The Effect of Insight Questions Inventory and Visual Support Strategies on Carer-Reported Quality of Life for Children With Cerebral Palsy and Perceptual Visual Dysfunction in Nigeria: A Randomized Controlled Trial

Structured clinical history question inventories have previously been used to try and elicit symptoms of perceptual visual dysfunction (PVD) in children with cerebral palsy (CP) in different settings. Earlier studies have suggested that PVD may affect quality of life and specific habilitational strategies, linked to inventory responses, may improve quality of life. Through an RCT, based on a community based sample of children with CP in Cross River State, Nigeria, we aimed to determine if a structured history inventory such as the Insight question inventory (IQI) and associated tailored visual support strategies (IQI VSS) for the management of those children who have PVD, can improve quality of life and is superior to standard therapy. Children with CP were recruited by the key informant method and confirmed by clinical examination. The parent reported IQI was used to identify children with PVD. Primary outcome measures were both Pediatric Quality of Life 4.0 Generic (PedsQL 4.0 Generic) and Pediatric Quality of Life 3.0 Cerebral Palsy (PedsQL 3.0 CP) scale scores. Children were enrolled with a parallel arm allocation to either IQI and IQI VSS or to standard therapy for CP. Children were followed up for 6 weeks with weekly phone call session and the questionnaires repeated at the end of the 6 weeks’ period. Results show that the children in the treatment group (n = 191) showed no significantly different change between baseline and follow up in quality of life (PedsQL 4.0 Generic p = 0.943: and PedsQL-CP 3.0 p = 0.287), compared to the control group. There was suggestion of a better improvement (p = 0.035) in the PedsQL 3.0 CP subscale of speech and communication for the intervention group. The use of IQI VSS for the treatment of PVD in children with CP in this population does not show any superiority over current standard CP management in terms of overall quality of life. However, there was some evidence of improvement in quality of life in the area of speech and communication. Further research and refinement of these management method is required.Clinical Trial Registration:www.ClinicalTrials.gov, identifier [PACTR20161200188] 6396.

CHẤT LƯỢNG CUỘC SỐNG VÀ MỘT SỐ YẾU TỐ LIÊN QUAN Ở TRẺ VỊ THÀNH NIÊN 10-15 TUỔI ĐIỀU TRỊ ARV NGOẠI TRÚ TẠI BỆNH VIỆN NHI TRUNG ƯƠNG

Mục tiêu: Mô tả chất lượng cuộc sống (CLCS) và một số yếu tố liên quan ở trẻ vị thành niên 10-15 tuổi nhiễm HIV đang điều trị ARV ngoại trú tại Bệnh viện Nhi trung ương. Đối tượng và phương pháp: Nghiên cứu cắt ngang được thực hiện trên 190 trẻ từ 10-15 tuổi nhiễm HIV đang được quản lý điều trị ARV ngoại trú tại Bệnh viện Nhi trung ương từ 6-12/2020. CLCS được đánh giá bằng công cụ PedsQL 4.0 với 23 câu hỏi liên quan đến 4 lĩnh vực về thể chất, tình cảm, xã hội và học tập. Điểm số càng cao tương ứng với CLCS càng tốt. Kết quả: Điểm trung bình CLCS chung 72,2; về sức khỏe thể chất 80,3; sức khỏe tâm lý xã hội 75,6; xã hội 82,2; cảm xúc 76,3; và học tập 68,3. Tỷ lệ CLCS tốt tính chung là 56,8%; về sức khỏe thể chất 67,9%; sức khỏe tâm lý xã hội 57,4%; về xã hội 73,2%, cảm xúc 57,9% và học tập 45,3%. Trẻ thuộc các hộ gia đình nghèo, trẻ có NCS có học vấn thấp (từ THCS trở xuống) và trẻ có thời gian từ nhà đến phòng khám từ 60 phút trở lên có CLCS thấp hơn (p<0,05). Kết luận: Trẻ vị thành niên nhiễm HIV đang điều trị ARV có CLCS cao ở hầu hết các lĩnh vực, trừ lĩnh vực học tập. Hộ gia đình nghèo, học vấn của NCS thấp và thời gian tiếp cận phòng khám dài là những yếu tố liên quan đến CLCS thấp ở trẻ vị thành niên.

