Validation of the Episodic Disability Framework with adults living with HIV

Abstract

Purpose: To assess the validity of dimensions of disability in the Episodic Disability Framework, a conceptual framework derived from the perspective of adults living with HIV. Methods: We conducted confirmatory factor analyses with 913 adults living with HIV in an observational cohort study called the Ontario HIV Treatment Network Cohort Study (OCS). We tested hypotheses that dimensions of disability in the Episodic Disability Framework were represented by a group of measured variables in the observational database. Results: A model comprised of four latent variables and 43 indicator variables with one cross-loading was superior to models with fewer latent variables and more indicator variables and supported the validity of disability dimensions: physical health symptoms (represented by 21 indicator variables), mental health symptoms (10 variables), difficulties with day-to-day activities (5 variables) and challenges to social inclusion (8 variables). Overall goodness of fit statistics were χ²= 2621.50 (p < 0.001), Comparative Fit Index = 0.912, Tucker Lewis Index = 0.907 and root mean square error of approximation = 0.048. Dimensions of disability correlated with each other ranging from r = 0.44 (between physical symptoms and challenges to social inclusion) to r = 0.81 (between physical symptoms and difficulties with day-to-day activities). Conclusions: This study supports the validity of four disability dimensions in the Episodic Disability Framework. This framework provides a new way to conceptualize disability and can lay the foundation for developing a future HIV disability measure for clinical and health services research.

Implications for Rehabilitation

• The Episodic Disability Framework is the first known conceptual framework of disability developed from the perspective of adults living with HIV.

• Results from this confirmatory factor analysis support the validity of four dimensions of disability experienced by adults living with HIV in the Episodic Disability Framework including: physical symptoms and impairments, mental health symptoms and impairments, difficulties carrying out day-to-day activities, and challenges to social inclusion.

• The Episodic Disability Framework provides a new way to conceptualize disability experienced by adults living with HIV. Clinicians can use this Framework to better understand episodic disability experienced by adults living with HIV. Clinicians can frame their assessments of disability to include physical and mental health symptoms and impairments as well as consider a patient’s ability to participate in society, and indicate areas to apply interventions or strategies to prevent or mitigate disability experienced by adults living with HIV.

• Episodic Disability Framework
• HIV
• validity

Acknowledgements

We gratefully acknowledge the Ontario HIV Treatment Network and the OCS Study Team. We thank Dr. Ann Burchell for reviewing an earlier draft of this manuscript.

We gratefully acknowledge all of the people living with HIV who volunteered to participate in the OHTN Cohort Study and the work and support of the past and present members of the OCS Governance Committee: Darien Taylor, Dr. Evan Collins, Dr. Greg Robinson, Shari Margolese, Patrick Cupido, Tony Di Pede, Rick Kennedy, Michael Hamilton, Ken King, Brian Finch, Lori Stoltz, Adrian Betts, Colleen Price, Tracey Conway, John MacTavish, Claire Kendall, Anita Benoit, Rosie Thein, Brian Huskins, Les Bowman, Dr. Ahmed Bayoumi, Dr. Clemon George and Dr. Curtis Cooper. We thank all the interviewers, data collectors, research associates and coordinators, nurses and physicians who provide support for data collection and extraction. The authors wish to thank the OHTN staff and their teams for data management and IT support (Mark Fisher, Director, IT), and OCS project coordination (Brooke Ellis, Coordinator, OCS Research). We also acknowledge the Public Health Laboratories, Public Health Ontario, for supporting record linkage with the HIV viral load database. The OHTN Cohort Study is supported by the Ontario Ministry of Health and Long-Term Care. The opinions, results and conclusions are those of the authors and no endorsement by the Ontario HIV Treatment Network is intended or should be inferred.