Purpose: High-dose melphalan and autologous stem cell transplantation (ASCT) are associated with high symptom burden. This study aimed to explore multiple myeloma (MM) patients' experience of symptom frequency, intensity, and distress during therapy.
Methods: This descriptive longitudinal study enrolled 29 MM patients who completed the 43-item PROVIVO questionnaire, measuring symptom experience across the dimensions of frequency, intensity, and distress at four assessment points: hospital admission (T0), leucocyte nadir (T1), discharge (T2), and 30 days post discharge (T3). Symptom assessment covered five categories: (1) physical, (2) emotional, (3) cognitive, (4) male/female urogenital symptoms, and (5) follow-up care planning (e.g., financial problems). Results were displayed as heat maps and bubble graphs for each patient, differences between T0 and T4 individually assessed, and intensity (IMS) and mean distress scores (DMS) calculated on a scale from 0 to 4.
Results: The most frequent, intense, and distressing physical symptoms were fatigue, diarrhea, and decreased appetite. As expected, peak symptom intensity (decreased appetite 2.79) and distress (diarrhea 2.11) were reported during high-dose melphalan and the leucocyte nadir (T1). Thereafter, most symptoms' intensity and distress improved. Items on urogenital symptoms remained predominantly unanswered or patients were sexually inactive.
Conclusions: PROVIVO enabled exploration of various dimensions of MM patients' symptom experiences, which differed substantially before and after ASCT. Our results suggest that high-dose melphalan, ASCT, and other intensive novel agent therapies warrant targeted symptom management programs that include focused patient support.
Keywords: Autologous stem cell transplantation; High-dose melphalan; Multiple myeloma; Symptom experience; Symptom management.