Health-related Quality of Life of Children Treated for Non-syndromic Craniosynostosis

Background: Assessing health-related quality of life (HRQoL) allows acquisition of the subjective perspective of patients regarding their health and functioning; however, little is known about the experiences of patients living with treated craniosynostosis (CS). Methods: School-aged children (7–16 years) treated for non-syndromic CS were assessed using the Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core Scales via both self- and proxy reports.Results: Seventy-three patients and their parents responded to the PedsQL (response rate: 80.2%). Patients generally estimated HRQoL as high, with no difference in HRQoL found between treated sagittal (SS) or metopic (MS) synostosis. In the SS group, surgical methods involving spring-assisted surgery and pi-plasty were unrelated to HRQoL outcomes. Additionally, HRQoL was highly correlated with intelligence quotient (IQ) and adaptive behavior skills (ABAS). Furthermore, we observed differences in estimated HRQoL between self- and proxy reports (i.e., parents estimated child HRQoL as higher than did the children). Conclusions: Children treated for CS have a generally high HRQoL, and neither CS type nor surgical method influenced HRQoL outcomes. Moreover, children and parents estimated HRQoL differently, suggesting the importance of using both self- and proxy reporting in patient-reported measures. We found that HRQoL was strongly related to IQ and ABAS, indicating that the PedsQL can be used as a screening instrument to identify craniofacial patients in need of further psychological assessment.

An exploratory study of the impact of firecracker-induced hand injuries on adolescents and their parents

Background Severe hand injuries due to firecrackers are unfortunately common in the Netherlands. These injuries are expected to have long-term functional and psychological sequalae. We performed a study to assess the long-term impact of such injuries on the victims and their parents. Methods Eight sequential adolescent patients that underwent surgery for firecracker-induced severe hand injuries between September 2012 and March 2015 were included. The patient files were assessed for data on hand function. The impact of the injuries was measured by questionnaires and measure instruments: VAS for pain, CHEQ2.0 and COPM-DLV for activities and participation, PedsQL-4.0 for participation and quality of life, RSES for self-esteem, and DT-P for impact on parents. Results Seven of the eight patients underwent (partial) hand amputation. Three adolescents still reported pain at a mean of 3.2 years post-trauma. All adolescents required more time than peers performing activities. Seven showed a total of 34 activity and participation problems. One adolescent showed no problems at all. The adolescents showed a mean score of 81 on the PedsQL-4.0, which was not different to healthy adolescents. None had problematic low self-esteem. Six out of eight parents had elevated distress; three parents stated that they still needed psychological support. Conclusions Severe hand trauma due to firecrackers has an evident impact on hand function and activities in all adolescents. The injuries have a significant long-lasting psychological impact on the parents. Prolonged psychological help is recommended for the adolescents as well as their parents with a more family-centered approach. Level of evidence: Level IV, therapeutic study.

POS1325 COMPARISON OF THREE DIFFERENT ALGORITHMS FOR THE TREATMENT OF CHILDREN WITH POLYARTICULAR JIA: THE FIRST YEAR AFTER DIAGNOSIS

