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Related Concept Videos

Regression Toward the Mean01:52

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Regression toward the mean (“RTM”) is a phenomenon in which extremely high or low values—for example, and individual’s blood pressure at a particular moment—appear closer to a group’s average upon remeasuring. Although this statistical peculiarity is the result of random error and chance, it has been problematic across various medical, scientific, financial and psychological applications. In particular, RTM, if not taken into account, can interfere when...
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Related Experiment Video

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Use of a Video Scoring Anchor for Rapid Serial Assessment of Social Communication in Toddlers
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Outcome measurement instruments in Rett syndrome: A systematic review.

R P Romero-Galisteo1, M González-Sánchez1, L Costa2

  • 1Department of Physiotherapy, Faculty of Health Science, University of Málaga, Biomedical Research Institute of Málaga (IBIMA), Málaga, Spain.

European Journal of Paediatric Neurology : EJPN : Official Journal of the European Paediatric Neurology Society
|June 19, 2022
PubMed
Summary

This study identified 17 outcome measures for Rett syndrome (RS), including questionnaires and functional assessments. Further research is needed to establish consensus on the best tools for evaluating RS.

Keywords:
COSMINOutcome measuresPsychometric propertiesRett syndromeSystematic review

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Area of Science:

  • Neurology
  • Clinical Assessment
  • Rehabilitation

Background:

  • Rett syndrome (RS) requires standardized outcome measures for effective assessment.
  • Objective and subjective measures are crucial for understanding disease progression and treatment efficacy in RS.

Purpose of the Study:

  • To identify and characterize outcome measures for objective and subjective assessment in individuals with Rett syndrome.
  • To evaluate the measurement properties of identified patient-reported outcome measures (PROMs).
  • To categorize outcome measures based on the International Classification of Functioning, Disability and Health (ICF).

Main Methods:

  • A systematic review of multiple databases (EBSCO, Cochrane, Web of Science, etc.) was conducted.
  • Included validation and observational studies describing outcome measures in Rett syndrome.
  • PROMs were described and their measurement properties evaluated using COSMIN criteria; outcome measures were mapped to ICF domains.

Main Results:

  • Seventeen distinct outcome measures were identified from 20 selected articles.
  • Ten measures were evaluation questionnaires, and seven assessed functional outcomes (e.g., walking, visual interaction).
  • Most identified measures (15) assess activity limitations within the ICF framework.

Conclusions:

  • The identified outcome measures show promise for clinicians and researchers studying Rett syndrome.
  • Methodological limitations exist, necessitating continued assessment of measure accuracy and quality.
  • Gathering consensus on the optimal outcome measures for RS is recommended.