Strategies to improve patient-reported outcome completion rates in longitudinal studies
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Strategies to improve patient-reported outcome completion rates in longitudinal studies. / Nielsen, Lene Kongsgaard; King, Madeleine; Möller, Sören; Jarden, Mary; Andersen, Christen Lykkegaard; Frederiksen, Henrik; Gregersen, Henrik; Klostergaard, Anja; Steffensen, Morten Saaby; Pedersen, Per Trøllund; Hinge, Maja; Frederiksen, Mikael; Jensen, Bo Amdi; Helleberg, Carsten; Mylin, Anne Kærsgaard; Abildgaard, Niels.
I: Quality of Life Research, Bind 29, 2020, s. 335-346.Publikation: Bidrag til tidsskrift › Tidsskriftartikel › Forskning › fagfællebedømt
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TY - JOUR
T1 - Strategies to improve patient-reported outcome completion rates in longitudinal studies
AU - Nielsen, Lene Kongsgaard
AU - King, Madeleine
AU - Möller, Sören
AU - Jarden, Mary
AU - Andersen, Christen Lykkegaard
AU - Frederiksen, Henrik
AU - Gregersen, Henrik
AU - Klostergaard, Anja
AU - Steffensen, Morten Saaby
AU - Pedersen, Per Trøllund
AU - Hinge, Maja
AU - Frederiksen, Mikael
AU - Jensen, Bo Amdi
AU - Helleberg, Carsten
AU - Mylin, Anne Kærsgaard
AU - Abildgaard, Niels
PY - 2020
Y1 - 2020
N2 - Purpose: The 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. Methods: The 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. Results: The 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. Conclusions: Electronic 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.
AB - Purpose: The 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. Methods: The 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. Results: The 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. Conclusions: Electronic 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.
KW - Health-related quality of life
KW - Missing data
KW - Multiple myeloma
KW - Patient-reported outcomes
KW - Patient-reported outcomes completion rate
U2 - 10.1007/s11136-019-02304-8
DO - 10.1007/s11136-019-02304-8
M3 - Journal article
C2 - 31549365
AN - SCOPUS:85074042991
VL - 29
SP - 335
EP - 346
JO - Quality of Life Research
JF - Quality of Life Research
SN - 0962-9343
ER -
ID: 238672175