Parent Proxy-report Research Articles

Health-related Quality of Life in Children and Adolescents After Successful Treatment of Chronic Hepatitis C With Sofosbuvir/Velpatasvir: One-year Outcomes.

The aim of this study was to assess the health-related quality of life (HRQL) of children with chronic hepatitis C (CHC) at 1 year after the effective treatment with sofosbuvir/velpatasvir (SOF/VEL). All 50 patients treated for CHC with a fixed dose SOF/VEL in the noncommercial, nonrandomized, open-label PANDAA-PED study achieved sustained virologic response at 12 weeks after the end of treatment. Evaluation of HRQL at 1-year posttreatment was compared with the baseline (before the treatment) assessment. KIDSCREEN-27 questionnaires, which included 5 dimensions of HRQL, for child self-reporting and parent proxy reporting were used. The normal range for the population was set to T values of 40-60 points. Child-parent agreement was analyzed using the intraclass correlation coefficient (ICC). Mean T values were within the normal range for all HRQL dimensions. A significant improvement in "autonomy & parent relation" in children's self-assessment (from 48.3 to 51.5, P = 0.03) was observed. In parent proxy assessment, a significant decrease occurred in "school" dimension (from 49.5 to 45.8, P = 0.03), which was not revealed at 3-month posttreatment. Older age was associated with worse HRQL scores in all dimensions. Evaluation of the ICC for child self-reports versus parent proxy reports revealed poor-to-moderate agreement for most single measures, lower than at 3-month posttreatment analysis. This is the first study to present the long-term influence of treatment with direct-acting antivirals on patient-reported outcomes in children. At 1 year after effective treatment with SOF/VEL, an improvement in some areas of children's well-being was revealed, which may indicate also some patient-reported outcomes benefits of direct-acting antiviral therapy. Despite the improvement in the child self-report of "autonomy & parent relation," there was a more pronounced discrepancy between children self-reports and parents proxy reports in all dimensions of HRQL. Older patients' age correlated with worse HRQL assessment. If this finding is mediated by the duration of hepatitis C virus infection, it would support recommendation for the treatment of younger children.

Screening and Impact of Neuropathic Pain in Young Individuals With Sickle Cell Disease.

To assess the frequency of neuropathic pain (NP) and its impact in young patients with sickle cell disease (SCD). We used the ID-Pain (ID-P) questionnaire and a bedside clinical sensory testing (CST) as screening tools for NP and performed sensory nerve conduction study (SNCS) for all the participants. The impact of pain was assessed using Patient-Reported Outcomes Measurement Information System (PROMIS) questionnaires and Pediatric Quality of Life Inventory (PedsQL) SCD module. The mean age was 12.4years. The ID-P questionnaire revealed that 20.5% of patients likely had NP, while 10 (34%) of the participants had abnormal CST, and only two patients (4.5%) had abnormal SNCS. On the PROMIS pain scores, the mean pain intensity score was 7.9 ± 2.0. Pain interference was the most affected domain in both patients and parent proxy reports (mean ± SD T-score 63.4±6.6 and 65.2 ± 6.6, respectively) which was worse than other domains including pain quality-sensory and affective, and pain behavior (median T-scores of 47.8, 63.0, and 56.2, respectively). The mean global health-related quality of life (HRQoL) score of the children was 50.3 ± 12.1 indicating poor quality of life. We report the utility of simple tools like ID-P questionnaire and CST for screening of NP in young individuals with SCD.

Nonverbal Skills Evolution in Children with Autism Spectrum Disorder One Year Post-Diagnosis

Background: Gestural production, a crucial aspect of nonverbal communication, plays a key role in the development of verbal and socio-communicative skills. Delays in gestural development often impede verbal acquisition and social interaction in children with Autism Spectrum Disorder (ASD). Although various interventions for ASD focus on improving socio-communicative abilities, they consistently highlight the importance of integrating gestures to support overall communication development. This study aimed to investigate the progression of gestural production in preschoolers with ASD one year post-diagnosis, taking into account whether they had received interventions for ASD. Method: This study followed 76 Italian preschoolers with ASD, aged 2 to 4 years, who underwent three different types of interventions or no intervention at all. Data on gestural production were collected using the MCDI, a standardized parent-proxy report. Results: The results indicate that all groups, regardless of intervention type, experienced increased gesture production, suggesting that interventions, combined with factors like time, symptom severity, and learning differences unique to ASD, positively influence nonverbal communication. This improvement may be due to various factors. On one hand, joint attention and socio-communicative interactions drive progress, while on the other, children with ASD may benefit from learning through non-socially mediated linguistic material. Conclusions: These findings highlight the need to understand individual learning preferences and strategies for developing nonverbal communication skills in children with ASD. Identifying effective strategies early on can enhance both diagnosis and intervention planning, ensuring they are tailored to the specific developmental needs of each child.

