Time from first symptom onset to the final diagnosis of multiple myeloma (MM) – possible risks and future solutions: retrospective and prospective ‘Deutsche Studiengruppe MM’ (DSMM) and ‘European Myeloma Network’ (EMN) analysis^*

Abstract

Multiple myeloma (MM) often presents with unspecific symptoms and is challenging to diagnose. We performed this DSMM/EMN-analysis via test-(retro-) and validation (prospective) study to determine the time interval from the onset of first symptoms to the diagnosis of MM. The retrospective and prospective analyses were performed in 101 and 176 patients, respectively. The median time from first symptoms to the MM diagnosis in both cohorts was 4 and 6 months, respectively. Frequencies of MM-related pathologic bone fractures, renal, and infectious complications at diagnosis occurred in 41%, 35%, and 16% of patients, respectively. Our MM-questionnaire determined that 39% of patients were dissatisfied with the diagnostic process. PFS and OS proved insignificantly different with shorter (≤6) and longer (>6 months) latency periods. In conclusion, our in depth studies demonstrate that delays in diagnosis do not decrease PFS or OS, but induce MM-related complications and influence patients’ satisfaction with their medical care.

Keywords:

• Multiple myeloma
• time to diagnosis
• complication avoidance
• health services research
• early diagnosis

Acknowledgements

The authors thank the support and advice of DSMM; GMMG, EMN, and IMWG experts at meetings and presentation of their data and very fruitful discussion. The authors specifically thank Dr. Johannes Waldschmidt (currently Dana Farber Cancer Center, Boston, USA), Prof. Delforge (Belgium), Prof. Einsele (Würzburg), Prof. Goldschmidt (Heidelberg), and MM self-advocacy groups (specifically MM Selbsthilfegruppe Südwest and München, Prof. Klaus Stosseck, Bärbel Schäfer, Iris Hander, and Leukämie&Lymphomhilfe Rhein Main, Anita and Thomas Waldmann) who encouraged and supported this test- and validation analysis. The authors are especially indebt to all MM patients who gladly and vividly engaged in this study and the interdisciplinary MM tumor board for its utmost support, specifically Dr. Henning Schäfer, Dr. Jakob Neubauer, PD Dr. Konrad Aumann, Dr. Ulrich Salzer, Prof. Dr. Reinhard Voll, Dr. Milena Pantic, Sandra Woerner, Dagmar Wider, Dr. Cornelius Miething, Dr. Christine Greil, Dr. Michael Rassner, Dr. Chrissoula Kiote-Schmidt.

This article is dedicated to Prof. Dr. Karlheinz Engelhardt (†22.4.2011) with sincere gratitude for his inspiring ideas, for his thriving support for my and many other medical careers and for his stimulating and never-ending interest in medicine, science, ethics, artful reading and writing, and music. He is an ever admired example of a highly dedicated and talented physician who always thrived for patient-centered medicine, to improve patients’ prognosis, medical care, and our patients’ quality of life. He would have loved to read this article, induce discussions on its results and seek for follow-up questions in subsequent analyses.

Disclosure statement

No potential conflict of interest was reported by the authors.

Notes

* The results were presented in part at the ‘American Society of Hematology’ (ASH) meeting in 2017, the International Myeloma Workshop and the ‘German, Austrian, and Swiss annual Hematology & Oncology meeting’ (DGHO).

Additional information

Funding

This work was supported by an educational grant from Janssen [DRKS: 00008551]. Janssen (to ME + RW), with special thanks to thorough discussions with Luitgard Rosenthal and Dr. Christian Englisch.