Understanding and Measuring Self-perceived Outcome following Ankle Reconstruction

The importance of capturing the patient’s perspective of the impact of their health condition and treatment is well-recognized. This information is often collected using patient-reported outcome measures (PROMs); however, such measures may overlook the patients’ perspective in favour of clinician or researchers’ opinions. The literature lacks sufficient evidence for the conceptual foundation and content validity (i.e. how well an instrument reflects the target construct) of existing PROMs used to assess ankle reconstruction (total ankle replacement and ankle fusion) based on patients’ lived experience. Guidelines for PROMs recommend qualitative research with the target population to support their conceptual development and establish content validity. This thesis investigates outcomes that are important to end-stage ankle arthritis patients who have undergone ankle reconstruction, and lays the foundation for their measurement. This is examined, first, by comparing the contents of commonly used PROMs to issues raised by patients. Broad domains (e.g. pain, physical function) were found to be important, but there were gaps in content, casting doubt on the comprehensiveness of these measures. Subsequently, an in-depth qualitative study explored patients’ experiences with ankle reconstruction. Two new concepts were identified that have not been previously described in the ankle literature. Recovery describes patients’ perception of ‘being better’, involving a series of appraisals and coping efforts based on the presence and importance of ongoing issues, sufficient resources for coping, and whether coping efforts are viewed as satisfactory. Vigilance represents patients’ perceived need to focus attention on their environment and ankles. These concepts offer a new understanding of how ankle reconstruction affects patients’ lives. This thesis then models a rigorous method for operationalizing these novel concepts for development of future PROMs for ankle reconstruction. A conceptual framework for vigilance is presented, which preserves the meaning of the qualitative data and grounds content- and format-related decisions necessary for PROM development in patients’ experiences. Measuring these outcomes is necessary and worthwhile to capture all meaningful outcomes to patients. These findings broaden the medical community’s definition of a ‘successful outcome’, and improve clinicians’ ability to communicate with individuals who have undergone ankle reconstruction or are considering the procedures.Ph.D