolescents and adversely affect performance, social contact, and susceptibility to stress. We investigated the hypothesis of a relationship between sleep and health-related quality of life (HRQoL), and applied self- and proxy ratings. Materials and Methods: The sample comprised 92 adolescents aged 11–17 years. All participants and their parents completed a HRQoL measure and the Sleep Disturbance Scale for Children (SDSC). Children with SDSC T-scores above the normal range (above 60) were classified as poor sleepers. Results: According to self- and proxy ratings, good sleepers reported significantly higher HRQoL than poor sleepers. Sleep disturbances were significantly higher and HRQoL significantly lower in self- as compared to parental ratings. Parent-child agreement was higher for subscales measuring observable aspects. Girls experienced significantly stronger sleep disturbances and lower self-rated HRQoL than boys. Discussion: Our findings support the positive relationship of sleep and HRQoL. Furthermore, parents significantly underestimate sleep disturbances and overestimate HRQoL in their children.
quality of life; sleep; adolescence; parent-child agreement; sleep disorders