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Evidence-based literature recognizes that the different degrees of agreement between a child self-report and a proxy-report depend on the characteristics of the domains, the child's age and illness, the proxy's own perspective on QoL, and family attendance during the child's hospitalization. This study aims to determine the degree of agreement between proxy-reports and child self-reports on quality of life (QoL) for children with hematologic malignancy ranging in age from 5 to 18 years who are undergoing treatment. We retrieved clinical QoL data from a study titled "Dynamic change in QoL for Vietnamese children with hematologic malignancy" from April 2021 to December 2022. To evaluate the magnitude of agreement between self-reports and proxy-reports, intraclass correlation coefficients (ICCs) for 259 pairs of measurements were quantified. Using independent t tests, the mean differences between self-reports and proxy-reports were tested. Moderate agreement was consistent through all age groups for five subscales, including physical, psychosocial, pain, nausea, and procedural anxiety (ICCs ranged from 0.53 to 0.74). The weakest agreement appeared in two groups, subjects aged 5-7 years and 13-18 years on six domains (school, treatment anxiety, worry, cognitive problems, perceived physical appearance, and communication) (-0.01 to 0.49). Child self-rating was consistently higher than that of proxies for the physical, emotional, and nausea domains among children aged 5-7 years and for procedural anxiety, treatment anxiety, and cognitive problems among children aged 8-12 years.    Conclusion: The agreement level of self-reports and proxy-reports was differently distributed by child age and the PedsQL domains. The proxy children agreement on QoL among children with hematologic malignancy was divergent according to the different age groups, which could potentially be explained by proxy-child bonding at different stages of childhood development. Our recommendation for future studies is to explore children's age as a potential factor influencing proxy agreement on QoL among children with cancer. What is Known: • Children and their proxies may think differently about quality of life (QoL). • Comparing two sources of data (i.e., child and proxy) on aspects of QoL can help identify the discrepancies between children's perceptions of their QoL and their parents' perceptions. This can be useful in terms of identifying potential areas for improvement or concern and may also be helpful in making decisions about treatment and care. What is New: • Our study results demonstrated that proxies who comprised children aged 5-7 years or 13-18 years reported differently among domains that cannot be expressed verbally or with body language, including cognitive problems, perceived physical appearance, and communication. • Children generally perceived their QoL to be better than their proxies. Therefore, a more comprehensive understanding of children's QoL may require the consideration of multiple sources of data from various perspectives.

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BACKGROUND: Cerebral palsy (CP) is one of the most common childhood disabilities, impacting many areas of a child's life. Increasingly, quality of life (QOL) measures are used to capture holistic wellbeing of children with CP. However most validated QOL measures for children are based on adult perspective only, with limited focus on child perspective. Conceptual differences between children's and adults' definitions of QOL may reflect different underlying QOL models which contribute to measurement score divergence. This qualitative study investigated the conceptual meaning of QOL for children with CP, comparing child and parent perspectives. Eighteen families completed 8 child interviews and 18 parent interviews. Children (11 boys, 7 girls) represented the spectrum of motor functioning, with comorbidities including epilepsy, intellectual disability, and communication impairments. Child and parent interviews were analysed separately using constructivist grounded theory methods and then findings were integrated to examine similarities and differences. RESULTS: All participants sought child inclusion in social activities, education, and recreation, requiring negotiation, adaptations, and advocacy. Five conceptual categories emerged from child interviews: socialising, play, negotiating limitations, self-identity, and developing agency. This reflected an individual model of QOL supporting child development goals. Parent interview findings revealed concepts related to child-specific QOL (day-to-day functioning and enabling child goals), as well as parent and family functioning concepts aligned to models of "family QOL", embracing impacts of family relationships and the interdependence of QOL among family members. CONCLUSIONS: This study identified similarities and differences in child and parent perceptions of QOL for the child with CP. Children provided insights into the importance of play and peer support, and their developing self-identity and sense of agency. Self-directed free play, especially, was identified by children but not parents as a central everyday activity promoting wellbeing and social inclusion. Parents discussed family functioning and aspects outside of child sight, such as managing time and financial resources. Relying on parents' perspective alone to model child QOL misses valuable information that children contribute. Equally, child report alone misses parent experiences that directly influence child QOL. There is value in incorporating family QOL into parent reports while developing a conceptually separate child self-report QOL instrument.