Background:Various treatment strategies are used for children with newly diagnosed polyarticular JIA. MTX is usually prescribed, sometimes in combination with high-dose intravenous glucocorticoid pulses (HDGC) or multiple intra-articular GC injections (IAGC). These different approaches were considered in the German consensus-based treatment protocols for polyarticular JIA1, they were also the leading therapies in patients with rheumatoid factor-negative polyarthritis (RF- PA) included in the JIA inception cohort ICON.Objectives:To compare the effectiveness of three different treatment strategies in nearly DMARD-naïve patients with RF- PA.Methods:Patients with RF- PA who were included in the ICON cohort and received one of the following treatments within the first three months were considered for the analysis: Group 1: MTX + IAGC in >4 joints, Group 2: MTX + HDGC, Group 3: MTX, no IAGC in >4 joints, no HDGC. Propensity score-adjusted group differences in outcomes after one and two years were analysed by linear and logistic regression analyses.Results:The analysis included data from 150 patients (79% female, mean age 6.7±4.8 years) enrolled in ICON 1.6±1.9 months after the diagnosis of RF- PA, of whom 52 were in Group 1, 54 in Group 2 and 44 in Group 3. Disease activity did not differ significantly between the groups at treatment start (cJADAS-10 16.7±4.7, 15.8±5.7, 15.9±6.5, respectively).Of the total group, at 1- and 2-year follow-up (FU), 60.9%/60.1% and 52.3%/58.8% of patients had inactive disease (cJADAS ≤1/Wallace criteria2), 21.3% and 35.6% were in remission off drug2, and mean cJADAS-10 scores were 2.6±3.9 and 3.0±3.5, respectively. 60.5% and 67.0% had no functional limitations (CHAQ=0).Patients in Group 1 more often had an inactive disease (according to Wallace2) at the 1-year FU and tended to have inactive disease more often at 2-year FU than patients in Group 3 (78.1% vs. 45.2%, p=0.025; 73.3 vs. 49.1%, p=0.075, respectively). Group 2 patients (inactive disease in 56.1% and 53.4% at 1- and 2-year FU) did not differ significantly from either Group 1 or Group 3. In addition, Group 1 patients had a significantly better quality of life than patients of Group 2 at the 2-year FU (mean PedsQL 4.0 total score 90.4±9.3 vs. 83.8±11.2, p=0.031). At that time, Group 3 patients had a mean PedsQL 4.0 total score of 85.0±14.6, which was not significantly different from either Group 1 or 2.On the other hand, Group 1 patients tended to develop new uveitis more frequently within the first two years of treatment than patients in Groups 2 and 3 (13% vs. 2.2% and 3.6%, p=0.101 and 0.131, respectively). At the 2-year FU, patients in Group 1 also had a significantly lower mean height SDS than patients of Group 3 (-0.3±1.1 vs. 0.2±1.1, p=0.038). Mean height SDS was lowest (-0.5±0.8) in patients in Group 2 and significantly lower than in Group 3 (0.019). Mean body mass index SDS also differed significantly between the groups at 2-year follow-up. The mean BMI SDS was highest in Group 1 patients (0.2±0.8), differing significantly from Group 2 (-0.3±0.7, p=0.014) and Group 3 (-0.4±1.1, p=0.023).There were no significant differences in inactive disease (according to cJADAS) and functional status (CHAQ) between the three groups at 1- and 2-year FU. Over time, treatments were very different in the three groups. In Group 3, biologics were used significantly more often over time than in group 1 (54.0% vs. 18.3%, p=0.014), and Group 2 patients received bDMARDs in 36.1%.Conclusion:While patients with numerous early joint injections seem to achieve inactive disease more frequently and earlier, they have a slightly smaller body height and tend to develop uveitis slightly more often than patients with more intensive DMARD therapy. However, the differences are small between the groups. Further comparative effectiveness studies with higher patient numbers are needed to identify particularly effective and safe treatment strategies.References:[1]Horneff et al. Pediatric Rheumatology 2017;15:78.[2]Wallace et al. Arthritis Care Res (Hoboken) 2011;63:929-36.Acknowledgements:The ICON study is funded by a research grant of the Federal ministry of education and research (BMBF, FKZ 01ER0812, FKZ 01ER1504A-C).Disclosure of Interests:Kirsten Minden Speakers bureau: Pfizer, Abbvie, Consultant of: Novartis, Tobias Schwarz: None declared, Frank Dressler: None declared, Ivan Foeldvari Consultant of: Gilead, Novartis, Pfizer, Hexal, BMS, Sanofi, MEDAC, Johannes-Peter Haas: None declared, Gerd Horneff Speakers bureau: Pfizer, Consultant of: Novartis, Toni Hospach Consultant of: Novartis, Jasmin Kümmerle-Deschner: None declared, Kirsten Moenkemoeller: None declared, Frank Weller-Heinemann Speakers bureau: Pfizer, AbbVie, SOBI, Roche, Novartis, Klaus Tenbrock: None declared, Martina Niewerth: None declared, Claudia Sengler: None declared, Dirk Foell: None declared, Jens Klotsche: None declared

Health-related quality of life in Iranian adolescents: a psychometric evaluation of the self-report form of the PedsQL 4.0 and an investigation of gender and age differences

