METHODS: Self-administered questionnaires were completed by 48 parents of children with ASD at a single tertiary referral hospital in Malaysia. Correlation analysis was used to explore associations between parental satisfaction scores, perception of progress scores and use of CHA.
RESULTS: Use of CHA was reported by parents for 35.4% of children with ASD in the sample. Parents who were less satisfied with conventional treatment and parents who perceived poorer progress in their child's development were more likely to use CHA. Strong positive relationship was found between parent satisfaction with ASD treatment scores and parent perception of progress scores, which indicates that parents who were satisfied with treatment were more likely to perceive greater progress in their child's development. Improvement in child's progress was most appreciated by parents in their child's behavior (85.5%), social skills (83.3%) and motor skills (77.1%).
CONCLUSION: The use of CHA was common among children with ASD. Parents were more likely to practice CHA when they were less satisfied with conventional treatment and perceived poorer progress. A larger multicenter study is required to further explore the practice of CHA among children with ASD throughout Malaysia.
DESIGN AND METHODS: One hundred fifty-five adult ASD caregivers completed the Malay version of Brief COPE, the Patient Health Questionnaire-9, and the Balanced Index of PM.
FINDINGS: Direct paths between dysfunctional coping style and depressive symptoms, between insight and depressive symptoms, and between dysfunctional coping style and all PM variables (insight and interest) were obtained. Multiple regression analyses revealed that insight, but not interest, significantly mediates the relationship between dysfunctional coping and depressive symptoms.
PRACTICAL IMPLICATIONS: PM can be enhanced via psychological interventions.
METHODS: A cross-sectional study was conducted among 110 caregivers of children with ASD aged between 2 and 17 years old that received treatment at two tertiary care centres in Kelantan. Permission to use the original version of the PSS questionnaire was obtained. The original English version of the PSS was translated into a Malay version following the 10 steps proposed by an established guideline. Pre-testing of the PSS was carried out with 30 caregivers before confirmatory factor analysis (CFA) was established using 110 caregivers. They were asked to assess their understanding of the questionnaire. The one-dimensional questionnaire consists of 11 items, including staff attitudes, availability of staff, supportiveness, and helpfulness. The 5-point Likert scale provided ratings from 1 (strongly disagree) to 5 (strongly agree). Confirmatory factor analysis was performed using a robust maximum likelihood estimator.
RESULTS: The analysis showed model fit data with good reliability.
CONCLUSION: The PSS-M shows overall model fitness based on specific indices, with good construct validity and excellent absolute reliability to determine the satisfaction level of caregivers of children with ASD with respect to health care services.
METHODS: This cross-sectional study aimed to determine the factors associated with caregivers' satisfaction with different levels of health care services in managing children with ASD in Kelantan. The satisfaction scores of 227 main caregivers of confirmed ASD children were assessed with a modified Parent Satisfaction Scale (PSS) questionnaire.
RESULTS: The analysis showed that caregivers who waited longer for a doctor's consultation in primary care had a reduced PSS score, whereas caregivers who were satisfied with the waiting time in primary care had higher PSS scores. At the secondary care level, caregivers who possessed at least a diploma had reduced PSS scores, whereas caregivers who were satisfied with both doctors' consultation times and occupational therapy appointments had higher PSS scores. At the tertiary care level, caregivers with an underlying medical problem and who had children undergoing occupational therapy for two months or more had reduced PSS scores. Nevertheless, the analysis showed that caregivers who were concerned with their children's sleeping problems, who had been informed about parental support, who were satisfied with speech and occupational therapy appointments, who were satisfied with waiting times at tertiary care clinics, and who were satisfied with their doctor's knowledge and experience had higher PSS scores.
CONCLUSIONS: This study elucidated the importance of understanding caregivers' satisfaction in attaining care for their ASD children and highlighted the need to promote factors that would increase caregivers' satisfaction with current ASD services.
METHODS: We therefore conducted a cluster analysis of the Autism Diagnostic Interview-Revised (ADI-R) scores from 85 individuals with ASD to predict subgroups and subsequently identified dysregulated genes by reanalyzing the transcriptome profiles of individuals with ASD and unaffected individuals. Proteome profiling of lymphoblastoid cell lines from these individuals was performed via 2D-gel electrophoresis, and then mass spectrometry. Disrupted proteins were identified and compared to the dysregulated transcripts and reported dysregulated proteins from previous proteome studies. Biological functions were predicted using the Ingenuity Pathway Analysis (IPA) program. Selected proteins were also analyzed by Western blotting.
RESULTS: The cluster analysis of ADI-R data revealed four ASD subgroups, including ASD with severe language impairment, and transcriptome profiling identified dysregulated genes in each subgroup. Screening via proteome analysis revealed 82 altered proteins in the ASD subgroup with severe language impairment. Eighteen of these proteins were further identified by nano-LC-MS/MS. Among these proteins, fourteen were predicted by IPA to be associated with neurological functions and inflammation. Among these proteins, diazepam-binding inhibitor (DBI) protein was confirmed by Western blot analysis to be expressed at significantly decreased levels in the ASD subgroup with severe language impairment, and the DBI expression levels were correlated with the scores of several ADI-R items.
CONCLUSIONS: By subgrouping individuals with ASD based on clinical phenotypes, and then performing an integrated transcriptome-proteome analysis, we identified DBI as a novel candidate protein for ASD with severe language impairment. The mechanisms of this protein and its potential use as an ASD biomarker warrant further study.
METHODS/DESIGN: This study is a two-arm parallel group randomized controlled trial (RCT) in which adolescents are randomly assigned (after baseline assessment) to one of two group interventions (PEERS® vs. active control condition). In total, 150 adolescents are to be included, with multi-informant involvement of their parents and teachers. The ACCEPT study uses an active control condition (puberty psychoeducation group training, focussing on social-emotional development) and explores possible moderators and mediators in improving social skills. The primary outcome measure is the Contextual Assessment of Social Skills (CASS). The CASS assesses social skills performance in a face to face social interaction with an unfamiliar, typically developing peer, making this a valuable instrument to assess the social conversational skills targeted in PEERS®. In addition, to obtain a complete picture of social skills, self-, parent- and teacher-reported social skills are assessed using the Social Skills improvement System (SSiS-RS) and Social Responsiveness Scale (SRS-2). Secondary outcome measures (i.e. explorative mediators) include social knowledge, social cognition, social anxiety, social contacts and feelings of parenting competency of caregivers. Moreover, demographic and diagnostic measures are assessed as potential moderators of treatment effectiveness. Assessments of adolescents, parents, and teachers take place at baseline (week 0), intermediate (week 7), post intervention (week 14), and at follow-up (week 28).
CONCLUSION: This is the first RCT on the effectiveness of the PEERS® parent-assisted curriculum which includes an active control condition. The outcome of social skills is assessed using observational assessments and multi-informant questionnaires. Additionally, factors related to social learning are assessed at several time points, which will enable us to explore potential mediators and moderators of treatment effect.
TRAIL REGISTRATION: Dutch trail register NTR6255 (NL6117). Registered February 8th, 2017 - retrospectively registered.