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OBJECTIVE: Caregivers frequently report poor quality of life (QOL) in children with sleep-disordered breathing (SDB). Our objective is to assess the correlation between caregiver- and child-reported QOL in children with mild SDB and identify factors associated with differences between caregiver and child report. STUDY DESIGN: Analysis of baseline data from a multi-institutional randomized trial SETTING: Pediatric Adenotonsillectomy Trial for Snoring, where children with mild SDB (obstructive apnea-hypopnea index <3) were randomized to observation or adenotonsillectomy. METHODS: The Pediatric Quality of Life Inventory (PedsQL) assessed baseline global QOL in participating children 5 to 12 years old and their caregivers. Caregiver and child scores were compared. Multivariable regression assessed whether clinical factors were associated with differences between caregiver and child report. RESULTS: PedsQL scores were available for 309 families (mean child age, 7.0 years). The mean caregiver-reported PedsQL score was higher at 75.2 (indicating better QOL) than the mean child-reported score of 67.9 (P < .001). The agreement between caregiver and child total PedsQL scores was poor, with intraclass correlation coefficients of 0.03 (95% CI, -0.09 to 0.15) for children 5 to 7 years old and 0.21 (95% CI, 0.03-0.38) for children 8 to 12 years old. Higher child age and health literacy were associated with closer agreement between caregiver and child report. CONCLUSION: Caregiver- and child-reported global QOL in children with SDB was weakly correlated, more so for young children. In pediatric SDB, child-perceived QOL may be poorer than that reported by caregivers. Further research is needed to assess whether similar trends exist for disease-specific QOL metrics.

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Identifying and measuring anxiety in young people on the autism spectrum can be challenging. The present study investigated the use of the Anxiety Scale for Children with Autism Spectrum Disorder (ASC-ASD), a self- and caregiver-rated screening tool in a Singaporean sample of ninety-one verbal autistic youths and their caregivers. Internal consistency ranged from satisfactory to desirable (α = .74-.92). Convergent validity with medium-large effect size was established using a structured diagnostic interview, the Mini-International Neuropsychiatric Interview for Children and Adolescents (MINI-KID). ASC-ASD scores were positively associated with autistic symptoms and response patterns indicated strong endorsement of autism-specific items. The findings are discussed in relation to existing literature on assessment of anxiety in ASD and in light of the study's strengths and limitations.

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Social anxiety typically emerges by adolescence and is one of the most common anxiety disorders. Many clinicians and researchers utilize the Screen for Child Anxiety Related Disorders (SCARED) to quantify anxiety symptoms, including social anxiety, throughout childhood and adolescence. The SCARED can be administered to both children and their parents, though reports from each informant tend to only moderately correlate. Here, we investigated parent-child concordance on the SCARED in a sample of adolescents (N = 360, Mage = 13.2) using a multi-trait multi-method (MTMM) model. Next, in a selected sample of the adolescents, we explored relations among child report, parent report, and latent social anxiety scores with two laboratory tasks known to elicit signs of social anxiety in the presence of unfamiliar peers: a speech task and a "Get to Know You" task. Findings reveal differences in variance of the SCARED accounted for by parent and child report. Parent report of social anxiety is a better predictor of anxiety signs elicited by a structured speech task, whereas child report of social anxiety is a better predictor of anxiety signs during the naturalistic conversation with unfamiliar peers. Moreover, while latent social anxiety scores predict both observed anxiety measures, parent report more closely resembles latent scores in relation to the speech task, whereas child report functions more similarly to latent scores in relation to the peer conversation. Thus, while latent scores relate to either observed anxiety measure, parent and child report on the SCARED each provide valuable information that differentially relate to naturalistic social anxiety-related behaviors.

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Alexithymia is a subclinical trait involving difficulty describing and identifying emotions. It is common in a number of psychiatric conditions. Alexithymia in children is sometimes measured by parent report and sometimes by child self-report, but it is not yet known how closely related the two measures are. This is an important question both theoretically and practically, in terms of research design and clinical practice. We conducted a preliminary study to investigate this question in a sample of 6- to 11-year-old neurotypical children and their parents (N = 29 dyads). Parent and child reports were not correlated, and 93% of parents under-estimated their child's level of alexithymia relative to the child's self-report. Based on these results, we hypothesize that when asked to report on the child's alexithymia, children and parents may not be reporting on the same phenomenon, and thus these two measures may not be interchangeable. These provocative findings, however, must be considered preliminary: our analyses were sufficiently powered to detect a strong relation between the two types of report had one existed, but our analyses were not sufficiently powered to distinguish between a small relation and no relation at all.

