Measuring the health-related quality of life of children with impaired mobility: examining correlation and agreement between children and parent proxies.
Ontology highlight
ABSTRACT:
SUBMITTER: Bray N
PROVIDER: S-EPMC5553751 | biostudies-other | 2017 Aug
REPOSITORIES: biostudies-other
Similar Datasets
Project description:ImportanceParent recall is the primary method for measuring positioning practices such as tummy time in infants. Concerns regarding the accuracy of parent recall have been raised in the literature. To date, no study has examined the agreement of tummy time recall measures with gold-standard methods.ObjectiveTo assess the agreement between parental recall versus direct observation of tummy time in infants, and to explore the impact of prematurity on this relationship.DesignCross-sectional observational study, spanning 1 yr.SettingParticipants' homes Participants: Thirty-two infant-parent dyads (19 full-term, 13 preterm), with infants ages 3 to 6 mo and caregivers ages older than 18 yr.Outcome and measuresHome-recorded videos of infant play across 3 days were used as a proxy for direct observation of tummy time and compared with a 12-item parent recall survey.ResultsParent recall had a significant moderate correlation (ρ = .54, p = .002) with direct observation in full-term infants but was not correlated (p = .23) with direct observation in preterm infants. On average, parents of preterm infants overestimated tummy time by 2.5 times per day compared with direct observation.Conclusions and relevanceFor full-term infants, parent recall measures of tummy time exhibit an acceptable level of agreement with direct observation and can be reliably used over shorter periods. Parents of preterm infants may display a bias in recalling tummy time, leading to overestimations. To accurately assess tummy time in this population, a combination of subjective and objective measures should be explored. Plain-Language Summary: Tummy time is an essential movement experience for infants, especially for preterm infants, who are at a higher risk for motor delays. The most common way to track tummy time is through parent reports, or recall, versus a practitioner directly observing tummy time in the home. Despite the widespread use of parent recall to track tummy time, no study has examined the accuracy of parent recall versus direct observation in the home. Accurately assessing tummy time is crucial for improving and supporting health outcomes for infants. This study found that prematurity may affect the accuracy of parent recall for assessing tummy time in young infants. The authors discuss the implications of this finding and provide suggestions to guide the selection of appropriate methods to measure tummy time in clinical practice and research studies.
| S-EPMC11312063 | biostudies-literature
Project description:PurposeExamine the health-related quality of life of 5-6-year-old underweight, overweight and obese children.MethodsOur cross-sectional study included 3,227 parent-child dyads from the "Be active, eat right" study. Parents completed questionnaires regarding child and parental characteristics. Health-related quality of life of the child was measured using the Child Health Questionnaire Parent Form 28. Children were classified normal weight, overweight, obese, severely obese, and underweight according to the international age and gender BMI cutoff points. Bootstrap analyses were performed for general linear models corrected for potential confounding variables.ResultsSeverely obese children (β, -2.60; 95% CI, -4.80 to -0.57, p < 0.01) and underweight children (β, -1.11; 95% CI, -1.85 to -0.39, p < 0.01) had lower parent-reported scores on the physical summary scale. On the physical functioning profile scale parents of overweight and severely obese children also reported statistically significant lower scores (p < 0.05 and p < 0.01, respectively).There were no significant differences regarding the psychosocial summary scale scores between the different weight categories.ConclusionUnderweight and overweight children experience impaired health-related quality of life on the physical functioning domain. Physicians, teachers and parents should be aware of the possible negative impact on health-related quality of life in underweight and overweight 5-6-year-old children.