Sleep Problems and Quality of Life in Children with Epilepsy Without Neurodevelopmental Disorders.

Background/Objectives: Sleep problems affect the quality of life (QoL) and treatment prognosis of children with epilepsy (CWE). We analyzed sleep problems and QoL in CWE but without neurodevelopmental disorders, which affect sleep and QoL. We also examined discrepancies between child self-reports and parent proxy reports in QoL assessments. Methods: Thirty-two CWE in grades 2-6 (aged 7-12 years) in regular classes who attended Osaka Metropolitan University Hospital and PL General Hospital between January 2022 and August 2023 were compared with 21 children who had attended the hospitals for acute non-neurological disorders and had recovered (control group). Children with neurodevelopmental disorders, those unable to answer questionnaires, and those taking sleeping pills were excluded. Children in both groups completed the Kinder Lebensqualität Fragebogen (KINDL-R); their parents completed the KINDL-R and Japanese Sleep Questionnaire for Elementary Schoolers (JSQ-ES). Results: There were no significant differences in mean (±SD) JSQ-ES total scores between the epilepsy and control groups (71.6 ± 21.4 vs. 63.2 ± 15.2, respectively; p = 0.16). In the epilepsy group, there were no significant differences in total or subscale KINDL-R scores between children with (JSQ-ES ≥ 80) and without (JSQ-ES < 80) sleep problems. Correlation coefficients between child self-reports and parent proxy reports for KINDL-R total scores were 0.171 (p = 0.348) and 0.656 (p = 0.001) for the epilepsy and control groups, respectively. There was a significant difference between the total scores of children's self-reports and parents' proxy reports in the control (p = 0.008) group, but not in the epilepsy group (p = 0.837). Conclusions: Sleep problems may not have significant impacts on the QoL of CWE without neurodevelopmental disorders. Parents of CWE do not always correctly assess their children's QoL, so it is important to ask both children and their parents to obtain a comprehensive picture of their QoL.

QOL-08. HEALTH-RELATED QUALITY-OF-LIFE (HRQOL) IN ADULTS AND CHILDREN WITH NEUROFIBROMATOSIS TYPE 1-ASSOCIATED PLEXIFORM NEUROFIBROMA (NF1-PN) TREATED WITH MIRDAMETINIB: PIVOTAL, PHASE 2B RENEU TRIAL

Abstract Patients with NF1-PN experience pain and other symptoms that negatively impact functioning and quality-of-life. We present patient- and parent proxy-reported HRQoL outcomes from ReNeu (NCT03962543), a pivotal, phase 2b trial of mirdametinib, an investigational MEK1/2 inhibitor, in adults and children (≥2 y) with NF1-PN causing morbidities. Fifty-eight adults and 56 children received mirdametinib (2 mg/m2 BID; 3-weeks-on/1-week-off, 28-d cycles). Change in HRQoL was assessed by Pediatric QoL Inventory (PedsQL) 4.0 Generic Core Scales from baseline across the 24-cycle treatment phase; change from baseline at Cycle 13 (C13) was a prespecified secondary endpoint. PedsQL is a HRQoL measure for adults and children with a Total Score (TS) and 4 subscales: physical, emotional, social, and school/work. Items are reported on a 0-100 scale (higher scores=better HRQoL). Clinically meaningful improvement was defined as change from baseline &amp;gt;9.7 points for adults, &amp;gt;8.5 points for child self-report, and &amp;gt;9.0 points for parent proxy-report. PedsQL-TS improvement (least-squares mean, LSM [SE] change) from baseline at C13 was 3.9 (1.6; P=.018; n=34) for adults, 4.0 (2.4; P=.096; n=38) for children by self-report, and 5.6 (1.9; P=.005; n=43) by parent proxy-report. PedsQL-TS improvements for adults and children by parent proxy-report (not by children self-report) were observed early (at C5 and C3, respectively) and sustained through C24. Clinically meaningful improvement in PedsQL-TS from baseline at C13 was achieved by 37% (10/27) adults, 45% (13/29) children by self-report, and 47% (15/32) children by parent proxy-report (among patients who could have achieved a clinically meaningful change from baseline). Significant (P&amp;lt;.05) improvement from baseline to C13 was reported for physical (adults, children, and parent proxy-report), school/work (adults), and emotional and social (parent proxy-report) subscales. Adults and children (by parent proxy-report) with NF1-PN had clinically meaningful, early, and sustained improvement in HRQoL over the course of mirdametinib treatment.