Background Research on the psychometric properties of the Persian self-report form of the Pediatric Quality of Life Inventory Version 4.0 (PedsQL 4.0) in adolescents has several gaps (e.g., convergent validity) that limit its clinical application and therefore the cross-cultural impact of this measure. This study aimed at investigating the psychometric properties of the PedsQL 4.0 and the effects of gender and age on quality of life in Iranian adolescents. Method The PedsQL 4.0 was administered to 326 adolescents (12–17 years). A subsample of 115 adolescents completed the scale two weeks after the first assessment. Confirmatory Factor Analysis (CFA), correlation of the PedsQL 4.0 with the Weiss Functional Impairment Rating Scale-Self-report (WFIRS-S), and Item Response Theory (IRT) analysis were conducted to examine validity. Cronbach’s alpha, McDonald’s Omega, and Intra class correlation (ICC) were calculated as well to examine reliability. Gender and age effects were also evaluated. Results Internal consistency and test–retest reliability of the total PedsQL 4.0 scale was .92 and .87, respectively. The PedsQL 4.0 scores showed negative moderate to strong correlations with the WFIRS-S total scale. The four-factor model of the PedsQL 4.0 was not fully supported by the CFA—the root mean square error of approximation and the comparative fit index showed a mediocre and poor fit, respectively. IRT analysis indicated that all items of the PedsQL 4.0 fit with the scale and most of them showed good discrimination. The items and total scale provided more information in the lower levels of the latent trait. Males showed significantly higher scores than females in physical and emotional functioning, psychosocial health, and total scale. Adolescents with lower ages showed better quality of life than those with higher ages in all scores of the PedsQL 4.0. Conclusion The PedsQL 4.0 showed good psychometric properties with regard to internal consistency, test–retest reliability, and convergent validity in Iranian adolescents, which supports its use in clinical settings among Persian-speaking adolescents. However, factor structure according to our CFA indicates that future work should address how to improve fit. In addition, studies that include PedsQL 4.0 should consider gender and age effects were reported.

СОВРЕМЕННЫЕ ПОДХОДЫ К ОЦЕНКЕ КАЧЕСТВА ЖИЗНИ ДЕТЕЙ С АРТЕРИАЛЬНОЙ ГИПЕРТЕНЗИЕЙ

В данной статье представлены данные отечественной и зарубежной литературы об оценке качества жизни детей с общей и кардиальной патологией. Для оценки КЖ детей с общей и кардиальной патологией возможно использовать опросники PedsQL-4.0, CHQ, KYNDL, САН и EuroQol, являющиеся общими. Существует потребность в разработке специальных опросников для оценки КЖ детей и подростков с артериальной гипертензией.

IMPACT OF REHABILITATION TECHNOLOGIES USING VIRTUAL REALITY UPON QUALITY OF LIFE IN CHILDREN WITH CEREBRAL PALSY

Background. Cerebral palsy (CP) is one of the leading diseases causing disability in childhood. It is necessary to improve existing medical technologies and introduce new modern ways of treating children with CP which can improve their life quality. Objective of the study. To explore the impact of virtual reality (VR) technologies within the frames of complex medical rehabilitation upon life quality of patients with CP. Material and methods. The study was observational, retrospective-prospective, cohort, and comparative in nature. It included 58 pediatric patients with levels II-III spastic forms of CP according to MACS. Rehabilitation in combination with virtual reality technologies was carried out for 30 patients, 28 patients received medical rehabilitation without using VR. Life quality (PedsQL-4.0) was evaluated 2 months after the rehabilitation course. Results. Medical rehabilitation with the methods of everyday use of virtual reality technologies directed at improving manipulative hand function in children with cerebral palsy significantly increases life quality (PedsQL-4.0) for blocks of physical function and physical activity (pKruscal–Wallis<0.001), emotional function (pKruscal–Wallis<0.001), social function (pKruscal–Wallis<0.001) as well as role functioning in learning (pKruscal–Wallis<0.001) in comparison to children who received rehabilitation without using these technologies which can be the reason for including virtual reality methods into the process of rehabilitation treatment of patients with CP.

