Primary Progressive Aphasia: a Core Outcome Set for improving intervention research

There is currently no curative treatment for Primary Progressive Aphasia (PPA), a language led dementia that progresses inexorably over time. Symptomatic pharmacological therapies have also not shown any evidence of effectiveness. Speech and language therapists and neuroscientists across the world have, however, worked for many years on tailored programmes for such people with PPA, and multiple interventions have emerged. Yet, research examining the effectiveness of these lack rigour, with small sample sizes and a lack of consistency in outcome measures posing limitations to the generalisability of the work. In this international cross-disciplinary collaboration we propose the development of a core set of outcome measures for researchers in the field of PPA interventions. This is extremely important in allowing this field of intervention research to develop, improving the rigour and impact of the work being undertaken. This will provide benefits for individuals with PPA worldwide, increasing access to interventions that can maintain communication, relationships and independence.

Contributors

PI: Dr Anna Volkmer
Co-investigator: Dr Chris Hardy
Collaborators: Dr Sarah Wallace, Prof David Copeland

Further Study Information

Current Stage: Ongoing
Date: March 2021
Funding source(s): UCL Grand Challenge


Health Area

Disease Category: Neurology, Rehabilitation

Disease Name: Primary Progressive Aphasia (PPA)

Target Population

Age Range: 18 - 120

Sex: Either

Nature of Intervention: Rehabilitation

Stakeholders Involved

- Clinical experts
- Consumers (caregivers)
- Consumers (patients)
- Families
- Researchers

Study Type

- COS for clinical trials or clinical research

Method(s)

- Consensus conference
- Consensus meeting
- Focus group(s)
- Interview
- Nominal group technique (NGT)
- Semi structured discussion
- Systematic review

In this international cross-disciplinary collaboration we propose the development of a core set of outcome measures for researchers in the field of PPA interventions. We propose this comprise a series of stages including:

Stage 1: Systematic review of outcome measures currently described in the intervention research literature for people with PPA.
Stage 2: Identification of the most important outcomes through international consultation with key stakeholders including people with PPA and their families, clinical speech and language therapists, neurologist and neuro-psychologists amongst other health professional groups. To be conducted remotely.
Stage 3: Consensus work with an international group of researchers in the field, to identify the key constructs and core outcomes for each of these. To be conducted remotely at forthcoming working party meetings.

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