Health-Related Quality of Life Among Discharged Patients With Hemophagocytic Lymphohistiocytosis: A Follow-Up Study.

Evaluating the post-discharge health-related quality of life (HRQoL) in hemophagocytic lymphohistiocytosis (HLH) and exploring its influencing factors. The study was conducted at a regional pediatric medical center and involved pediatric patients diagnosed with HLH between July 2017 and July 2022. Healthy children of the same age and sex were included as the control group. The HRQoL and its associated factors in pediatric patients were assessed using the PedsQL 4.0 Parent Proxy Report and a general information survey. In the first year following diagnosis, psychological health and overall score in HLH patients were worse than those of the control group. However, scores for emotional functioning, school functioning, physical health, psychosocial health, and overall scores in the HLH group increased over the years since diagnosis. By the 5-year post diagnosis, there were no significant differences between the HLH group and the control group in social functioning, school functioning, physical health, psychosocial health, and overall scores (p>0.05). Generalized linear model analysis revealed that HLH patients who underwent transplantation have worse social functioning, physical health, overall score, while HLH patients with HLH recurrence have worse social functioning, psychosocial health, overall score (p<0.05). The HRQoL of HLH patients is compromised after discharge; however, it progressively returns to levels comparable to those of healthy cohorts over time since diagnosis. Transplantation, and HLH recurrence are identified as factors affecting the HRQoL in HLH patients.

Health related quality of life and associated factors among children living in previous leprosarium and nonleprosarium areas of Eastern Ethiopia

Children and their families living in leprosarium areas may have a lower quality of life than the general population. However, there is limited evidence on health-related quality of life and its associated factors among children living in previous leprosarium settlement areas. Hence, this study aimed to compare the health-related quality of life among children living in previous leprosarium and non-leprosarium settlement areas in eastern Ethiopia. A community-based comparative cross-sectional study was conducted among 515 randomly selected children aged 8 to 18 years living in the Amir Nur and Babile districts from January to February 30, 2024. Data were collected through interviews with children and parents using the Pediatric Quality of Life Inventory Version 4. The data were analyzed using STATA version 14. Simple and multiple linear regression was employed to identify associations between independent and outcome variables. The overall mean health-related quality of life scores were 73.98 ± 18.47 and 77.67 ± 14.72 in the child self-reports (P = 0.01) and 55.78 ± 12.03 and 55.61 ± 8.50 (P = 0.85) in the parent proxy reports in the previous leprosarium and nonleprosarium settlement areas, respectively. In multiple linear regression, child education (β = 14.69; 95% CI: 8.69, 20.69), the absence of neglected and tropical diseases (β = 4.02; 95% CI: 0.66, 7.37), and child face washing habits (β = 5.54, 95% CI: 2.14, 8.95) increase health-related quality of life. However, a previous history of neglected and tropical diseases (β = -8.54; 95% CI: -12.93, -4.15) and the absence of hand washing facilities (β = -8.57; 95% CI, -15.22, -1.92) decrease the mean health-related quality of life. Based on child self-reports, one in four children from previous leprosarium areas had poor health-related quality of life compared to children living in none leprosarium areas. Children’s educational status, their daily habits of washing their face, not having neglected, and tropical diseases had improved health-related quality of life. To improve health-related quality of life, stakeholders should pay attention to and work on the early detection and treatment of neglected and tropical diseases, child education, and proper sanitation practices in the leprosarium community.

