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COS-PPA: protocol to develop a core outcome set for primary progressive aphasia.

Anna Volkmer1, David A Copland2,3, Maya L Henry4

  • 1Department of Psychology and Language Sciences, University College London, London, UK a.volkmer.15@ucl.ac.uk.

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|May 8, 2024
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Summary

Primary progressive aphasia (PPA) lacks a standardized outcome set for intervention studies. This study will develop a core outcome set (COS) for PPA to improve research and clinical practice comparability.

Keywords:
dementiapatient reported outcome measuresspeech pathology

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Area of Science:

  • Neurology
  • Speech and Language Therapy
  • Dementia Research

Background:

  • Primary progressive aphasia (PPA) is a group of language-led dementias with no disease-modifying treatments.
  • Current interventions for PPA focus on symptom management, but lack standardized outcome measures for effectiveness studies.
  • Existing core outcome sets for dementia and non-progressive aphasia do not adequately address the specific needs of PPA patients.

Purpose of the Study:

  • To develop a specific Core Outcome Set (COS) for primary progressive aphasia (PPA) interventions.
  • To enhance the comparability and rigor of research and clinical practice for PPA.
  • To ensure that patient and family priorities are central to outcome measurement in PPA research.

Main Methods:

  • A three-stage study protocol is described, including a systematic review, nominal group technique, and modified Delphi consensus study.
  • Stage 1: Systematic review of speech, language, and communication measures used in PPA intervention research.
  • Stage 2: Nominal group technique with PPA patients and families to identify key outcomes, followed by a modified Delphi consensus study with researchers.

Main Results:

  • The study protocol outlines a comprehensive approach to developing a PPA-specific COS.
  • The findings will identify crucial outcome measures for PPA interventions, addressing current research gaps.
  • The developed COS will facilitate standardized assessment and improve the evaluation of PPA treatments.

Conclusions:

  • A PPA-specific Core Outcome Set is critically needed to advance intervention research and clinical care.
  • This study's methodology will yield a robust and patient-centered COS for PPA.
  • The resulting COS will improve the quality and comparability of evidence for PPA interventions.