Validation of the extended ICF core set for stroke from the patient perspective using focus groups

Abstract

Purpose: The extended international classification of functioning, disability and health (ICF) core set for stroke is an application of the ICF of the World Health Organisation (WHO) with the purpose to represent the typical spectrum of functioning of persons with stroke. The objective of the study was to add evidence to the validation of the extended ICF core set for stroke from the perspective of patients using focus groups to explore the aspects of functioning and health important to persons with stroke. Method: The sampling of patients followed the maximum variation strategy. Sample size was determined by saturation. The focus groups were digitally recorded and transcribed verbatim. After qualitative data analysis, the resulting concepts were linked to ICF categories and compared to the categories included in the extended ICF core set for stroke. Results: Sixty patients participated in 15 focus groups. The content of 131 out of 166 ICF categories contained in the extended ICF core set for stroke was reported by the persons with stroke. The content of 31 additional categories that are not covered in the extended ICF core set for stroke was raised. Conclusions: The existing version of the extended ICF core set for stroke could be confirmed almost entirely from patient perspective.

Implications for Rehabilitation:

• The extended ICF Core Set for stroke can be used to create a functioning profile for persons after stroke to identify problems and resources considering a client-centred approach.

• This study shows which aspects of the environment of persons after stroke are relevant from the clients’ perspective and should be integrated in the rehabilitation process.

• This study provides a basis for the further development of the ICF, especially with regard to its update in relevant aspects from clients’ perspective after stroke.

Keywords::

• ICF core set
• ICF
• patient perspective
• stroke

Acknowledgments

We want to thank all participants for their support and contribution to this study. Without their volunteer participation and their openness to discuss their private and personal experiences and opinions it would not have been possible to achieve these results. Our special thanks go to Andrea Barrera and Carla Sabariego for the recruitment of participants and data collection. We would like to thank Miriam Lückenkemper for proof reading the manuscript, Elke Ruschek and Katharina Strasky for transcription of the recordings of the focus groups and Cristina Bostan, who is supported by a Marie Curie Fellowship from the EU funded project MURINET. The responsibility for the content of this publication lies within the ICF Research Branch.

Declaration of interest: The authors report no conflicts of interest. This study forms part of the doctoral thesis of the first author at the Faculty of Medicine, Ludwig-Maximilians-Universität, Munich, Germany.