Validity and Reliability of the Peds QLᵀᴹ 4.0 Generic Core Scale in Indonesian Version in Children with Chronic Kidney Disease Undergoing Hemodialysis in the Dialysis Unit of Cipto Mangunkusumo Hospital

Background: The Peds QLᵀᴹ 4.0 Generic Core Scales is a modular instrument for measuring health-related quality of life (HR-QoL) in children and adolescents aged 2 to 18 years. The Peds QLᵀᴹ 4.0 GCS consists of 23 items applicable to healthy school and community populations and populations of children with acute and chronic health conditions. The Pediatric Quality of Life Inventory (Peds QLᵀᴹ 4.0 Generic Core Scales) is a modular instrument designed to measure health-related quality of life (HR-QoL) in children and adolescents aged between two and thirteen years. It measures health-related quality of life (HR-QoL) in children and adolescents with progressive chronic kidney disease (CKD), regardless of the underlying etiology, due to the need for regular follow-up visits, strict medication regimens, and dietary intake. Purpose: This study aimed to evaluate the validity and reliability of the Peds QLᵀᴹ 4.0 GCS Indonesian version in children with CKD undergoing hemodialysis (HD) in the Dialysis Unit of Cipto Mangunkusumo Hospital. Methods: This type of research is analytical and observational in nature. The Peds QLᵀᴹ 4.0 GCS were administered to 30 children and 30 parents recruited from a pediatric dialysis unit. This study was conducted at a pediatric dialysis unit at Cipto Mangunkusumo Hospital Jakarta, Indonesia, in Mei-Juni 2024. Validity was tested using Pearson product moment, and reliability was tested using Cronbach's alpha. Results: A total of 30 children and 30 parents undergoing hemodialysis agreed to participate. The average age of the patients was 8–18 years old. Cronbach’s alpha coefficient for the total Peds QLᵀᴹ 4.0 GCS (α child self-report 0.918; α parent proxy report 0.928). Conclusion: The Indonesian versions of The Peds QLᵀᴹ 4.0 GCS were valid and reliable instruments to measure the HR-QoL of children with CKD on hemodialysis. The Peds QLᵀᴹ 4.0 GCS can be applied to provide relevant evidence that helps the function of quality of life among Indonesian patients on hemodialysis in evaluating health programs.

An evaluation of health-related quality of life and its relation with functional vision in children with cerebral visual impairment

Health-related Quality of Life (HRQOL) and its relation with functional vision is understudied in cerebral visual impairment (CVI). Characterising HRQOL, comparing child self- and parent proxy-reports, and exploring relations with functional vision. Seventy-three children with CVI (n females = 33; n males = 40; Mean performance age = 7y2m) were included. HRQOL was measured with Pediatric Quality of Life Inventory (PedsQL) child self- and parent proxy-reports and compared using Wilcoxon signed-rank tests. Risk for impaired HRQOL was evaluated using cut-off scores. Parents scored functional vision using the Insight Questions Inventory and the Flemish CVI Questionnaire. 61 % (self-reported) or 66 % of children (proxy-reported) were at-risk for impaired total HRQOL. Ratings were correlated (rs = 0.305; p = 0.013); however, children rated higher total HRQOL compared to parent-proxy (r = 0.382; p = 0.002). The Insight Questions Inventory and the PedsQL proxy-report were correlated (rp = -0.454; p < 0.001), the Flemish CVI Questionnaire was negligibly correlated (rp = -0.244; p = 0.041). HRQOL is reduced in CVI, and both child and parent perspectives are crucial. HRQOL and functional vision are intricately related, and impairment in one negatively affects the other.

Health-related quality of life of toddlers during and after cancer treatment

Health-related quality of life of toddlers during and after cancer treatment

Quality of life in childhood immune thrombocytopenia: Revision of the Kids' ITP Tools (KIT).

The Kids ITP Tools (KIT) is a health-related quality of life (HRQoL) questionnaire that evaluates quality of life in children with immune thrombocytopenia (ITP). There are three formats: Child Self-Report, Parent Proxy-Report and Parent Impact-Report. This study aimed to develop a domain structure by grouping-related questions from the questionnaire into domains that independently reflect various aspects of HRQoL. The study was conducted in two phases. Phase 1 involved an online survey distributed to experts to identify conceptual domains for the KIT. Phase 2 utilized a statistical approach to analyse responses from patients with ITP and their families. A revised KIT 2.0 was ultimately developed to aid in treatment decision-making and monitoring of ITP.

