title: Quality of life of patients with chronic lymphocytic leukaemia in the Netherlands: results of a longitudinal multicentre study.
abstract: OBJECTIVE
  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.
authors.affiliation: Department of Health Policy and Management, Erasmus University Rotterdam, Institute for Medical Technology Assessment, P.O. Box 1738, 3000DR, Rotterdam, The Netherlands. goor@bmgeur.nl.
authors.forename: K M
authors.initials: KM
authors.lastname: Holtzer-Goor
authors.affiliation: Medisch Spectrum Twente, Enschede, The Netherlands.
authors.forename: M R
authors.initials: MR
authors.lastname: Schaafsma
authors.affiliation: Medisch Centrum Leeuwarden, Leeuwarden, The Netherlands.
authors.forename: P
authors.initials: P
authors.lastname: Joosten
authors.affiliation: Leiden University Medical Center, Leiden, The Netherlands.|Reinier de Graaf Groep, Delft, The Netherlands.
authors.forename: E F M
authors.initials: EF
authors.lastname: Posthuma
authors.affiliation: Meander Medisch Centrum, Amersfoort, The Netherlands.
authors.forename: S
authors.initials: S
authors.lastname: Wittebol
authors.affiliation: VU University Medical Center, Amsterdam, The Netherlands.
authors.forename: P C
authors.initials: PC
authors.lastname: Huijgens
authors.affiliation: Ziekenhuis Rijnstate, Arnhem, The Netherlands.
authors.forename: E J M
authors.initials: EJ
authors.lastname: Mattijssen
authors.affiliation: MÃ¡xima Medisch Centrum, Veldhoven, The Netherlands.|MUMC+, Maastricht, The Netherlands.
authors.forename: G
authors.initials: G
authors.lastname: Vreugdenhil
authors.affiliation: Medisch Centrum Alkmaar, Alkmaar, The Netherlands.
authors.forename: H
authors.initials: H
authors.lastname: Visser
authors.affiliation: Catharina-ziekenhuis, Eindhoven, The Netherlands.
authors.forename: W G
authors.initials: WG
authors.lastname: Peters
authors.affiliation: Ommelander Ziekenhuis Groep, Delfzijl, The Netherlands.
authors.forename: Z
authors.initials: Z
authors.lastname: Erjavec
authors.affiliation: Hagaziekenhuis, Den Haag, The Netherlands.
authors.forename: P W
authors.initials: PW
authors.lastname: Wijermans
authors.affiliation: UMCG, University of Groningen, Groningen, The Netherlands.
authors.forename: S M G J
authors.initials: SM
authors.lastname: Daenen
authors.affiliation: Zaans Medisch Centrum, Zaandam, The Netherlands.
authors.forename: K G
authors.initials: KG
authors.lastname: van der Hem
authors.affiliation: Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands.
authors.forename: M H J
authors.initials: MH
authors.lastname: van Oers
authors.affiliation: Department of Health Policy and Management, Erasmus University Rotterdam, Institute for Medical Technology Assessment, P.O. Box 1738, 3000DR, Rotterdam, The Netherlands.
authors.forename: C A
authors.initials: CA
authors.lastname: Uyl-de Groot
mesh_terms: D000328:Adult; D000368:Aged; D002699:Chlorambucil / Q000009:adverse effects / Q000627:therapeutic use; D004417:Dyspnea / Q000523:psychology; D005221:Fatigue / Q000523:psychology; D005260:Female; D006304:Health Status; D006801:Humans; D015451:Leukemia, Lymphocytic, Chronic, B-Cell / Q000188:drug therapy / Q000523:psychology*; D008137:Longitudinal Studies; D008297:Male; D008875:Middle Aged; D009426:Netherlands; D011788:Quality of Life; D012893:Sleep Wake Disorders / Q000523:psychology; D011795:Surveys and Questionnaires
chemical_list: D002699:Chlorambucil
keywords: Area under curve; B cell; Chronic; Leukaemia; Lymphocytic; Observational study; Quality of life