Development and preliminary validation of a patient-reported outcome measure for conversation partner schemes: the Conversation and Communication Questionnaire for People with Aphasia (CCQA)

ABSTRACT

Background

Conversation Partner schemes are increasingly used as a way of addressing the psychosocial and emotional consequences of aphasia, providing opportunities for people with aphasia to engage in authentic conversation and to develop social relationships. As yet, there are no outcome measures, that are theorised to match what is expected to change and how such changes are best identified, and that specifically address the constructs of Conversation Partner schemes.

Aims

This study aimed to develop a new, theoretically motivated and accessible patient-reported outcome measure for evaluating the experiences of people with aphasia involved in Conversation Partner schemes, and for assessing the impact of schemes on areas of importance to people with aphasia.

Methods & procedures

A mixed-methods study was undertaken in two phases. Phase 1 (item generation) used semi-structured one-to-one interviews and focus groups, which were subject to thematic analysis; Nominal Group Technique was used to develop and refine the item pool. In Phase 2 cognitive interviews were used to examine content validity; structural validity was examined using statistical methods (exploratory factor analysis; Rasch model analysis).

Outcomes & results

Six themes from interviews and focus groups were developed into 41 candidate items through Nominal Group Technique. Item reduction through cognitive interviewing produced a 30-item scale, which was piloted and then field-tested by 123 community-dwelling adults with aphasia; 121 responses were subject to exploratory factor analysis and further item reduction, producing a four factor, 14-item scale. Rasch analysis demonstrated overall fit to the Rasch model and excellent targeting of items to person. Creation of 3 testlets by grouping items together accommodated the dependence found between pairs of items.

Conclusions

The Conversation and Communication Questionnaire for people with Aphasia V3 is a 14-item, patient-reported measure for use with patients with aphasia taking part in Conversation Partner schemes. It is concise, has strong content validity, and has some supporting evidence of construct validity. Further research is needed to test its reliability and responsiveness.

KEYWORDS:

• Aphasia
• identity
• conversation
• patient-reported outcomes
• conversation partner scheme

Acknowledgments

First and foremost, great thanks are due to the Norfolk Conversation Partners for their enthusiastic participation, and to all people with aphasia, who took part in the study. Many thanks go to Grace Anstey, Amy Decaro, Sarah Hall, Amy Lamond, Jo Mitchell, Sarah Moran, Cat Nicholas, Lisa Roach, Lindsay Smith & Ruth Spilman, Speech and Language Therapy dissertation students at the University of East Anglia for all their work in the study. Many thanks to Professor Marian Brady for all her support in connecting us with numerous community aphasia groups, and to the leaders of those groups for helping to facilitate the participation of their members. Many thanks to Dr Louise Swift for her expertise in providing statistical analysis. Many thanks to Elena Horton for inputting data from completed questionnaires. We also acknowledge the generous support of the Tavistock Trust for Aphasia, who provided funding for parts of the study.

Disclosure statement

No potential conflict of interest was reported by the authors.

Supplementary material

The supplemental data for this article can be accessed here.

Additional information

Funding

This work was supported in part by a grant from the Tavistock Trust for Aphasia.