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Development of an EORTC questionnaire module to be used in health‐related quality‐of‐life assessment for patients with multiple myeloma
Author(s) -
STEAD MAXINE,
BROWN JULIA,
VELIKOVA GALINA,
KAASA STEIN,
WISLØFF FINN,
CHILD J.,
HIPPE ERIK,
HJORTH MARTIN,
SEZER ORHAN,
SELBY PETER
Publication year - 1999
Publication title -
british journal of haematology
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.907
H-Index - 186
eISSN - 1365-2141
pISSN - 0007-1048
DOI - 10.1046/j.1365-2141.1999.01206.x
Subject(s) - multiple myeloma , medicine , quality of life (healthcare) , family medicine , cancer , clinical trial , disease , physical therapy , nursing
A multiple myeloma‐specific quality‐of‐life questionnaire module has been designed in collaboration with the EORTC Quality‐of‐Life Study Group to be used in clinical trials with the EORTC QLQ‐C30, a general cancer questionnaire. Strict methodology was employed to ensure thorough and appropriate development of the module. An extensive literature review was performed to identify health‐related quality‐of‐life issues relevant to patients with multiple myeloma. Semi‐structured interviews were then carried out in several European countries with health‐care providers experienced in the treatment of patients with multiple myeloma, and with a group of patients with multiple myeloma, to identify the issues which were most important to patients. A questionnaire was devised from the list of issues, using a 1‐week time‐frame and response categories consistent with the EORTC QLQ‐C30. The provisional questionnaire and the EORTC QLQ‐C30 were administered to patients with multiple myeloma in each participating country with further semi‐structured interviews to refine the content and design of the questionnaire. A review of the results obtained in each stage of development resulted in a 24‐item myeloma‐specific module, the EORTC QLQ‐MY24, which assesses disease‐specific symptoms and their impact on everyday life, treatment side‐effects, social support, and future perspective. The module is currently undergoing further international field‐testing to assess its psychometric properties.