Majken M Brønserud1, Maria Iachina2, Anders Green3, Mogens Groenvold4, Liv Dørflinger5, Erik Jakobsen6. 1. Odense Patient data Exploratory Network (OPEN), Odense University Hospital/Institute of Clinical Research, University of Southern Denmark, J.B. Winsløws Vej 9 A, 3rd floor, DK-5000, Odense C, Denmark. Electronic address: Majken.Munk.Broenserud@rsyd.dk. 2. Center for Clinical Epidemiology and Research Unit of Clinical Epidemiology, Odense University Hospital, Kløvervænget 30, DK-5000, Odense C, Denmark. 3. Odense Patient data Exploratory Network (OPEN), Odense University Hospital/Institute of Clinical Research, University of Southern Denmark, J.B. Winsløws Vej 9 A, 3rd floor, DK-5000, Odense C, Denmark. 4. Research Unit, Department of Palliative Medicine, Bispebjerg Hospital, Bispebjerg Bakke 23, DK-2400, Copenhagen NV, Denmark; Department of Public Health, University of Copenhagen, Øster Farimagsgade 5, DK-1014, Copenhagen K, Denmark. 5. Department for Management and Staff, Steno Diabetes Center Copenhagen, Niels Steensensvej 2, DK-2820, Gentofte, Denmark. 6. Odense Patient data Exploratory Network (OPEN), Odense University Hospital/Institute of Clinical Research, University of Southern Denmark, J.B. Winsløws Vej 9 A, 3rd floor, DK-5000, Odense C, Denmark; The Danish Lung Cancer Registry, Department of Thoracic Surgery, Odense University Hospital, J.B Winsløws Vej 4, Entrance 20, Penthouse 2nd floor, DK-5000, Odense C, Denmark.
Abstract
OBJECTIVES: Our objectives were to examine the feasibility of a nationwide collection of patient-reported outcomes (PROs) in a lung cancer population as well as in various sub-populations, and to describe the characteristics of responders compared to non-responders. MATERIALS AND METHODS: All patients diagnosed with lung cancer in Denmark are registered in the Danish Lung Cancer Registry (DLCR). The 7,295 patients registered in DLCR from 1 October 2013 until 30 September 2015 who had received treatment were eligible. Using the European Organisation for Research and Treatment of Cancer (EORTC) QLQ-C30 and QLQ-LC13 questionnaires, we employed two different methods of delivery, resulting in two different project parts. In project part 1, the baseline questionnaire was handed out at the hospital departments before treatment. The following questionnaires were sent out as paper versions three times within one year. In project part 2, all questionnaires were electronic versions delivered in association with planned hospital visits. RESULTS: Of the 7,295 lung cancer patients 4,229 (58%) completed at least one questionnaire, and 2,459 completed two or more. Only 562 baseline questionnaires were returned before treatment (7.7%), whereas 43.4%-57.4% of the potential responders completed the following questionnaires. The best response rates were achieved among patients treated with surgery and among patients who discussed their questionnaires with health care personnel. When comparing patient characteristics, responders had a significantly better health and a higher socioeconomic position than non-responders. CONCLUSION: A decentralised model used for delivering the initial questionnaire to the patients was insufficient. It is our estimation that sending out electronic versions of the baseline questionnaires, as was done with the following questionnaires, would result in a significantly better patient coverage. Despite the severe morbidity and high mortality rate in lung cancer, reasonable response rates were achieved at follow-ups to this method, and PRO collection in this population was feasible.
OBJECTIVES: Our objectives were to examine the feasibility of a nationwide collection of patient-reported outcomes (PROs) in a lung cancer population as well as in various sub-populations, and to describe the characteristics of responders compared to non-responders. MATERIALS AND METHODS: All patients diagnosed with lung cancer in Denmark are registered in the Danish Lung Cancer Registry (DLCR). The 7,295 patients registered in DLCR from 1 October 2013 until 30 September 2015 who had received treatment were eligible. Using the European Organisation for Research and Treatment of Cancer (EORTC) QLQ-C30 and QLQ-LC13 questionnaires, we employed two different methods of delivery, resulting in two different project parts. In project part 1, the baseline questionnaire was handed out at the hospital departments before treatment. The following questionnaires were sent out as paper versions three times within one year. In project part 2, all questionnaires were electronic versions delivered in association with planned hospital visits. RESULTS: Of the 7,295 lung cancerpatients 4,229 (58%) completed at least one questionnaire, and 2,459 completed two or more. Only 562 baseline questionnaires were returned before treatment (7.7%), whereas 43.4%-57.4% of the potential responders completed the following questionnaires. The best response rates were achieved among patients treated with surgery and among patients who discussed their questionnaires with health care personnel. When comparing patient characteristics, responders had a significantly better health and a higher socioeconomic position than non-responders. CONCLUSION: A decentralised model used for delivering the initial questionnaire to the patients was insufficient. It is our estimation that sending out electronic versions of the baseline questionnaires, as was done with the following questionnaires, would result in a significantly better patient coverage. Despite the severe morbidity and high mortality rate in lung cancer, reasonable response rates were achieved at follow-ups to this method, and PRO collection in this population was feasible.
Authors: Saleh A Alessy; Elizabeth A Davies; Janette Rawlinson; Matthew Baker; Margreet Lüchtenborg Journal: BMJ Open Date: 2019-12-16 Impact factor: 2.692
Authors: Liv Marit Valen Schougaard; Annette de Thurah; Jakob Christensen; Kirsten Lomborg; Helle Terkildsen Maindal; Caroline Trillingsgaard Mejdahl; Jesper Medom Vestergaard; Trine Nøhr Winding; Karin Biering; Niels Henrik Hjollund Journal: Qual Life Res Date: 2020-01-03 Impact factor: 4.147