Abstract

Background: To the best of our knowledge, there is no validated patient reported outcomes instrument evaluating the effectiveness of PR on health-related quality of life (HRQOL) for COPD patients; instead, respiratory-specific or generic instruments are used for this purpose.

Aim: Develop and validate a self-administered, HRQOL instrument to capture perspectives of COPD patients undergoing PR.

Methods: 1) We conducted interviews with COPD patients; 2) From these, we identified 45 items of importance. Categories included: Knowledge of COPD and medications; Mental health; Physical limitations; Social support and interaction; Sleep; Misc. side effects (MSE) (i.e., trouble laughing and finishing meals); 3) Items are ranked on a scale of 1 (not important) to 5 (very important); These items will be refined and the list shortened via further input from more COPD patients, caregivers, and health care providers (HCP) of PR (n=100); 4) We will then test the finalized questionnaire for validity and pre-post PR responsiveness in a new sample.


Results: Our data shows that patients and caregivers (PC) do not agree with HCP on the importance of most outcome areas identified. At least 90% of HCP (n=11) rated 27/45 of the items as important or very important (?4) with a median of 5. PC (n=15) rated only 4/45 of the items ?4. These items were knowledge of COPD, medications, difficulty exercising and positive outlook. Sleep and MSE were rated the lowest by PC, but not by HCP.


Conclusions: Interestingly, PC did not agree with HCP on the importance of most items. Consensus was only achieved on a fraction of the items. Work continues to refine the tool.