Factors influencing patient satisfaction with the first diagnostic consultation in multiple sclerosis: a Swiss Multiple Sclerosis Registry (SMSR) study

Abstract

Background

Patient satisfaction is predictive of adherence, malpractice litigation and doctor-switching.

Objective

To investigate which factors of the first diagnostic consultation (FDC) influence patient satisfaction and which topics persons with multiple sclerosis (PwMS) thought were missing.

Methods

Using retrospective patient-reported data of the Swiss Multiple Sclerosis Registry from PwMS with relapsing disease onset, we fitted ordered logistic regression models on satisfaction with FDC, with socio-demographic and FDC features as explanatory factors.

Results

386 PwMS diagnosed after 1995 were included. Good satisfaction with the FDC was associated with a conversation more than 20 min [multivariable odds ratio, 95% confidence interval 3.9 (2.42; 6.27)], covering many topics [1.35 (1.19; 1.54) per additional topic], the presence of a significant others [1.74 (1.03; 2.94) ], and shared decision making [3.39 (1.74; 6.59)]. Not receiving a specific diagnosis was main driver for low satisfaction [0.29 (0.15; 0.55)]. Main missing topics concerned long-term consequences (reported by 6.7%), psychological aspects (6.2%) and how to obtain support and further information (5.2%).

Conclusions

A conversation of more than 20 min covering many MS relevant topics, a clear communication of the diagnosis, the presence of a close relative or significant other, as well as shared decision making enhanced patient satisfaction with the FDC. ClinicalTrials.gov Identifier: NCT02980640

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Acknowledgements

The authors wish to thank the Swiss Multiple Sclerosis Society for funding the Swiss MS Registry. Moreover, we thank the study participants who not only contributed data but also were absolutely instrumental in all aspects of study design and conduct of the Swiss Multiple Sclerosis Registry. We further thank the members of the SMSR Data Center at the Epidemiology, Biostatistics and Prevention Institute of the University of Zurich. Members of the Swiss Multiple Sclerosis Registry are Bernd Anderseck, Pasquale Calabrese, Andrew Chan, Giulio Disanto, Britta Engelhardt, Claudio Gobbi, Roger Haussler, Christian P. Kamm, Susanne Kagi, Jurg Kesselring (President), Jens Kuhle (Chair of Clinical and Laboratory Research Committee), Roland Kurmann, Christoph Lotter, Kurt Luyckx, Doron Merkler, Patricia Monin, Stephanie Muller, Krassen Nedeltchev, Caroline Pot, Milo A. Puhan, Irene Rapold, Anke Salmen, Sven Schippling, Claude Vaney (Chair of Patient- and Population Research Committee), and Viktor von Wyl (Chair of IT and Data Committee).

Funding

This work was supported by the Swiss Multiple Sclerosis Society.

Author information

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Authors

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Contributions

All authors contributed to the study conception and design as well as data collection. Statistical analysis were performed by LB, VvW and CPK. The first draft of the manuscript was written by CPK, LB and VvW and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Christian Philipp Kamm.

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Conflicts of interest

CPK has received honoraria for lectures as well as research support from Biogen, Novartis, Almirall, Bayer Schweiz AG, Teva, Merck, Sanofi Genzyme, Roche, Celgene and the Swiss MS Society (SMSG). CG: The Employer Department of Neurology, Regional Hospital Lugano (EOC), Lugano, Switzerland receives financial support from Teva, Merck Serono, Biogen Idec, Bayer Schering, Genzyme, Roche and Novartis. The submitted work is not related to these agreements. CP has received travel support and participated to advisory board for Biogen Idec, Genzyme, Novartis and Roche. PC has received honoraria for speaking at scientific meetings, serving at scientific advisory boards and consulting activities from: Abbvie, Actelion, Almirall, Bayer-Schering, Biogen Idec, EISAI, Genzyme, Lundbeck, Merck Serono, Novartis, Pfizer, Teva, and Sanofi-Aventis; his research is also supported by the Swiss Multiple Sclerosis Society, the Swiss National Research Foundation and the SOFIA Foundation. AS received speaker honoraria and/or travel compensation for activities with Almirall Hermal GmbH, Biogen, Merck, Novartis, Roche, and Sanofi Genzyme; none related to this work. LA served on scientific advisory boards for Novartis Pharmaceuticals, Merck, Biogen, Sanofi Genzyme, Roche and Bayer; received funding for travel and/or speaker honoraria from Biogen, Sanofi Genzyme, Novartis, Merck Serono, Roche, Teva and the Swiss MS Society. LB, MP, JK, and VvW have nothing to disclose.

Ethical standards

The SMSR was approved by the Cantonal Ethics Committee Zurich (Study number PB-2016-00894) and has been performed in accordance with the ethical standards laid down in the 1964 Declaration of Helsinki and its later amendments, and every patient has signed an informed consent prior to study entry.

Additional information

Them members of For the Swiss Multiple Sclerosis Registry (SMSR) are listed in Acknowledgements.

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Kamm, C.P., Barin, L., Gobbi, C. et al. Factors influencing patient satisfaction with the first diagnostic consultation in multiple sclerosis: a Swiss Multiple Sclerosis Registry (SMSR) study. J Neurol 267, 153–161 (2020). https://doi.org/10.1007/s00415-019-09563-y

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Keywords

  • First diagnostic consultation
  • Multiple sclerosis
  • Registries
  • Patient satisfaction
  • Diagnosis communication
  • Shared decision making