We conducted a systematic review and meta-analysis to determine the effect of changes to the Diagnostic and Statistical Manual (DSM)-5 on autism spectrum disorder (ASD) and explore policy implications. We identified 418 studies; 14 met inclusion criteria. Studies consistently reported decreases in ASD diagnosis (range 7.3-68.4%) using DSM-5 criteria. There were statistically significant pooled decreases in ASD [31% (20-44), p = 0.006] and DSM-IV-TR subgroups of Autistic disorder [22% (16-29), p < 0.001] and pervasive developmental disorder-not otherwise specified (PDD-NOS) [70% (55-82), p = 0.01]; however, Asperger's disorder pooled decrease was not significant [70% (26-94), p = 0.38]. DSM-5 will likely decrease the number of individuals diagnosed with ASD, particularly the PDD-NOS subgroup. Research is needed on policies regarding services for individuals lacking diagnosis but requiring assistance.
Despite increasing regulatory scrutiny, deficiencies still exist in participant comprehension of the research in which they participate, as well as differences in how comprehension is measured and assessed. No single intervention was identified as consistently successful for improving participant comprehension, and results indicated that any successful consent process should at a minimum include various communication modes and is likely to require one-to-one interaction with someone knowledgeable about the study.
Parents/guardians of children with cancer have limited knowledge about WGS. A two-step consent process may improve their ability to provide meaningful informed consent.
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