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Symptom experience of multiple myeloma (syMMex) patients treated with autologous stem cell transplantation following high-dose melphalan: a descriptive longitudinal study

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Abstract

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.

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Acknowledgements

We wish to express our gratitude to Gila Sellam of the Institute of Nursing Science, Basel, for her review and useful discussions concerning this paper. We are also deeply indebted to Prof. Dr. Anca Grosu (Radiation Oncology, UKF), Prof. Dr. Georg Herget, Prof. Dr. Norbert Südkamp (Orthopedic and Traumatology, UKF), and the entire interdisciplinary MM tumor board for their intensive support and fruitful interaction for the sake of our MM patients. We are also grateful to Dr. Anne Rebafka, Freiburg, to Chris Shultis, Basel, for proofreading the manuscript, to Prof. Dr. Hermann Einsele and Prof. Dr. Stefan Knop (University of Würzburg), and to Prof. Dr. Hartmut Goldschmidt (University of Heidelberg) for deeply supportive and insightful recommendations at national and international meetings regarding our results.

Funding

This work is supported by the Deutsche Krebshilfe (grants 1095969 and 111424 [to ME]).

Author information

Author notes

  1. Monika Engelhardt and Sabina De Geest contributed equally to this study.

Authors and Affiliations

  1. Department of Hematology/Oncology, University of Freiburg Medical Center, Freiburg, Germany

    Matthias Naegele & Monika Engelhardt

  2. Nursing Science, Faculty of Medicine, Department Public Health, University of Basel, Bernoullistrasse 28, CH-4056, Basel, Switzerland

    Matthias Naegele, Monika Kirsch, Katharina Fierz & Sabina De Geest

  3. Department of Hematology, University Hospital Basel, Basel, Switzerland

    Monika Kirsch

  4. Clinical Trials Unit, University of Freiburg, Freiburg, Germany

    Gabriele Ihorst

  5. Faculty of Medicine, University of Freiburg, Freiburg, Germany

    Gabriele Ihorst & Monika Engelhardt

  6. Academic Center for Nursing and Midwifery, KU Leuven, Leuven, Belgium

    Sabina De Geest

Authors
  1. Matthias Naegele
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  2. Monika Kirsch
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  3. Gabriele Ihorst
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  4. Katharina Fierz
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  5. Monika Engelhardt
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  6. Sabina De Geest
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Corresponding author

Correspondence to Sabina De Geest.

Ethics declarations

The analysis followed the guidelines of the Declaration of Helsinki principles and good clinical practice. All the patients gave written informed consent for institutionally initiated research studies and analyses of clinical outcome studies conforming to institutional review board guidelines. The study proposal was approved by the ethics committee of the University Hospital Freiburg, Germany (EV 339/12).

Conflict of interest

The authors declare that they have no conflicts of interest.

Additional information

The article is dedicated to Mrs. Monika Hasemann, Head of the Nursing Service Medical Center University of Freiburg (UKF), and Prof. Dr. Justus Dyuster, Director of Hematology, Oncology, Stem Cell Transplantation, and Comprehensive Cancer Center Freiburg, for their exceptional support of our APN/medical program for MM patients.

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Naegele, M., Kirsch, M., Ihorst, G. et al. Symptom experience of multiple myeloma (syMMex) patients treated with autologous stem cell transplantation following high-dose melphalan: a descriptive longitudinal study. Support Care Cancer 26, 833–841 (2018). https://doi.org/10.1007/s00520-017-3897-z

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  • DOI: https://doi.org/10.1007/s00520-017-3897-z

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