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OBJECTIVE: To examine (a) the quality of life (QOL) in children with Tourette's disorder (TD) and ADHD (TD + ADHD) compared with ADHD without tics (ADHD alone) and (b) the effects of the severity of tics, ADHD symptoms, comorbid diagnoses, and family functioning on QOL. METHOD: The assessments included the Kiddie-Schedule for Affective Disorders and Schizophrenia, Yale Global Tic Severity Scale, ADHD Rating Scale, Pediatric Quality of Life Inventory, and Family Assessment Device. RESULTS: The TD + ADHD group had poorer psychosocial QOL. Agreement between child and parent ratings was higher in the TD + ADHD group, and children reported higher scores than their parents in both groups. Severity of tics and ADHD symptoms had stronger negative associations with parent-reported than child-reported QOL. Significant positive correlations were detected between QOL and family functioning in both groups. CONCLUSION: Children with TD + ADHD have lower QOL than their peers with ADHD alone. Family functioning seems to affect QOL in both groups.

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The study compares parent and child reports of child mental health to determine the relationship between parent-child disagreement and parental psychological and attitudinal factors, and to determine how parent-child disagreement is associated with the use of specialized services. A cross-sectional study was conducted with 1268 children aged 6-11 years using the Dominic Interactive and the Strengths and Difficulties Questionnaire. Psychological distress and negative parental attitudes were associated with greater reporting of mental health problems, leading to greater parent-child agreement on symptom presence, and to parental over-reporting of symptoms. Parent/child agreement was associated with 43.83% of contact with a mental health provider for externalizing and 33.73% for internalizing problems. The contribution of key parental psychological and attitudinal factors in parent-child disagreement on child mental health status may prove helpful in improving the identification of children in need of specialized services.

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PURPOSE: To describe the development of pediatric family relationships measures, with versions for child self-report (8-17 years) and parent-report for children 5-17 years old. Measures were created for integration into the Patient Reported Outcomes Measurement Information System (PROMIS®). METHODS: Semi-structured interviews with 10 experts, 24 children, and 8 parents were conducted to elicit and clarify essential elements of family relationships. A systematic literature review was conducted to identify item concepts representative of each element. The concepts were transformed into items that were iteratively revised based on cognitive interviews (n = 43 children) and item translatability review. Psychometric studies involving 2846 children and 2262 parents were conducted to further refine and validate the instruments. RESULTS: Qualitative procedures supported the development of content valid Family Relationships item banks. Final child- and parent-report item banks each contain 47 items. Unidimensional item banks were calibrated using IRT-modeling to estimate item parameters representative of the US population and to enable computerized adaptive test administration. Four- and eight-item short forms were constructed for standard fixed format administration. All instruments have strong internal consistency, retest-reliability, and provide precise estimates of various levels of family relationship quality. Preliminary evidence of the instruments' validity was provided by known-group comparisons and convergence with legacy measures. CONCLUSION: The PROMIS pediatric Family Relationships measures can be applied in research focused on determinants, outcomes, and the protective effects of children's subjective family relationship experiences.

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Patterns of agreement between parent and child ratings of psychosocial functioning and fatigue in children with obesity were examined. Analyses demonstrated moderate agreement for social anxiety in elementary children and small agreement for social anxiety in adolescents. Results of analyses of overall quality of life revealed small agreement in children under the age of 8, large agreement in children ages 8-12, and moderate agreement in adolescents ages 13-18. Overall ratings of fatigue demonstrated moderate agreement both in elementary children and in adolescents. A meaningful relationship was found between each factor measured by a parent and a child. Patterns which were unexpected given the existing literature were found; possible hypotheses explaining these patterns are presented; and the need for further research is highlighted.

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Many children with autism spectrum disorder (ASD) experience high levels of anxiety. A widely used measure for typically developing children is the Revised Child Anxiety and Depression Scale (RCADS). However, such anxiety measures may require adaptation to accommodate characteristics of those with ASD. An adapted version of the RCADS was created based on empirical evidence of anxiety phenomenology in ASD, which included additional items related to sensory anxiety, intolerance of uncertainty, and phobias. Content validity was refined during focus groups with parents. Polychoric factor analysis was undertaken on data from 170 children with ASD, aged 8-16, and their parents. This process resulted in the creation of a new 24 item scale (self and parent report) each with four subscales: Performance Anxiety, Uncertainty, Anxious Arousal, and Separation Anxiety, with evidence of good reliability and validity. The freely available Anxiety Scale for Children - ASD, Parent and Child versions (ASC-ASD) has promising psychometric properties including good internal consistency, validity, and 1 month test-retest reliability. Autism Res 2016, 9: 1205-1215. © 2016 International Society for Autism Research, Wiley Periodicals, Inc.