Alignment of parent-proxy report and teen self-report of adverse childhood experiences among U.S. teens

Data on adverse childhood experiences (ACEs) among teens is collected using a single informant, a parent-proxy, or teen self-report. Little is known about alignment between these approaches. Surveys were administered online to teens ages 15-17 and their parents (n=522 dyads) using the AmeriSpeak panel. We present descriptive statistics on the prevalence and measures agreement for 18 ACEs based on teen self-report and parent-proxy report. We fit multivariable models examining associations between teen and household demographic characteristics and discordance in ACE report. Based on teen-self report and parent-proxy report, cumulative and individual ACE prevalence was overall similar. However, discordance was found in individual ACE reports within teen-parent dyads (discordance ranged: 2.9-21.2%). Lowest agreement was among ACEs related to abuse, neglect, and violence victimization and highest among household challenges. Furthermore, parent-teen dyads with LGB+youth (vs. heterosexual) and Black, Hispanic, and multiracial or another race (vs. White) youth were more likely to have discordant responses among several ACEs. Surveillance and programmatic efforts should consider the type of ACE and the reporter when using data to inform prevention strategies. Teen self-report for abuse, neglect, and violence victimization and community challenges ACEs are particularly important to capture.

Development and validation of a short version of the quality of life-DSD questionnaire for parents of young children with conditions affecting sex development.

There is a paucity of information on health-related quality of life (HRQoL) outcomes in parents and children with conditions affecting sex development. The objective of this study was to develop short forms of HRQoL questionnaires which consist of a 63-item and 25-item parent self-report (PSR) and parent proxy-report (PPR), respectively, optimizing use in routine clinical settings. Short questionnaires were developed following exploratory factor analysis using raw data from 132 parents. Long and short PSRs were completed by 24 parents of children with conditions affecting sex development, with a median age of 3.6 years (range 0.1, 6.6); 21 (88%) were boys, and 11 (46%) had proximal hypospadias. A subset of 19 parents completed both long and short PPRs. Item selection, based on factor loadings of >0.8 and expert consultation, produced short PSRs and PPRs containing 16 and 7 items, respectively. There was no statistically significant difference in 11 out of 12 (92%) scales on the PSR and 4 out of 5 (80%) scales on the PPR when comparing short and long questionnaire scores. The short and long questionnaires took <1 min and 5 min to complete, respectively. Eighteen parents (75%) reported that the time taken to complete the short questionnaires was acceptable; 10 (42%) preferred short questionnaires. Ten (42%) versus 6 (25%) stated a preference for completing the short versus long questionnaires. The short versions were largely representative of the long questionnaires and are acceptable for evaluating psychosocial distress in young children and their caregivers. Further psychometric validation of the short forms is warranted.

“Gastrointestinal Quality of Life After Congenital Duodenal Obstruction Repair: A Nationwide Long-term Follow-up Study”

Congenital duodenal obstruction (CDO) is one of the most common gastrointestinal congenital anomalies. Still, patient-reported long-term results are limited. The aims of this study were to evaluate the long-term gastrointestinal quality of life (QoL), generic QoL, patient-reported scar appearance, and reinterventions after CDO repair. Patients who underwent surgery for CDO in Norway from 1995 to 2020 were invited to answer the validated questionnaires PedsQL and PedsQL gastrointestinal symptom scale and a study-specific questionnaire on general health and scar assessment. Parent-proxy reports were used for patients <12 years and patients with cognitive impairment. Scores were compared with an American and Norwegian control group for gastrointestinal and generic QoL, respectively. Of 186 eligible patients, eight were deceased, 25 had unretrievable contact information, and 79 did not respond. There were no significant differences between included (n=74) and not included (n=112) patients regarding baseline data. The mean follow-up time was 13.3 (SD=6.6) years. Patients with CDO had significantly lower overall gastrointestinal QoL than controls (85.9 versus 90.0, p=0.010). The most common symptoms were gas/bloating, constipation, food/drink limits, and reflux. Generic QoL was similar between the CDO population and controls (84.4 versus 85.3, p=0.530). Twenty-one (28%) patients had some degree of pain and/or concern related to the surgical scar. Nine (12%) patients had reoperations related to the CDO repair; four due to adhesive small bowel obstruction. A notable portion of patients report troublesome gastrointestinal symptoms and cosmetic concerns regarding their surgical scar after CDO repair. Even so, generic QoL was good. IV.

Comparative analysis of health-related quality of life between children with bladder and bowel dysfunction versus lower urinary tract dysfunction and healthy controls.

