An international core outcome set for primary progressive Aphasia (COS-PPA): commonalities in what people want to change about their lives with PPA across seventeen countries

Introduction: 

Person-centred care has been recommended as best practice speech and language therapy for people with primary progressive aphasia. However there has been little research exploring what people with primary progressive aphasia and their family care partners want to change about living with the disease. The research undertaken to date has been skewed toward English-speaking, Western countries, meaning there is little understanding about cross-cultural needs. 

Methods: 

Speech and language therapy/pathology collaborators across 17 countries recruited participants with primary progressive aphasia and their family care partners to participate in separate consensus groups. The Nominal Group Technique was used to ask participants what they would like to change about the way primary progressive aphasia affects communication and their lives. Two researchers coded the top three constructs identified by each group of participants in each country using the six Hofstede cultural dimensions; Power Distance, Uncertainty Avoidance, Individualism/Collectivism, Motivation Towards Achievement/Success and Long-Term Orientation. 

Results: 

89 people with PPA and 101 family care partners across 17 countries identified 102 constructs. All constructs were coded as aligned with one of the six Hofstede cultural dimensions. Of these, 36 aligned with the dimension of uncertainty avoidance, whilst 26 aligned with the dimension of a collectivistic culture. 

Discussion: 

Across countries, people with PPA and their family care partners identified a desire for more certainty around their future lives as well as wanting more collaboration from within their social networks and communities to help them manage how PPA affects their lives. This demonstrates an urgent need to improve our understanding of the progression of primary progressive aphasia and educate the public.