| S-EPMC3636439 | biostudies-literature
Project description:PURPOSE:To report piloting and initial validation of the VQoL_CYP, a novel age-appropriate vision-related quality of life (VQoL) instrument for self-reporting by children with visual impairment (VI). METHODS:Participants were a random patient sample of children with VI aged 10-15 years. 69 patients, drawn from patient databases at Great Ormond Street Hospital and Moorfields Eye Hospital, United Kingdom, participated in piloting of the draft 47-item VQoL instrument, which enabled preliminary item reduction. Subsequent administration of the instrument, alongside functional vision (FV) and generic health-related quality of life (HRQoL) self-report measures, to 101 children with VI comprising a nationally representative sample enabled further item reduction and evaluation of psychometric properties using Rasch analysis. Construct validity was assessed through Pearson correlation coefficients. RESULTS:Item reduction through piloting (8 items removed for skewness and individual item response pattern) and validation (1 item removed for skewness and 3 for misfit in Rasch) produced a 35-item scale, with fit values within acceptable limits, no notable differential item functioning, good measurement precision, ordered response categories and acceptable targeting in Rasch. The VQoL_CYP showed good construct validity, correlating strongly with HRQoL scores, moderately with FV scores but not with acuity. CONCLUSIONS:Robust child-appropriate self-report VQoL measures for children with VI are necessary for understanding the broader impacts of living with a visual disability, distinguishing these from limited functioning per se. Future planned use in larger patient samples will allow further psychometric development of the VQoL_CYP as an adjunct to objective outcomes assessment.
| S-EPMC4768881 | biostudies-literature
Project description:BACKGROUND: The presence of clinical signs have implications for diagnosis, prognosis and treatment. Therefore, the aim of this study was to examine the inter-observer agreement of clinical signs in pre-school children presenting to primary care. METHODS: A nested study comparing two clinical assessments within a prospective cohort of 256 pre-school children with acute cough recruited from eight general practices in Leicestershire, UK. We examined agreement (using kappa statistics) between unstandardised and standardised clinical assessments of tachypnoea, chest signs and fever. RESULTS: Kappa values were poor or fair for all clinical signs (range 0.12 to 0.39) with chest signs the most reliable. CONCLUSIONS: Primary care clinicians should be aware that clinical signs may be unreliable when making diagnosis, prognosis and treatment decisions in pre-school children with cough. Future research should aim to further our understanding of how best to identify abnormal clinical signs.
| S-EPMC387826 | biostudies-other
Project description:Human mobility is a key component of large-scale spatial-transmission models of infectious diseases. Correctly modeling and quantifying human mobility is critical for improving epidemic control, but may be hindered by data incompleteness or unavailability. Here we explore the opportunity of using proxies for individual mobility to describe commuting flows and predict the diffusion of an influenza-like-illness epidemic. We consider three European countries and the corresponding commuting networks at different resolution scales, obtained from (i) official census surveys, (ii) proxy mobility data extracted from mobile phone call records, and (iii) the radiation model calibrated with census data. Metapopulation models defined on these countries and integrating the different mobility layers are compared in terms of epidemic observables. We show that commuting networks from mobile phone data capture the empirical commuting patterns well, accounting for more than 87% of the total fluxes. The distributions of commuting fluxes per link from mobile phones and census sources are similar and highly correlated, however a systematic overestimation of commuting traffic in the mobile phone data is observed. This leads to epidemics that spread faster than on census commuting networks, once the mobile phone commuting network is considered in the epidemic model, however preserving to a high degree the order of infection of newly affected locations. Proxies' calibration affects the arrival times' agreement across different models, and the observed topological and traffic discrepancies among mobility sources alter the resulting epidemic invasion patterns. Results also suggest that proxies perform differently in approximating commuting patterns for disease spread at different resolution scales, with the radiation model showing higher accuracy than mobile phone data when the seed is central in the network, the opposite being observed for peripheral locations. Proxies should therefore be chosen in light of the desired accuracy for the epidemic situation under study.
