Feasibility of Collecting Patient-Reported Outcomes After Major Cancer Surgery: A Survey of Kaiser Permanente Members Six Months After Cystectomy for Bladder Cancer
human subjects research, cancer, survey research and methods, patient experience/satisfaction
Background: Researchers seeking to understand the physical, socioemotional and quality-of-life impacts of serious health conditions such as cancer need to interact with patients during times of poor health if they hope to develop a more complete understanding of the patient experience. A common concern is these patients will be overburdened if asked to participate in research and that participation rates will be low. Our analysis describes recruitment methods and examines survey response rates among bladder cancer patients in the period after bladder removal surgery, when they may be facing health challenges and are adjusting to altered urinary function.
Methods: We conducted focus groups with bladder cancer patients with urinary diversions to identify topic domains and develop a patient-reported outcomes questionnaire. We then conducted a survey 6 months postsurgery at three Kaiser Permanente sites. Eligible patients had bladder removal and reconstruction surgery as identified from the electronic health record and confirmed through chart review. Patients were mailed a cover letter and a 30-page questionnaire, which included fixed-choice and open-ended questions on quality of life, health care decision-making, urinary function, sexual function, body image, coping and health care expenses. We placed up to 10 phone calls to nonrespondents. As explained in the cover letter, return of the survey was considered consent to participate.
Results: The participation rate was 69% (site range: 63%–78%); 88% of participants completed 95% or more of the scale items. The scales with the most missing items proportionally were spiritual well-being (8.9%), urinary function (5.9%), goal dissonance (5.6%) and decision regret (4.5%). Among 269 participants, 76% provided an estimate of total out-of-pocket expenses since bladder cancer surgery and 62% provided at least one estimate for specific categories of expenses.
Conclusion: Our results suggest that even during periods of serious health challenges, patients will participate in research studies and are willing to complete long questionnaires when they are highly relevant to their condition. Focus group reports from our study indicate that patients desire the opportunity to be heard and to share their experience, and that in doing so they hope to contribute to improving care for future bladder cancer patients.
Bulkley J, O'Keeffe Rosetti M, Wendel C, Davis J, Leo M, Weinmann S, Munneke J, Harrison T, Kwan M, Danforth K, McMullen C. Feasibility of collecting patient-reported outcomes after major cancer surgery: a survey of Kaiser Permanente members six months after cystectomy for bladder cancer. J Patient Cent Res Rev. 2017;4:198.