Abstract
PurposeThe quality of patient-reported outcome (PRO) data can be compromised by non-response (NR) to scheduled questionnaires, particularly if reasons for NR are related to health problems, which may lead to unintended bias. The aim was to investigate whether electronic reminders and real-time monitoring improve PRO completion rate.MethodsThe population-based study “Quality of life in Danish multiple myeloma patients” is a longitudinal, multicentre study with consecutive inclusion of treatment-demanding newly diagnosed or relapsed patients with multiple myeloma. Education of study nurses in the avoidance of NR, electronic reminders, 7-day response windows and real-time monitoring of NR were integrated in the study. Patients complete PRO assessments at study entry and at 12 follow-up time points using electronic or paper questionnaires. The effect of the electronic reminders and real-time monitoring were investigated by comparison of proportions of completed questionnaires before and after each intervention.ResultsThe first 271 included patients were analysed; of those, 249 (85%) chose electronic questionnaires. Eighty-four percent of the 1441 scheduled PRO assessments were completed within the 7-day response window and 11% after real-time monitoring, achieving a final PRO completion rate of 95%. A significant higher proportion of uncompleted questionnaires were completed after the patients had received the electronic reminder and after real-time monitoring.ConclusionsElectronic reminders and real-time monitoring contributed to a very high completion rate in the study. To increase the quality of PRO data, we propose integrating these strategies in PRO studies, however highlighting that an increase in staff resources is required for implementation.
Highlights
Multiple myeloma (MM) is an incurable malignancy of plasma cells in the bone marrow
The improved prognosis is mediated by the introduction of high dose chemotherapy with autologous stem cell support (HDT) in the 1990s, new treatment options with immunomodulatory drugs (IMiDs), such as thalidomide, lenalidomide and pomalidomide [6,7,8], and the proteasome inhibitors, bortezomib, carfilzomib and ixazomib [9,10,11]
A significant higher proportion of uncompleted questionnaires were completed after the patients had received the electronic reminder and after real-time monitoring
Summary
Multiple myeloma (MM) is an incurable malignancy of plasma cells in the bone marrow. MM is associated with severe morbidity, caused by bone destruction and pathological bone fractures, renal dysfunction, high infection rate and potential physical disability [1, 2]. The prognosis of MM has improved markedly over the past 20 years, and the median survival of MM patients under the age of 70 has increased from 3 years [3] to 6–7 years. The improved prognosis is mediated by the introduction of high dose chemotherapy with autologous stem cell support (HDT) in the 1990s, new treatment options with immunomodulatory drugs (IMiDs), such as thalidomide, lenalidomide and pomalidomide [6,7,8], and the proteasome inhibitors, bortezomib, carfilzomib and ixazomib [9,10,11]. Treatment choice in MM depends on the patients’ age, disease complications, existing comorbidity and whether the patient is judged fit for specific regimens, such as HDT. Treatment usually involves repeated cycles of a 2–3 drug
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