| S-EPMC4091706 | biostudies-literature
Project description:BackgroundThe KIDSCREEN-27 is a measure of child and adolescent quality of life (QoL), with excellent psychometric properties, available in child-report and parent-rating versions in 38 languages. This study provides child-reported and parent-rated norms for the KIDSCREEN-27 among Swedish 11-16 year-olds, as well as child-parent agreement. Sociodemographic correlates of self-reported wellbeing and parent-rated wellbeing were also measured.MethodsA random population sample consisting of 600 children aged 11-16, 100 per age group and one of their parents (N = 1200), were approached for response to self-reported and parent-rated versions of the KIDSCREEN-27. Parents were also asked about their education, employment status and their own QoL based on the 26-item WHOQOL-Bref. Based on the final sampling pool of 1158 persons, a 34.8% response rate of 403 individuals was obtained, including 175 child-parent pairs, 27 child singleton responders and 26 parent singletons. Gender and age differences for parent ratings and child-reported data were analyzed using t-tests and the Mann-Whitney U-test. Post-hoc Dunn tests were conducted for pairwise comparisons when the p-value for specific subscales was 0.05 or lower. Child-parent agreement was tested item-by-item, using the Prevalence- and Bias-Adjusted Kappa (PABAK) coefficient for ordinal data (PABAK-OS); dimensional and total score agreement was evaluated based on dichotomous cut-offs for lower well-being, using the PABAK and total, continuous scores were evaluated using Bland-Altman plots.ResultsCompared to European norms, Swedish children in this sample scored lower on Physical wellbeing (48.8 SE/49.94 EU) but higher on the other KIDSCREEN-27 dimensions: Psychological wellbeing (53.4/49.77), Parent relations and autonomy (55.1/49.99), Social Support and peers (54.1/49.94) and School (55.8/50.01). Older children self-reported lower wellbeing than younger children. No significant self-reported gender differences occurred and parent ratings showed no gender or age differences. Item-by-item child-parent agreement was slight for 14 items (51.9%), fair for 12 items (44.4%), and less than chance for one item (3.7%), but agreement on all dimensions as well as the total score was substantial according to the PABAK-OS. Visual interpretation of the Bland-Altman plot suggested that when children's average wellbeing score was lower parents seemed to rate their children as having relatively higher total wellbeing, but as children's average wellbeing score increased, parents tended to rate their children as having relatively lower total wellbeing. Children living with both parents had higher wellbeing than those who lived with only one parent.ConclusionsResults agreed with European findings that adolescent wellbeing decreases with age but contrasted with some prior Swedish research identifying better wellbeing for boys on all dimensions but Social support and peers. The study suggests the importance of considering children's own reports and not only parental or other informant ratings. Future research should be conducted at regular intervals and encompass larger samples.
| S-EPMC4784934 | biostudies-literature
Project description:ObjectiveTo examine agreement between patient and proxy responses on the Quality of Life in Neurological Disorders (Neuro-QoL) instruments after stroke.DesignCross-sectional observational substudy of the longitudinal, multisite, multicondition Neuro-QoL validation study.SettingIn-person, interview-guided, patient-reported outcomes.ParticipantsConvenience sample of dyads (N=86) of community-dwelling persons with stroke and their proxy respondents.InterventionsNot applicable.Main outcome measuresDyads concurrently completed short forms of 8 or 9 items for the 13 Neuro-QoL adult domains using the patient-proxy perspective. Agreement was examined at the scale-level with difference scores, intraclass correlation coefficients (ICCs), effect size statistics, and Bland-Altman plots, and at the item-level with kappa coefficients.ResultsWe found no mean differences between patients and proxies on the Applied Cognition-General Concerns, Depression, Satisfaction With Social Roles and Activities, Stigma, and Upper Extremity Function (Fine Motor, activities of daily living) short forms. Patients rated themselves more favorably on the Applied Cognition-Executive Function, Ability to Participate in Social Roles and Activities, Lower Extremity Function (Mobility), Positive Affect and Well-Being, Anxiety, Emotional and Behavioral Dyscontrol, and Fatigue short forms. The largest mean patient-proxy difference observed was 3 T-score points on the Lower Extremity Function (Mobility). ICCs ranged from .34 to .59. However, limits of agreement showed dyad differences exceeding ±20 T-score points, and item-level agreement ranged from not significant to weighted kappa=.34.ConclusionsProxy responses on Neuro-QoL short forms can complement responses of moderate- to high-functioning community-dwelling persons with stroke and augment group-level analyses, but do not substitute for individual patient ratings. Validation is needed for other stroke populations.