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OBJECTIVES: To examine the agreement between children's and parents' reporting of illness-related absenteeism from school and to examine predictors for disagreement between children and parents. STUDY DESIGN AND SETTING: A total of 8,438 schoolchildren aged from 5 to 15 years (grade 0-8) and one parent of each child were invited to participate in the Hi Five baseline study. The response rate for children answering a questionnaire was 89% (n = 7,525), and 36% of the parents (n = 3,008) participated in a weekly illness registration study using text messages (short message service) over a period of 22 weeks. Text messages and questionnaire data were linked at the individual level, leaving 2,269 child-parent pairs in the analysis, corresponding to 27% of the eligible sample. RESULTS: The agreement between children's and parents' reports of illness-related absenteeism was good, with high absolute agreement and slight to moderate Ƙ values. Agreement was lowest for 6- to 8-year-olds and highest for 11- to 12-year-olds. Children's reports of illness symptoms and parents' reports of their children's illnesses in the preceding week were strong predictors for children reporting illness-related absenteeism when parents did not. CONCLUSION: Illness-related absenteeism can be reported by children, and children report higher prevalence of illness-related absenteeism than parents.

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In this study, we assessed parent-child agreement in the perception of children's general happiness or well-being in typically developing children (10- and 11-year-olds, n = 172) and adolescents (15- and 16-year-olds, n = 185). Despite parent and child reporters providing internally consistent responses in the General Happiness single-item scale and the Oxford Happiness Questionnaire-Short Form, their perceptions about children's and adolescents' general happiness did not correlate. Parents of 10- and 11-year-olds significantly overestimated children's happiness, supporting previous literature on the parents' positivity bias effect. However, parents of 15- and 16-year-olds showed the reverse pattern by underestimating adolescents' happiness. Furthermore, parents' self-reported happiness or well-being (reported 6 months later) significantly correlated with their estimations of children's and adolescents' happiness. Therefore, these results suggest a potential parents' "egocentric bias" when estimating their children's happiness. These findings are discussed in terms of their theoretical and applied implications for research into child-parent relationships.

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There is ongoing debate about the reliability of parental reports on child victimization. Some studies have shown that they are useful, whereas some others have provided contrary evidence suggesting that parents are not accurate in reporting child victimization, especially when they are the one who inflicted the violence. This study aimed to (a) examine the reliability of parental reports of adolescents' experiences of victimization, including that inflicted by parents as well as others, by comparing them with self-reports using a parent-child matched sample from China; and (b) explore the possible reasons underlying any disagreement between the parental and adolescent reports. A total of 2,624 parent-adolescent pairs were recruited during 2009 and 2010 in 6 cities in China. Parents were asked to report the victimization experiences of their child using of the Juvenile Victimization Questionnaire, and these reports were matched with the adolescents' self-reports of victimization. Low levels of parent-adolescent agreement in reporting were found (Cohen's kappa=.04-.29). Except for sexual violence, parents were significantly less likely to report all types of victimization. Overall, lower levels of agreement were found in the reporting of (a) less severe types of victimization, (b) victimization outside the family, and (c) victimization involving parents as perpetrators. Intimate partner violence between parents was significantly associated with discrepancies between reports. The findings suggest that parents might not be reliable as a single source of information on certain types of adolescent victimization.

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This study examined the convergence and divergence in mothers' and children's reports of maternal support following disclosures of childhood sexual abuse (CSA). One hundred and twenty mothers and their children (ages 7-17 years) reported on two aspects of support following CSA disclosures: mothers' belief in the child's disclosure and parent-child discussion of the abuse incident. Whereas 62% of mothers' and children's reports on mothers' belief of the disclosure positively converged (i.e., both reported that mothers "completely believed" the child's disclosure), 37% of mothers' and children's reports diverged, and the remaining 1% negatively converged (i.e., both reported that the mother only believed the child "somewhat"). Positively convergent responses were associated with youths' lower risk for tobacco and illicit drug use. Forty-four percent of mothers' and children's reports on whether details of the CSA were discussed positively converged (i.e., both reported that details were discussed), 33% diverged, and 23% negatively converged (i.e., both reported that details were not discussed). Relative to other patterns of reporting, negatively convergent responses were associated with higher levels of trauma symptoms. Findings have implications for identifying high-risk mother-child dyads based on patterns of informant reporting following CSA.

