caa a22 4500 606178961 CHVBK 20210128100759.0 cr unu---uuuuu 210128e20151201xx s 000 0 eng 10.1007/s11136-015-1039-y doi (NATIONALLICENCE)springer-10.1007/s11136-015-1039-y Quality of life of patients with chronic lymphocytic leukaemia in the Netherlands: results of a longitudinal multicentre study [Elektronische Daten] [K. Holtzer-Goor, M. Schaafsma, P. Joosten, E. Posthuma, S. Wittebol, P. Huijgens, E. Mattijssen, G. Vreugdenhil, H. Visser, W. Peters, Z. Erjavec, P. Wijermans, S. Daenen, K. van der Hem, M. van Oers, C. Uyl-de Groot] Purpose: To describe the health-related quality of life (HRQoL) of an unselected population of patients with chronic lymphocytic leukaemia (CLL) including untreated patients. Methods: HRQoL was measured by the EORTC QLQ-C30 including the CLL16 module, EQ-5D, and VAS in an observational study over multiple years. All HRQoL measurements per patient were connected and analysed using area under the curve analysis over the entire study duration. The total patient group was compared with the general population, and three groups of CLL patients were described separately, i.e. patients without any active treatment ("watch and wait”), chlorambucil treatment only, and patients with other treatment(s). Results: HRQoL in the total group of CLL patients was compromised when compared with age- and gender-matched norm scores of the general population. CLL patients scored statistically worse on the VAS and utility score of the EQ-5D, all functioning scales of the EORTC QLQ-C30, and the symptoms of fatigue, dyspnoea, sleeping disturbance, appetite loss, and financial difficulties. In untreated patients, the HRQoL was slightly reduced. In all treatment stages, HRQoL was compromised considerably. Patients treated with chlorambucil only scored worse on the EORTC QLQ-C30 than patients who were treated with other treatments with regard to emotional functioning, cognitive functioning, bruises, uncomfortable stomach, and apathy. Conclusions: CLL patients differ most from the general population on role functioning, fatigue, concerns about future health, and having not enough energy. Once treatment is indicated, HRQoL becomes considerably compromised. This applies to all treatments, including chlorambucil, which is considered to be a mild treatment. The Author(s), 2015 Leukaemia nationallicence Lymphocytic nationallicence Chronic nationallicence B cell nationallicence Quality of life nationallicence Area under curve nationallicence Observational study nationallicence Holtzer-Goor K. Department of Health Policy and Management, Erasmus University Rotterdam, Institute for Medical Technology Assessment, P.O. Box 1738, 3000DR, Rotterdam, The Netherlands aut Schaafsma M. Medisch Spectrum Twente, Enschede, The Netherlands aut Joosten P. Medisch Centrum Leeuwarden, Leeuwarden, The Netherlands aut Posthuma E. Leiden University Medical Center, Leiden, The Netherlands aut Wittebol S. Meander Medisch Centrum, Amersfoort, The Netherlands aut Huijgens P. VU University Medical Center, Amsterdam, The Netherlands aut Mattijssen E. Ziekenhuis Rijnstate, Arnhem, The Netherlands aut Vreugdenhil G. Máxima Medisch Centrum, Veldhoven, The Netherlands aut Visser H. Medisch Centrum Alkmaar, Alkmaar, The Netherlands aut Peters W. Catharina-ziekenhuis, Eindhoven, The Netherlands aut Erjavec Z. Ommelander Ziekenhuis Groep, Delfzijl, The Netherlands aut Wijermans P. Hagaziekenhuis, Den Haag, The Netherlands aut Daenen S. UMCG, University of Groningen, Groningen, The Netherlands aut van der Hem K. Zaans Medisch Centrum, Zaandam, The Netherlands aut van Oers M. Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands aut Uyl-de Groot C. Department of Health Policy and Management, Erasmus University Rotterdam, Institute for Medical Technology Assessment, P.O. Box 1738, 3000DR, Rotterdam, The Netherlands aut Quality of Life Research Springer International Publishing 24/12(2015-12-01), 2895-2906 0962-9343 24:12<2895 2015 24 11136 https://doi.org/10.1007/s11136-015-1039-y text/html Onlinezugriff via DOI BK010053 XK010053 XK010000 Metadata rights reserved Springer special CC-BY-NC licence nationallicence 1 research-article jats NATIONALLICENCE NATIONALLICENCE NL-springer NATIONALLICENCE 856 40 https://doi.org/10.1007/s11136-015-1039-y text/html Onlinezugriff via DOI NATIONALLICENCE 700 1- Holtzer-Goor K. Department of Health Policy and Management, Erasmus University Rotterdam, Institute for Medical Technology Assessment, P.O. Box 1738, 3000DR, Rotterdam, The Netherlands aut NATIONALLICENCE 700 1- Schaafsma M. Medisch Spectrum Twente, Enschede, The Netherlands aut NATIONALLICENCE 700 1- Joosten P. Medisch Centrum Leeuwarden, Leeuwarden, The Netherlands aut NATIONALLICENCE 700 1- Posthuma E. Leiden University Medical Center, Leiden, The Netherlands aut NATIONALLICENCE 700 1- Wittebol S. Meander Medisch Centrum, Amersfoort, The Netherlands aut NATIONALLICENCE 700 1- Huijgens P. VU University Medical Center, Amsterdam, The Netherlands aut NATIONALLICENCE 700 1- Mattijssen E. Ziekenhuis Rijnstate, Arnhem, The Netherlands aut NATIONALLICENCE 700 1- Vreugdenhil G. Máxima Medisch Centrum, Veldhoven, The Netherlands aut NATIONALLICENCE 700 1- Visser H. Medisch Centrum Alkmaar, Alkmaar, The Netherlands aut NATIONALLICENCE 700 1- Peters W. Catharina-ziekenhuis, Eindhoven, The Netherlands aut NATIONALLICENCE 700 1- Erjavec Z. Ommelander Ziekenhuis Groep, Delfzijl, The Netherlands aut NATIONALLICENCE 700 1- Wijermans P. Hagaziekenhuis, Den Haag, The Netherlands aut NATIONALLICENCE 700 1- Daenen S. UMCG, University of Groningen, Groningen, The Netherlands aut NATIONALLICENCE 700 1- van der Hem K. Zaans Medisch Centrum, Zaandam, The Netherlands aut NATIONALLICENCE 700 1- van Oers M. Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands aut NATIONALLICENCE 700 1- Uyl-de Groot C. Department of Health Policy and Management, Erasmus University Rotterdam, Institute for Medical Technology Assessment, P.O. Box 1738, 3000DR, Rotterdam, The Netherlands aut NATIONALLICENCE 773 0- Quality of Life Research Springer International Publishing 24/12(2015-12-01), 2895-2906 0962-9343 24:12<2895 2015 24 11136