This study aimed to compare health-related quality of life (HRQoL) between children with bladder and bowel dysfunction (BBD) and lower urinary tract dysfunction (LUTD) alone and healthy controls based on self-report forms and parent-proxy report forms. In this retrospective study, clinical records were reviewed. Children with LUTD, with or without bowel dysfunction, and healthy children were included in this study. The dysfunctional voiding scoring system and Rome IV Diagnostic Criteria were used to assess lower urinary tract symptoms. The Rome IV Diagnostic Criteria was also used to evaluate bowel symptoms. The Pediatric Quality of Life Inventory 4.0 (PedsQL) questionnaire was administered to investigate pediatric HRQoL. Of the total 252 children (mean age, 7.3±2.1 years) who participated in this study, 78 were classified into the BBD group and 174 into the LUTD group. Compared with the control group, the BBD group had significantly lower total PedsQL scores (p<0.001) and psychosocial healthy summary scores (p<0.001). The BBD group had significantly lower emotional functioning scores than the LUTD group (p=0.023). Children with BBD who presented with fecal incontinence (FI) had a significantly lower social functioning score than those without FI (p=0.023). Children with BBD who present with FI are at higher risk of decreased psychosocial HRQoL, and they require special emotional support. These findings underscore the need for effective treatment and follow-up to improve the HRQoL of children with BBD who presented with FI.

Stigma, seizure self-efficacy, and quality of life in children with epilepsy.

In addition to seizure care, it has been well-established that a holistic approach to the treatment of children with epilepsy that addresses the social, behavioral, and psychological dimensions also benefits their quality of life (QoL). The aim of this study was to investigate the patient and parental perceived stigma, seizure self-efficacy of children with epilepsy, and the relationship with quality of life in terms of sociodemographic and epilepsy-related factors. The study group consisted of children, aged between 8 and 18years and with a diagnosis of epilepsy of at least six months duration and their parents. Pediatric Quality of Life Inventory (PedsQL), Child-Parent Stigma Scales, and the Seizure Self-Efficacy Scale for Children (SSES-C) were used for evaluation. One hundred and forty-four children (mean age 12.6 ± 2.9years) took part, of whom 48.6% were female. The mean Child Stigma Scale score was 1.77 ± 0.82, Parent Stigma Scale score 2.41 ± 0.75, SSES-C score was 3.37 ± 0.98, and PedsQL score was 72.8 ± 18.6 for children self-reports (CsR) and 73.2 ± 18.8 for parent proxy-reports. The intraclass correlation coefficient for parent-child PedsQL indicated a good level of agreement. There was a significant negative correlation between the Child Stigma Scale and the PedsQL-CsR scores. A significant positive correlation was identified between the SSES-C scores and the PedsQL-CsR scores. Perceptions of stigma in children with epilepsy and their parents were high in this study population. Of note, the elevated stigma perception reported by the patients had a detrimental impact on seizure self-efficacy. This relationship may affect the children's QoL and further complicates epilepsy management in this patient group.

Intradyadic Correlation Between Parent-reported and Child-reported Quality of Life in Patients With Anorectal Malformation and Hirschsprung's Disease in Comparison to Healthy Controls

Quality of life (QOL) is an important clinical endpoint in paediatric chronic conditions. How parent-proxy reports differ from child self-reported QOL in patients with anorectal malformation (ARM) and Hirschsprung's disease (HD) has not been well examined to date. This study evaluates agreement between parent-proxy and child-reported QOL scores in ARM and HD patients compared to healthy controls. We recruited ARM and HD patients aged 5-17 years and their parents at four tertiary referral centres between December 2020 to February 2023 who had corrective surgery done >12 months prior. Healthy controls were age-matched and gender-matched. They completed the Pediatric Quality of Life Inventory™ (PedsQL™) Generic Core Scales and General Well-Being (GWB) Scale. The questionnaires were administered in parallel parent-proxy-report and child self-report formats. Appropriate statistical analysis was performed with p<0.05 significance. Data are reported as median (interquartile range). Ethical approval was obtained. There were 65 ARM, 54 HD and 83 controls. There were no significant differences between parent-reported scores and child-reported scores overall in the Total, Psychosocial Health and Physical Health components of Core Scales for ARM, HD and controls. However, parent-reported scores were significantly higher than child-reported scores overall in ARM, HD and controls in the GWB Scale. Our findings show that parent-rated and child-rated overall QOL was similar in Core Scales for ARM, HD, and controls. However, parents overestimated child's overall GWB for ARM, HD and controls. This highlights the importance of capturing the perspectives of both parents and children to inform strategies to improve patient care. Level III.