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The progression of Duchenne muscular dystrophy is expected to negatively influence the patients' health-related quality of life, but knowledge of the relationship with disease severity is limited. We investigated the relationship between health-related quality of life (KIDSCREEN-52 questionnaire) and disease severity (clinical assessments of body functions and activities) in 40 boys with Duchenne muscular dystrophy (19 ambulant, 21 wheelchair dependent) who were in different phases of the disease and underwent life-limiting events such as the loss of the ability to ambulate and the ability to lift the arms. In addition, we compared boys' health-related quality of life perceptions with that of their parents. The participants' health-related quality of life was similar to healthy peers' and not influenced by disease severity, except for the physical domain. Parents scored much lower than the boys on the KIDSCREEN-52 domains Self Perception, Moods and Emotions, and Bullying. The latter finding needs attention in the management of Duchenne muscular dystrophy.

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Objective To explore agreement between parent-child report of self-rating scale of systemic family dynamics (SSFD),as well as factors that may influence the agreement.Methods SSFD was used to investigate the agreement between parent and child reports on family dynamics in a sample of 639 Chinese children aged 10 to 18 years from Mainland China,and possible influence factors.Results The results showed that there was significant difference between parent-child report of SSFD.The parents had significant lower score than their children at atmosphere,individuation and disease conception and had higher score at system logic (all P＜0.01).But the two still had significant positive correlation (correlations ranging from 0.15 to 0.38),indicating a low to moderate agreement between them(r=-0.15-0.38,all P＜0.01).The age factor was related to parent-children agreement on SSFD.Parent-child agreement was highest for family atmosphere,followed by individuation,system logic and disease conception.The age factor was related to parent-child agreement on SSFD.Conclusions Both parents' and children's reports of SSFD can be used to assess family dynamics,however,attention should be payed to the affection of parent-child report's difference and age factor to the results.

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La presente investigación se propone como objetivo final la adaptación conceptual, ling³ística y métrica de un instrumento psicométrico, el Healthy Pathways Child-Report Scales (Bevans, Riley & Forrest, 2010), concebido para la evaluación de la salud autopercibida en niños y adolescentes tempranos. La meta de este trabajo, en particular, es dar cuenta de los resultados obtenidos durante los primeros pasos del proceso de validación transcultural, en una muestra de sujetos escolarizados de entre 8 y 14 años (Mediaedad=11 años; DE= 2) de la Ciudad de Buenos Aires.Como primera medida se realizó una traducción (inglés/español) de los ítems de la prueba, concretada por dos técnico-científicos de inglés, con lengua materna española. En la segunda etapa, se efectuaron entrevistas cognitivas a 30 niños y adolescentes, con el fin de evaluar la comprensión gramática y conceptual de los reactivos del instrumento. Al mismo tiempo se verificó si el período recordatorio solicitado, así como la extensión de las escalas, era adecuada para las características de los sujetos del medio local.Los resultados sugieren que es necesario redefinir las edades cronológicas a partir de las cuales puede comprenderse el contenido de los reactivos, el manejo de las nociones temporales, así como la cantidad de preguntas que componen la prueba.(AU)

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La presente investigación se propone como objetivo final la adaptación conceptual, lingüística y métrica de un instrumento psicométrico, el Healthy Pathways Child-Report Scales (Bevans, Riley & Forrest, 2010), concebido para la evaluación de la salud autopercibida en niños y adolescentes tempranos. La meta de este trabajo, en particular, es dar cuenta de los resultados obtenidos durante los primeros pasos del proceso de validación transcultural, en una muestra de sujetos escolarizados de entre 8 y 14 años (Mediaedad=11 años; DE= 2) de la Ciudad de Buenos Aires.Como primera medida se realizó una traducción (inglés/español) de los ítems de la prueba, concretada por dos técnico-científicos de inglés, con lengua materna española. En la segunda etapa, se efectuaron entrevistas cognitivas a 30 niños y adolescentes, con el fin de evaluar la comprensión gramática y conceptual de los reactivos del instrumento. Al mismo tiempo se verificó si el período recordatorio solicitado, así como la extensión de las escalas, era adecuada para las características de los sujetos del medio local.Los resultados sugieren que es necesario redefinir las edades cronológicas a partir de las cuales puede comprenderse el contenido de los reactivos, el manejo de las nociones temporales, así como la cantidad de preguntas que componen la prueba.

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