[What are important goals in the treatment of people with primary progressive aphasia?]

Primary progressive aphasia (PPA) is a neurodegenerative disease that leads to progressive impairment of language and communication, with serious consequences for the daily lives of affected patients.

As part of an international research collaboration (https://www.comet-initiative.org/Studies/Details/1871), important endpoints for investigating the success of (speech and language) therapy for people with PPA were developed (Core Outcome Set for PPA, COS-PPA). Here we report the results from Germany, discuss them in the context of the overall project, and compare them with the core outcomes for post-stroke aphasia.

Six small group interviews were conducted with n=9 patients with PPA and n=13 caregivers using the nominal group technique to ask about wishes and goals regarding communication and speech-language therapy as well as their importance.

PPA patients emphasised linguistic goals, while care partners focused on communication relevant to everyday life and psychological aspects. The international COS-PPA results were largely consistent with the findings in Germany and also showed a focus on language and communication. A comparison of the German survey results with the COS for aphasia after stroke revealed particular overlap regarding the improvement of language, communication, and quality of life.

Taking into consideration the wishes and treatment goals in PPA can contribute to the planning of therapy and to the standardization of research methods in clinical trials. However, the individual character of the treatment should be preserved.