Real-time monitoring was associated with increased completion rates of patient-reported outcome (PRO) assessments, according to findings from a study of patients with multiple myeloma published in Quality of Life Research.
Because multiple myeloma is frequently characterized by severe morbidity (eg, bone fractures and renal dysfunction), a high symptom burden (eg, fatigue and pain), and the administration of multiple treatments over time, assessments of the health-related quality of life of patients with this disease are particularly important. Nevertheless, the results of clinical studies incorporating patient-reported outcome (PRO) measures have the potential to be biased by high levels of patient nonresponse to scheduled questionnaires.
This analysis evaluated the PRO assessment completion rate in a population-based, longitudinal study of the quality of life of patients with multiple myeloma following incorporation of real-time monitoring of PRO completion or nonresponse, as well as the use of electronic reminders.
In this study, completion of 2 to 4 PRO measures was planned at baseline and at 12 time points during the study (every 4 weeks for the first 6 months, and then every 3 months) within a 24-month follow-up period. At each time point, patients were asked to complete all relevant PRO measures, using either online or paper questionnaires, within 7 days of the target date. All study nurses received training on approaches to minimizing the PRO noncompletion rate, and participating patients were counseled on the importance of timely completion of the PRO assessments.
Included in this analysis were 271 patients with either newly diagnosed or relapsed/refractory multiple myeloma who at minimum, had completed PRO assessments at baseline and 4 weeks. Approximately one-fourth of patients were aged 76 years or older. Online and paper-based PRO assessments were completed by 85% and 15% of patients, respectively.
Although 84% of PRO assessments were completed on time, approximately two-thirds of the remaining 16% of PRO assessments were completed (ie, salvaged) after reminders were sent to those patients identified as nonresponders by real-time monitoring. Hence, a PRO completion rate of 95% was attained.
Identified predictors of PRO noncompletion included a low performance status and use of paper questionnaires.
“The same strategies might be useful to ensure high PRO completion rate in routine
assessment and clinical utilization of PRO measures in the broad group of cancer patients,” the researchers noted in their concluding remarks.
Nielsen LK, King M, Möller S, et al. Strategies to improve patient-reported outcome completion rates in longitudinal studies [published online September 23, 2019]. Qual Life Res. doi: 10.1007/s11136-019-02304-8