Agreement between child self-report and parent-proxy report for functioning in pediatric chronic pain

PurposeAccurate assessment of chronic pain and functional disability in children and adolescents is imperative for guiding pain management interventions. Parents have multifaceted roles in their child’s pain experience and frequently provide parent-proxy reports of pain-related functioning. However, cross-informant variance is often observed with limited understanding of contributing factors. This study aims to examine the degree of alignment between child and parent-proxy reports for Patient-Reported Outcomes Measurement Information System (PROMIS) pain interference domain among children with chronic pain and to identify factors associated with improved child-parent agreement.MethodsThis study includes a sample of 127 youth (66.1% female) with mixed etiology chronic pain, ranging in age from 8 to 17 (M = 12.24; SD = 1.598), and their parent. Data was collected at an interdisciplinary pediatric pain clinic and online peer support groups. Measures of demographic, pain intensity, and functioning were collected.ResultsMeans of parent-proxy reports were significantly lower than child self-reports on the PROMIS (p < 0.05). A statistically significant association between child’s pain intensity (β = 0.953, P < 0.05) and the difference between child self-reported and parent-proxy reported PROMIS functional interference scores was found.ConclusionParents underestimated pain-related functional disability relative to children’s self-reports. The difference between the paired child self-report and parent-proxy report of functional disability was significantly associated with greater child self-reported pain intensity. Although parent-proxy reports in pediatric chronic pain is often used in research and practice, findings underscore the importance of incorporating child and adolescent self-report, when possible, to comprehensively capture the child’s pain experience and best inform clinical interventions.

The Swedish PedsQL gastrointestinal symptoms scale and symptoms module showed good psychometric performance.

There is no validated symptom scale for Swedish children with gastrointestinal disorders. Our aim was to validate the Swedish version of the Paediatric Quality of Life Inventory (PedsQL) gastrointestinal symptoms scale and symptoms module. Families were recruited from two hospitals in Gothenburg, Sweden, from 1 March 2021 to 31 October 2022. The instruments were completed by 115 children with functional, congenital or organic acquired gastrointestinal disorders and 149 of their parents. These were the gastrointestinal symptoms scales, symptoms module and the 4.0 Generic core scale. Data were analysed for feasibility, construct validity and reliability, including internal consistency, re-test reliability and child-parent agreement. Feasibility was good, with a failure to respond of ≤5%. Construct validity showed strong correlation in the PedsQL gastrointestinal symptoms module. The known-group validity agreed with the expectations associated with the disease characteristics (p < 0.05). Cronbach's alpha was 0.96, which indicated excellent internal reliability. The intraclass correlation coefficient for the child self-report and parent-proxy report was 0.74, which indicated good agreement. The Swedish PedsQL Gastrointestinal Symptoms Scales, the symptoms module provided acceptable measurement properties and can be used to evaluate symptoms of gastrointestinal disorders and quality of life during clinical work or research projects.

Health-related quality of life among pediatric patients with acute lymphoblastic leukemia: An exploratory cross-sectional study.

Improved survival rates broadened the pediatric oncology focus to include health-related quality of life (HRQoL). This cross-sectional study aimed to examine HRQoL by treatment phase and disease risk level in pediatric patients with B-cell acute lymphoblastic leukemia (B-ALL), including those in early survivorship. A subset of data from a larger prospective cohort study was analyzed. Data were collected from 73 patients (73 parent reports and 28 self-reports). Parent proxy and self-report PROMIS measures assessed HRQoL across treatment phases (early intensive, maintenance, and off treatment) and disease risk groups (standard vs high). Analyses assessed the relationship between parent proxy and patient self-reports and the differences in HRQoL among treatment phases and risk groups. Parent proxy reports generally indicated worse fatigue, pain interference, and mobility compared with patient self-reports. Self-reports in the early intensive treatment group suggested worse depressive symptoms, fatigue, mobility, and upper extremity function compared with those in later phases. Parent proxy reports showed worse fatigue and depressive symptoms in early intensive treatment group relative to those in later phases. Patient self-reports in the maintenance group demonstrated the best peer relationships scores. Parent proxy reports in the high-risk group reported significantly higher depressive symptoms and fatigue compared with the standard-risk group. Differences in HRQoL suggest targets for further assessment and intervention. The early treatment and immediate post-survivorship periods may represent particularly critical time points. Longitudinal studies with larger and diverse samples should further explore HRQoL trajectories in this population.