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

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Abstract
Background: 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.Methods: 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).Results: 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.Conclusion: 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.

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