Patient reported outcome (PRO) measurement of disability in orthopaedic trauma to the upper extremity

Patient reported outcome (PRO) measurement of disability is integral to a patient-centered approach to health care and gauging the biopsychosocial impact of health conditions from the patient's perspective. This thesis investigates disability after proximal humerus, elbow and distal radius fractures; conditions that constitute a major burden in musculoskeletal health care and a substantial impact on health-related quality of life (HrQoL).
Disability is defined by the World Health Organisation (WHO) International Classification of Disability, Functioning and Health (ICF) as ‘a multi-dimensional construct involving a dynamic interaction between impairment, activity limitations and participation restrictions, that are influenced by contextual factors’. This international, consensus-based framework acts as a guide for the application of outcome measures in performing scientific research.
The WHO ICF also considers other patient perspectives on health and health care systems, including patient experience and patient activation within the contextual factors component. Patient experience encompasses aspects such as satisfaction, expectation management and confidence with care, and is measured using a variety of scales and questionnaires. Patient activation relates to 'the knowledge, skills and confidence a person has in managing their own health and health care'. This concept is quantified using patient activation measures (PAMs).
The overarching goal of this thesis is to identify the most influential factors predicting disability after proximal humerus, elbow and distal radius fractures. This work also aimed to define the relationship between disability, experience and activation to inform the development of a patient-centred approach to managing these challenging injuries.
The first systematic review highlights the dominance of psychosocial factors in influencing disability associated with a range of upper extremity conditions. Few studies have assessed this relationship in specific trauma populations. The second review underlines the paucity of upper extremity PRO measures incorporating fracture populations in their original development. It also reports the highly variable quality of initial studies introducing these measures. The final review demonstrates the superior measurement properties of computer adaptive tests (CATs), a contemporary form of PRO measurement, over fixed-scale instruments. Few studies apply CATs in trauma and few have been performed outside the U.S. These reviews collectively informed the selection of PRO measures for the experimental studies in this thesis.
Firstly, a pilot study establishes a methodology for addressing the key objectives and the feasibility of using a web-based platform for measuring patient outcomes. Strong correlation between PROMIS Physical function CAT, a computer adaptive measure of physical function, and the Quick Disabilities of the Arm, Shoulder and Hand (QuickDASH), a region-specific, fixed scale is observed. The core experiment (n=734) expands upon this work and demonstrates correlations between a range of generic and region-specific measures in an upper extremity trauma population. Disability is shown to correlate with satisfaction, and the strength of this correlation increases over time. Applying PRO measures of disability in populations with shoulder, elbow and wrist fractures show that self-efficacy (i.e. coping ability) within 6 weeks of injury was the strongest predictor of medium-term disability at 6-9 months. In proximal humerus and elbow fractures, kinesiophobia (i.e. fear of movement) within a week of injury was also a strong predictor of disability. The final study concludes that greater patient activation is associated with greater health-related and experiential outcomes. However, psychosocial factors including self-efficacy, superseded activation in predicting disability and satisfaction.
This thesis contributes evidence for musculoskeletal health care professionals (HCPs) to consider specific psychosocial factors, such as coping abilities, and patient activation early in the recovery process to improve disability following these injuries.

Keywords: Patient Activation
Disability
Patient Experience
Upper Extremity Trauma
Patient Outcomes
Health Related Outcomes
Shoulder fracture
Elbow fracture
Patient Reported Outcome Measurement
Wrist fracture
Advisor: Gwilym, S
Ring, D
Williams, M
Lamb, S