Cope PPA - Adaptation of the Biographic-Narrative Approach for Persons with Primary Progressive Aphasia: Protocol for Clinical Trial Design

Abstract Background: Persons with Primary Progressive Aphasia (PPA) face numerous challenges due to their speech impairment. Approximately 40% of these patients develop depression during the course of the disease. Speech and language therapy is perceived as valuable by persons with PPA and has a positive impact on their quality of life. Nevertheless, there is still a lack of evidence on disorder-specific approaches aiming at this important therapeutic goal. The biographic-narrative approach (narraktiv) has been shown to significantly improve quality of life and mood in a sample of 27 persons with post-stroke aphasia. In the planned study, the biographic-narrative approach will be adapted for persons with PPA (Cope PPA) and its effectiveness will be investigated. Methods: First, a focus group interview will be conducted to determine which adaptation of narraktiv persons with PPA require. For this purpose five patients with PPA from the outpatient memory clinic will be recruited. Semistructured interview guidelines will be used, and the analysis will be carried out using qualitative content analysis. Based on the results of the focus group interviews, the narraktiv manual according to Corsten et al. (2015) will be revised resulting in the Cope PPA manual. Subsequently, an efficacy study will be conducted according to the Cope PPA manual, aiming for a total of 24 participants. Each participant will attend five individual and seven group therapy sessions over a period of ten weeks. The individual therapy sessions will be based on the methodology of narrative and episodic interviews. The group therapy sessions will follow a fixed structure addressing topics such as hobbies, friends and family, health and illness. The primary outcome of the efficacy study will be quality of life (Stroke and Aphasia Quality of Life Scale-39), secondary outcomes will be depressive symptoms (Montgomery-Åsberg Depression Rating Scale) and satisfaction with life (Satisfaction With Life Scale). Semistructured interviews will be used to measure effects qualitatively. Furthermore, cognitive and communicative abilities (Mini-Mental-Status-Examination, Scenario Test) will be assessed during the efficacy study. Discussion: This is the first study to investigate the effects of the biographic-narrative approach on the quality of life of persons with PPA. If the innovative approach proves successful, it will improve the treatment of persons with PPA. Protocol version: 18 January 2024 (Version 2) Trial registration: Prospectively registered 26/01/2024 - Deutsches Register Klinischer Studien (DRKS00031782); Studiendatenbank der Universitätsmedizin Mainz (FoR.UM Nummer 23-00696)