QUALITY OF LIFE ISSUES IMPORTANT TO PATIENTS WITH HAEMATOLOGICAL MALIGNANCIES
Author(s)
Salek S1, Kamudoni P2, Oliva E3, Ionova T4
1University of Hertfordshire, Hatfield, UK, 2Institute for Medicines Development, Cardiff, UK, 3Hematology Unit, Reggio Calabria, Italy, 4Multinational Center for Quality of Life Research, St Petersburg, Russia
OBJECTIVES: To date the focus of both development and application of HRQoL instruments has been on research/clinical trials, but their application in clinical practice has been neglected. Therefore a PRO was conceptualized for use in clinical practice. The aim of this study was to explore the views of patients with haematological malignancies (HM) concerning the quality of life issues important to them. METHODS: Ethics approval was obtained from Bristol Ethics Committee. Adult patients (with myeloid or lymphoid neoplasm or acute leukemia according to 2008 WHO classification at any stage of disease) capable of reading/understanding English and able to give informed written consent were recruited into the study. This qualitative study employed semi-structured interviews (face-to-face or by phone) and survey (online) with open-ended questions for data collection. Interviews were tape recorded and transcribed verbatim. Content analysis was carried out using Nvivo9. RESULTS: 57 patients (male=37; female=20) with mean age of 61.8 (sd=9.1) and mean duration of disease of 3.7 (sd=3.1) were recruited into the study. 14 of the 17 interviews were face-to-face and remaining 40 were online surveys. Of the 57, 46 were multiple myeloma, 8 MDS, one NHL and 2 AML. Issues reported by patients were grouped into two broad categories: symptoms; and QoL. The symptoms were grouped into 5 categories: breathlessness; fractures; spinal problems; anaemia and black urine. 21 QoL issues were reported by patients with the highly prevalent items being ‘feeling angry’, ‘avoid crowds’, ‘strain on relationships’, ‘unable to do any activity’ and ‘doing things slowly’. These QoL issues appear to be unique to such patients. CONCLUSIONS: The findings of this study indicate that there are certain symptoms and QoL issues that are specific to patients with HM and thus deserve a dedicated recognition. This also demonstrates the depth and breadth of the impact of HM on physical and psychosocial functional behavior.
Conference/Value in Health Info
2015-11, ISPOR Europe 2015, Milan, Italy
Value in Health, Vol. 18, No. 7 (November 2015)
Code
PRM151
Topic
Methodological & Statistical Research
Topic Subcategory
PRO & Related Methods
Disease
Systemic Disorders/Conditions