MIAMI – Patients who are diagnosed with multiple myeloma can expect to live longer than in the past, but their symptom burden remains considerable for at least 10 years after diagnosis, a prospective, population-based, Dutch study has concluded.
"The symptom burden is not only caused by the disease itself but also by the new aggressive treatments," said Floortje Mols, Ph.D., of Tilburg (the Netherlands) University at the annual conference of the American Psychosocial Oncology Society.
Dr. Mols and her coauthors identified multiple myeloma patients in the Eindhoven (the Netherlands) Cancer Registry who had been diagnosed during 1999-2010 in that country. They surveyed the survivors twice – at baseline and a year later – along with an age- and sex-matched population-based cohort.
At baseline, 156 survivors reported significantly lower scores than did the control group on every subscale of the EORTC QLQ-C30 (European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire), a validated instrument that has been used in more than 3,000 published studies. No significant differences were seen in symptom and quality of life scores between short-term (defined as up to 5 years) and long-term (more than 5 years) survivors, she reported.
Physical functioning, fatigue, and dyspnea scores diverged from those in the controls most strikingly, but the difference was statistically significant for every subscale with P scores of less than 0.01 and beyond, said Dr. Mols, a medical psychologist at the university’s center of research on psychology in somatic diseases and the Comprehensive Cancer Centre South, Eindhoven.
In addition, multiple myeloma survivors reported a high rate of disease-specific symptoms, including tingling and numbness, pain, and drowsiness – even years beyond diagnosis. Peripheral neuropathy is a common side effect of therapy for multiple myeloma.
At baseline, 37% of short- and long-term survivors reported worrying about their health during the previous week, 34% reported worrying about their disease, and 21% reported worrying "very much or quite a bit" about dying.
In the second round, at a 1-year follow-up, 80 survivors (including some diagnosed more recently) responded to the same questionnaire. Over that time, quality of life had diminished further for 74% of respondents (mean score, 55 vs. 68; P less than .001).
Half of the patients reported more fatigue, 71% more nausea and vomiting, 59% more pain, and 66% more dyspnea than at baseline. The most bothersome symptoms cited in the follow-up survey included tingling of the hands and feet (32%), back pain (28%), bone aches and pain (26%), pain in the arms and shoulders (19%), and drowsiness (18%).
"Maximizing disease control while minimizing these symptoms with supportive care for the entire survivorship trajectory is, I think, one of the major challenges of multiple myeloma treatment," said Dr. Mols.
She recommended referral of survivors to specific cancer survivorship care programs for management of symptoms that extend beyond the active phase of their treatment.
Improvement – and Side Effects
Dr. William I. Bensinger, who was not affiliated with the study, said following the meeting that the results were "not surprising."
"We have made great strides in the management of multiple myeloma, and patients are clearly living longer. Some of these improved treatments, however, come with the risk of significant side effects," said Dr. Bensinger, professor of medicine at the University of Washington and Fred Hutchinson Cancer Research Center in Seattle.
Dr. Bensinger called the results "a wake-up call to my fellow oncologists that we need to do a better job of proactively managing symptoms of treatment in order to improve our patients’ quality of life."
Ebb and Flow in QOL
Another multiple myeloma specialist, Dr. Jayesh Mehta, a professor of medicine at Northwestern University in Chicago, said that quality of life may ebb and flow over the course of many years in survivors.
"What we see in a typical patient is somewhat impaired quality of life at baseline that may worsen or remain stable in the short term, but improves by a year after diagnosis, remains good for a few years – say, 3 to 5 – worsens somewhat when there is relapse due to disease and therapy, stabilizes as the disease responds, and then worsens again when the disease returns."
Funding for the study was provided by the Netherlands Organization for Scientific Research, the Dutch Cancer Society, the Jonker-Driessen Foundation, ZonMW (the Netherlands organization for health research and development), and PHAROS (Population-Based Haematological Registry for Observational Studies).