Electronic Thesis and Dissertation Repository

Thesis Format

Monograph

Degree

Master of Science

Program

Health and Rehabilitation Sciences

Supervisor

Sibbald, Shannon L.

Abstract

Patient experience plays a crucial role in chronic obstructive pulmonary disease (COPD) care, encompassing clinical, emotional, social, and relational factors. The PREM-C9, developed by Hodson et al. (2019) in the UK, is the first COPD-specific patient-reported experience measure. Our research explored the experiences of healthcare providers and patients with the adapted PREM-C9+ in Southwestern Ontario, Canada. Adaptations included updating provider titles to "primary care provider" and adding a 10th item to assess overall healthcare experiences, ensuring the tool’s relevance to Canada.

Using a descriptive qualitative approach, focus groups with 14 healthcare providers and interviews with 4 patients were conducted. Reflexive thematic analysis identified challenges, including scoring, terminology, redundancy, and health and digital literacy barriers. Recommendations for improvement included simplifying language and clarifying instructions. The study emphasizes the importance of tools like the PREM-C9+ in patient-centered care and highlights the need for further research to improve their usability in diverse healthcare contexts.

Summary for Lay Audience

Patient-reported experience measures (PREMs) capture a patient’s perception of their healthcare experiences. Research shows PREMs offer valuable insights into patient perspectives, guide quality improvement initiatives, and help healthcare providers evaluate their services. In Canada, gaps remain in understanding patient experiences, particularly for those living with chronic obstructive pulmonary disease (COPD). Patients with COPD often face a gradual decline in quality of life and physical health. Understanding their experiences fosters open, meaningful dialogue between patients and providers, leading to collaborative treatment and care plans.

Traditionally, patient involvement has relied on satisfaction surveys and patient-reported outcome measures (PROMs). However, these tools often fail to fully capture patients’ perspectives on care quality. Patient-reported experience measures (PREMs) address this gap by focusing on interactions with healthcare systems and the degree to which patients’ needs are met. Despite their importance, there is no widely used PREM specific to COPD care in Canada.

Our study explored how healthcare providers and patients with COPD in primary care settings experience the administration and completion of the PREM-C9+. Building on Hodson and colleagues’ original PREM-C9 first validated in the United Kingdom, we expanded and adapted it for use in Canada. Through focus groups and interviews, we found that providers often acted as mediators, helping patients understand the tool and using it to identify unmet needs and improve care. While the PREM-C9+ was efficient to integrate into routine care, challenges included scoring, terminology, redundancy, and health and digital literacy. Recommendations for improvement included simplifying language, clarifying instructions, and enhancing usability, which informed a revised version of the PREM-C9+.

Our findings highlight the value of tools like the PREM-C9+ in advancing patient-centered care by engaging patients in their healthcare journey and addressing their unique needs. For providers, it offers actionable insights to improve communication and care delivery. This research enriches the literature on PREMs and emphasizes the need for tailored tools across diverse care settings. Future research can further test and refine the revised PREM-C9+ to enhance its impact on patient-centered care.

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