1 School of Population and Public Health, University of British Columbia; 2206 E Mall, Vancouver, British Columbia, V6T 1Z3, Canada. Electronic address: jlheureux@cheos.ubc.ca.
2 Faculty of Health Sciences, Simon Fraser University; Blusson Hall, Room, 11300, 8888 University Drive, Burnaby, British Columbia, V5A 1S6, Canada; British Columbia Cancer Research Centre, 675 W 10th Avenue; Vancouver, British Columbia, V5Z 1L3, Canada. Electronic address: hcowan@ccrc.ca.
3 Sauder School of Business, University of British Columbia; 2053 Main Mall, Vancouver, British Columbia, V6T 1Z2, Canada; John Molson School of Business, Concordia University, 1450 Guy Street, Montreal, Quebec, H3H 0A1, Canada. Electronic address: gary.johns@concordia.ca.
4 Patient Voices Network, 201-750 Pender Street, Vancouver, British Columbia, V6C 2T8, Canada.
5 Division of Infectious Diseases, Vancouver General Hospital, 2733 Heather Street, Rm C328 HP East, Vancouver, British Columbia, V5Z 3J5, Canada. Electronic address: tsteiner@mail.ubc.ca.
6 Centre for Health Evaluation and Outcome Sciences, 570-1081 Burrard Street, Vancouver, British Columbia, V6Z 1Y6, Canada.
7 Centre for Health Evaluation and Outcome Sciences, 570-1081 Burrard Street, Vancouver, British Columbia, V6Z 1Y6, Canada. Electronic address: hsun@hivnet.ubc.ca.
8 School of Population and Public Health, University of British Columbia; 2206 E Mall, Vancouver, British Columbia, V6T 1Z3, Canada; Centre for Health Evaluation and Outcome Sciences, 570-1081 Burrard Street, Vancouver, British Columbia, V6Z 1Y6, Canada; Faculty of Pharmaceutical Sciences, University of British Columbia; 2405 Wesbrook Mall, Vancouver, British Columbia, V6T 1Z3, Canada. Electronic address: wzhang@cheos.ubc.ca.

Objectives: From the perspectives of patients and caregivers, the objectives were: identifying which result presentations, describing work productivity loss (WPL) outcomes, are most understandable; measuring which presentations are important to report; and investigating which WPL outcomes are viewed as important alongside clinical trials results.

Methods: We used a four phased, sequential mixed methods design, guided by patient-oriented research engaging one patient partner. We conducted think-aloud interviews, in British Columbia/Canada, to review WPL results and our survey measuring the understandability and importance of the results, and importance of each WPL outcome. We surveyed a sample representing working Canadians. The findings were summarized and analyzed using linear and logistic regression. We conducted sub-group analyses; one was gender based. All regressions were conducted using generalized estimating equations.

Results: In our qualitative phases, 20 patients and caregivers were interviewed. Participants recommended for the results to be brief, simple, and represented visually. Then, 118 patients and 120 caregivers were surveyed. The results presented in days or cost yielded the highest understandability and importance to report. All WPL outcomes were identified as important to somewhat important to report by most. The associations indicated that the more understandable the result presentation was, the more likely it was to be rated as important. Age was the only factor significantly associated with selecting days or cost as the most important result.

Conclusion: Presenting WPL results in days and cost, using lay terms and visual supports, were viewed as easiest to understand and most important to report in clinical trials by patients and caregivers. Our findings are supportive of clinical trials standardizing the measurement of WPL to include all of its outcomes (absenteeism, presenteeism, employment status changes and total work productivity loss), in addition to tools assessing the comprehensiveness of WPL results to be provided to patients and caregivers.