The quality of life in Chinese juvenile idiopathic arthritis patients: psychometric properties of the pediatric quality of life inventor generic core scales and rheumatology module

Background Juvenile idiopathic arthritis (JIA) may seriously affects patients’ quality of life (QoL), but it was rarely focused and studied in China, so we explore JIA children’s QoL using Chinese version of the PedsQL4.0 Generic Core and PedsQL3.0 Rheumatology Module scale, and analyzed the psychometric properties of these two Scales among Chinese JIA children. Methods We recruited 180 JIA patients from Children's Hospital Affiliated to Capital Institute of Pediatrics and Hebei Yanda Hospital from July 2018 to August 2019. The questionnaires include information related on JIA, PedsQL4.0 generic core and PedsQL3.0 Rheumatology Module scales. According to the disease type, onset age of and course of JIA, we divided them into different groups, then compared the QoL status among different groups. Moreover, we analyzed the reliability and validity of these two scales in these 180 JIA children. Results The mean score of PedsQL4.0 generic core scale on these 180 patients was 82.85 ± 14.82, for these in active period was 72.05 ± 15.29, in remission period was 89.77 ± 9.23; the QoL score of systemic, polyarticular and oligoarticular JIA patients were 77.05 ± 19.11, 84.33 ± 12.46 and 87.12 ± 10.23. The mean score of PedsQL3.0 Rheumatology Module scale on 180 patients was 91.22 ± 9.45, for these in active period was 84.70 ± 11.37, in remission period was 95.43 ± 4.48; the QoL score of systemic, polyarticular and oligoarticular JIA patients were 89.41 ± 11.54, 89.38 ± 10.08 and 93.71 ± 6.92. In the PedsQL 4.0 Generic Core scale, the α coefficients of total scale and almost every dimension are all greater than 0.8 except for the school activity dimension of 0.589; the correlation coefficients of 22 items’ scores (total 23 items) with the scores of dimensions they belong to are greater than 0.5 (maximum value is 0.864), and the other one is 0.406. In PedsQL3.0 Rheumatology Module scale, except for the treatment and worry dimensions of 0.652 and 0.635, the α coefficients of other dimensions and the total scale are all greater than 0.7; the correlation coefficients of all items’ score were greater than 0.5 (the maximum is 0.933, the minimum is 0.515). Conclusions The QoL of Chinese JIA children is worse than their healthy peers, these in active period and diagnosed as systemic type were undergoing worst quality of life. The reliability and validity of PedsQL 4.0 Generic Core and PedsQL3.0 Rheumatology Module scale in Chinese JIA children are satisfactory, and can be used in clinical and scientific researches.

Feasibility and Concurrent Validity of Cerebral Palsy Quality of Life for Children (CP QOL-Child) in Thai Version

Background: The Cerebral Palsy Quality of Life for Children (CP QOL-Child) questionnaires are condition-specific QOL measures for children with CP focusing on perspectives of children with CP on their quality of life, not on their physical difficulties. The perspectives of well-being are core concepts of quality of life. The CP QOL-Child has already been translated in Thai and the reliability is excellent. The validity after the translation has not been conducted and is required. therefore, it is needed to examine the validity to ensure the clinical practicality. Objective: To examine feasibility and concurrent validity of the CP QOL-Child (Thai version). Materials and Methods: Eighty-five primary caregivers of 4- to 12-year-old children and 65 children between 9- and 12-years-old, who passed the inclusion criteria, completed three questionnaires including the CP QOL-Child (Thai version), the PedsQL 4.0 Generic Core Scales, and the PedsQL 3.0 CP module (Thai version). Results: For feasibility of the CP QOL-Child, no missing items were found in any items for the child self-report. For parent proxy report, missing items were scattered and from 1.2% to 7.1%. For concurrent validity, according to the total scores of both versions, the self-report and the parent proxy, the correlation coefficients between CP QOL-Child and PedsQL 4.0 Generic Core Scales were 0.23 to 0.25 meaning no or little correlations, at significance level of 0.05. The correlation coefficients between the CP QOL-Child and the PedsQL CP module were 0.38 to 0.49, meaning fair correlations, at significance level of 0.01. Conclusion: The feasibility of the CP QOL-Child (Thai version) was reportedly acceptable. The concurrent validity support that the CP QOL-Child may not measure the quality of life at the same constructs as the PedsQL. The CP QOL-Child asks the client’s perspectives of quality of life (QOL) while both PedsQL modules ask the client’s difficulties that might relate to QOL. Keywords: Health-related quality of life, CP QOL-Child, Cerebral palsy, Feasibility, Validity