title: Which health-related quality of life aspects are important to patients with chronic myeloid leukemia receiving targeted therapies and to health care professionals? GIMEMA and EORTC Quality of Life Group.
abstract: The objective of this study was to investigate the health-related quality of life (HRQOL) aspects valued the most by patients with chronic myeloid leukemia (CML) receiving targeted therapies (TT), and to compare their perception with that of health-care professionals' (HCPs). Semi-structured interviews were conducted with 137 CML patients receiving TT from five different countries. An additional sample of 99 CML patients, completing an online interview, was considered for supportive analyses. A sample of 59 HCPs from 12 countries also participated in the study. Patients and HCPs were asked to rate and rank the importance of a predefined list of 74 HRQOL aspects of potential relevance for CML patients. Patients and HCPs agreed that the following five aspects are most important: fatigue, muscle cramps, swelling, worries, and uncertainty about health condition in the future, and importance of social support in coping with the disease. However, the difference in rankings between the two groups was substantial with respect to other HRQOL aspects investigated. Patients valued some issues related to symptoms much higher than HCPs, thus suggesting that a better symptom management could be the crucial aspects to improve HRQOL of CML patients.
authors.affiliation: Health Outcomes Research Unit, Italian Group for Adult Hematologic Diseases (GIMEMA), GIMEMA Data Center, Via Benevento, 6, 00161, Rome, Italy. f.efficace@gimema.it
authors.forename: Fabio
authors.initials: F
authors.lastname: Efficace
authors.forename: Massimo
authors.initials: M
authors.lastname: Breccia
authors.forename: Susanne
authors.initials: S
authors.lastname: Saussele
authors.forename: Ute
authors.initials: U
authors.lastname: Kossak-Roth
authors.forename: Annarita
authors.initials: A
authors.lastname: Cardoni
authors.forename: Giovanni
authors.initials: G
authors.lastname: Caocci
authors.forename: Weichu
authors.initials: W
authors.lastname: Chie
authors.forename: Adel
authors.initials: A
authors.lastname: Naeem
authors.forename: Ourania
authors.initials: O
authors.lastname: Nicolatou-Galitis
authors.forename: Kim
authors.initials: K
authors.lastname: Cocks
authors.forename: Marco
authors.initials: M
authors.lastname: Vignetti
authors.forename: Michele
authors.initials: M
authors.lastname: Baccarani
authors.forename: Franco
authors.initials: F
authors.lastname: Mandelli
authors.forename: Mirjam
authors.initials: M
authors.lastname: Sprangers
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D000970:Antineoplastic Agents / Q000627:therapeutic use*; D001007:Anxiety; D001549:Benzamides; D004487:Edema / Q000209:etiology / Q000523:psychology; D005060:Europe; D005221:Fatigue / Q000209:etiology / Q000523:psychology; D005260:Female; D006282:Health Personnel / Q000523:psychology*; D006801:Humans; D000068877:Imatinib Mesylate; D007493:Iraq; D015464:Leukemia, Myelogenous, Chronic, BCR-ABL Positive / Q000188:drug therapy / Q000523:psychology*; D008297:Male; D008875:Middle Aged; D058990:Molecular Targeted Therapy / Q000523:psychology*; D009120:Muscle Cramp / Q000209:etiology / Q000523:psychology; D010361:Patients / Q000523:psychology*; D010879:Piperazines / Q000627:therapeutic use*; D047428:Protein Kinase Inhibitors / Q000627:therapeutic use*; D011743:Pyrimidines / Q000627:therapeutic use*; D011788:Quality of Life; D012944:Social Support; D011795:Surveys and Questionnaires; D013624:Taiwan; D055815:Young Adult
chemical_list: D000970:Antineoplastic Agents; D001549:Benzamides; D010879:Piperazines; D047428:Protein Kinase Inhibitors; D011743:Pyrimidines; D000068877:Imatinib Mesylate