Disagreement about perceptions of patient disability between the stroke patient and caregiver: a cross sectional study exploring the association to patient and caregiver quality of life

Abstract

Objectives

This study explored the association of disagreement in the perception of patient disability between patients and family caregivers with physical and psychological quality of life (QOL) in both parties.

Methods

A cross-sectional analysis of data collected from male stroke patients and family caregivers was conducted. Physical and psychological QOL in patients and caregivers were measured using the WHOQOL BREF. Perceptions of patient disability were measured using the 12-item WHO Disability Assessment Schedule 2.0 (DAS). Using DAS scores reported independently by patients and caregivers, dyads were categorized into one of four groups representing agreement or disagreement about patient disability. Generalized estimating equations were used to examine the associations between WHOQOL scores in patients and caregivers and these four groups.

Results

Among 56 dyads enrolled, approximately 52% were categorized into ‘agreement’ groups and 48% were categorized into ‘disagreement’ groups. The disagreement in perception about patient disability were significantly associated with poor patient physical QOL. However, the disagreement in perception were not significantly associated with caregiver QOL.

Conclusion

Findings suggest the association of disagreement with QOL differs between patients and caregivers. Further research is needed to carefully appraise the relationship and interaction between patient and caregiver.

Keywords:

• Cross-sectional study
• quality of life
• stroke
• patient–caregiver relationship
• disagreement

Acknowledgements

The authors would like to thank all patients and therapists who participated in this study. We are very grateful to key collaborators who contributed to obtain permission from the facilities and assisted first author’s work related to data collection in the facility: Kanako Mizushima, OTR; Akira Maeda, RPT; Yutaka Matsui, RPT; Takahisa Uchida, OTR; Shinya Hayashi, OTR; Hiroshi Wakayama, RPT; Hideya Nagashima, RPT: Junichi Yamazaki, OTR; Yu Fudano, OTR; Tomokazu Mizuno, OTR; Keita Suzuki, OTR; Youhei Morishita, OTR; Toshizumi Sakurai, OTR. Additionally, we would like to thank Hideo Kobayashi, MD, PhD, Kounosuke Tomori, OTR, PhD, Kakuya Ogahara OTR, MHSc, and Machiko Oda, RPT for their special contribution to recruiting facilities.

Disclosure statement

No potential conflict of interest was reported by the authors.

Author’s contributions

NT is the principal author of this manuscript in all phases from the conception to the submission, data collection, data analysis, and manuscript writing. NT, MOK, MK, and TN conceived and designed the study. NT conducted data analysis with support from MK, MJM, and TN. All authors participated in interpretation of the data. All authors revised and approved the final manuscript.

Ethics approval

This study was performed in line with the principles of the Declaration of Helsinki. Approval was granted by Ethics Committee of Kyoto University Graduate School and Faculty of Medicine (R1694-3).

Consent to participate

All participants provided written informed consent before participation to the study.

Additional information

Funding

The study was supported by research funding of the Department of Health Informatics, School of Public Health, Graduate School of Medicine, Kyoto University (grant number: N/A).