Health-related quality of life and disease-specific complaints among multiple myeloma patients up to 10 yr after diagnosis: results from a population-based study using the PROFILES registry
Article first published online: 1 AUG 2012
© 2012 John Wiley & Sons A/S
European Journal of Haematology
Volume 89, Issue 4, pages 311–319, October 2012
How to Cite
Mols, F., Oerlemans, S., Vos, A. H., Koster, A., Verelst, S., Sonneveld, P. and van de Poll-Franse, L. V. (2012), Health-related quality of life and disease-specific complaints among multiple myeloma patients up to 10 yr after diagnosis: results from a population-based study using the PROFILES registry. European Journal of Haematology, 89: 311–319. doi: 10.1111/j.1600-0609.2012.01831.x
- Issue published online: 13 SEP 2012
- Article first published online: 1 AUG 2012
- Accepted manuscript online: 4 JUL 2012 09:08AM EST
- Manuscript Accepted: 28 JUN 2012
- multiple myeloma;
- quality of life;
- disease-specific complaints;
- side effects
This prospective population-based study describes health-related quality of life (HRQOL) and disease-specific complaints of patients with multiple myeloma (MM) up to 10 yr post-diagnosis.
The Eindhoven Cancer Registry was used to select all patients diagnosed with MM from 1999 to 2010. Patients with MM completed the EORTC QLQ-C30 and EORTC QLQ-MY20 questionnaires at baseline (n = 156; 74% response rate) and 1 yr later (n = 80). The EORTC QLQ-C30 was also completed by an age- and sex-matched normative population (n = 500).
Patients with MM reported statistically significant and clinically relevant worse scores on all EORTC QLQ-C30 scales (all P's at least < 0.01) compared to the norm. Also, patients with MM reported a mean decrease (e.g., worsening) between baseline and 1-yr follow-up scores for: quality of life (mean, 68 vs. 55, respectively, P < 0.001; 74% of patients had a deteriorated score), fatigue (33 vs. 39, P < 0.05; 50%), nausea and vomiting (6.3 vs. 13, P < 0.05; 71%), pain (33 vs. 43, P < 0.05; 59%), and dyspnea (17 vs. 33, P < 0.001; 66%). The most bothering symptoms during the past week were tingling hands/feet (32%), back pain (28%), bone aches/pain (26%), pain in arm/shoulder (19%), and feeling drowsy (18%). Also, 37% worried about their future health, 34% thought about their disease, and 21% worried about dying.
Patients with MM experience a very high symptom burden and low HRQOL. Future studies should focus on possible mechanisms that can predict low HRQOL and high symptom burden in patients with MM and should investigate optimal ways to alleviate these.