| S-EPMC4628567 | biostudies-literature
Project description:BackgroundParental reflective functioning (PRF) is the capacity parents have to understand their own mental states and those of their children, as well as the influence of those mental states on behavior. Parents with greater capacity for PRF are more likely to foster secure attachment with their children. The Parental Development Interview is a gold standard measure of PRF but is hampered by cost, training, and length of administration. The 18-item Parent Reflective Functioning Questionnaire (PRFQ-18) is a simpler option developed to capture 3 types of PRF: (1) prementalizing, (2) parent's certainty, and (3) interest and curiosity surrounding a child's mental state.ObjectiveThe aim of this study was to examine the factor structure and select psychometric properties of the PRFQ in a sample of Canadian parents.MethodsWe examined the factor structure and discriminant and construct validity of the PRFQ-18 among 306 parents (males=120 and females=186) across Canada; the age range of children was 0 to 12 years. Parents also completed Web-based measures of perceived stress, parental coping, parenting competence, and social support.ResultsA confirmatory factor analysis confirmed the hypothesized 3-factor structure of the PRFQ-18 providing evidence that the PRFQ-18 may be a useful and practical measure of PRF in Canadian adults and showed minor revisions may improve the suitability of the PRFQ-18 for assessing PRF.ConclusionsThese results add support for the construct validity of the PRFQ-18.
| S-EPMC6716429 | biostudies-literature
Project description:Objective: In clinical structured diagnostic interviews, diagnoses based on parent and child reports have low to moderate agreement. The aims of the present study are (1) to examine diagnostic agreement on anxiety disorders between parents and children on the levels of current and lifetime diagnostic category and diagnoses focusing in particular on diagnostic criteria and (2) to identify parent- and child-related predictors for diagnostic agreement. Method: The sample consisted of 166 parent-child dyads interviewed with the Structured Diagnostic Interview for Mental Disorders in Children (Kinder-DIPS, Schneider et al., 2009). The children (51.8% girls) were between the ages of 7 and 18 years (M = 10.94; SD = 2.22). Results: Overall, parent-child agreement on the diagnostic category of anxiety disorder (k = 0.21; k = 0.22) and the specific anxiety diagnoses (base rate > 10%) of social phobia, specific phobia and separation anxiety disorder (k = 0.24-0.52; k = 0.19-0.43) and corresponding diagnostic criteria (k = 0.22-0.67; k = 0.24-0.41) were low to moderate with the highest agreement on separation anxiety disorder (k > 0.43). Lower maternal depression, and higher social support reported by mother and father were associated with higher parent-child agreement. Maternal depression was indicated as the strongest predictor. Parental sense of competence, parental anxiety, the amount of parent-child interaction and the child's age and gender had no predictive value. Conclusions: Parent-child agreement can be expected to be higher on the level of anxiety criteria compared to specific anxiety diagnoses and diagnostic anxiety category. Psychological strains in the family-especially maternal depression and low social support-lower the parent-child agreement on anxiety symptoms. Child- and relation-related variables (age, gender, amount of time parent(s) and children interact) play no role in the prediction of low parent-child agreement.
| S-EPMC5366335 | biostudies-literature
Project description:Pediatric Health Related Quality of Life (HRQoL) among childhood cancer survivors (CCS) measures the impact of illness and treatment from the patient's perspective. However, parents often serve as proxies when the child cannot provide information directly. Studies of agreement between parents' proxy assessment and child's self-report have shown discrepancies. Understanding the reasons for discrepancies is under studied. Thus, this study examined the agreement of 160 parent-CCS dyads on the child's domains of HRQoL by mean difference, intra-class correlation coefficients, and Bland-Altman plots. Differences in agreement were assessed by patients' age, ethnicity, and whether or not they lived with their parents. Overall, the Physical Function Score showed good agreement between parents and CCS (ICC = 0.62), while the Social Function Score had fair agreement (ICC = 0.39). CCS were more likely to rate their Social Function Score higher than their parent. The lowest agreement for the Social Function Score was found for 18-20 years old's (ICC = .254) versus younger or older CCS, and among non-Hispanic whites (ICC = 0.301) versus Hispanics. Differences in agreement varied by patient age and ethnicity, suggesting that other factors, including emotional, familial, and cultural factors, may influence parental awareness of CCS HRQoL.
| S-EPMC11351002 | biostudies-literature