ECTRIMS eLearning

Patient satisfaction with the first talk about diagnosis and its impact on treatment decisions: a Swiss multiple sclerosis Registry study
Author(s): ,
L. Barin
Affiliations:
University of Zurich, Institute of Epidemiology, Biostatistics and Prevention, Zurich
,
C.P. Kamm
Affiliations:
Department of Neurology, Inselspital; Neurology and Neurorehabilitation Centre, Luzerner Kantonsspital, Lucerne
,
M. Kaufmann
Affiliations:
University of Zurich, Institute of Epidemiology, Biostatistics and Prevention, Zurich
,
M. Lutz
Affiliations:
Swiss Multiple Sclerosis Society, Zurich
,
C. Pot
Affiliations:
Division of Neurology, University of Lausanne, Lausanne
,
S. Schippling
Affiliations:
Neuroimmunology and Multiple Sclerosis Research, Department of Neurology, University Hospital Zurich; Center for Neuroscience Zurich, ETH Zurich, Zurich
,
A. Salmen
Affiliations:
Department of Neurology, Inselspital
,
S. Mueller
Affiliations:
Department of Neurology, Cantonal Hospital St. Gallen, St. Gallen
,
P. Calabrese
Affiliations:
Division of Molecular and Cognitive Neuroscience
,
A. Chan
Affiliations:
Department of Neurology, Inselspital
,
V. von Wyl
Affiliations:
University of Zurich, Institute of Epidemiology, Biostatistics and Prevention, Zurich
Swiss Multiple Sclerosis Registry.
Swiss Multiple Sclerosis Registry.
Affiliations:
ECTRIMS Learn. Barin L. 10/10/18; 228180; P335
Laura Barin
Laura Barin
Contributions
Abstract

Abstract: P335

Type: Poster Sessions

Abstract Category: Clinical aspects of MS - Diagnosis and differential diagnosis

Introduction: Patient satisfaction with the first diagnostic consultation (FDC) might have an impact on treatment decision. Initiation of disease modifying treatment (DMT) in multiple sclerosis (MS) should be informed, shared with the patient, and consider all appropriate options.
Objectives: To investigate factors contributing to patient satisfaction with the FDC and to assess its association with DMT initiation.
Methods: Using retrospective patient-reported data of the Swiss MS Registry, we fitted ordered logistic regression models (outcomes: a. Satisfaction with FDC: 1(not at all, reference) to 5 (very satisfied); b. Start of DMT after FDC: no/yes), adjusted for period of diagnosis and other pre-specified confounders. Primary progressive MS was excluded.
Results: 421 persons with MS diagnosed after 1995 (clinically isolated syndrome (n=11), relapsing remitting (n=379) or secondary progressive MS (n=31) at diagnosis) were included. 54% of participants were satisfied with the FDC (levels 4-5), 24% were not satisfied (1-2), and 22% were neutral (3). For 18% the FDC lasted ≤10 min, for 42% 10-30 min, for 32% ≥30 min, others did not recall. 84% perceived the diagnosis as clear. The most covered topics were the nature of MS (67%) and DMT (72%). 59% were suggested ≥2 DMT options, 22% 1 option, and 19% no DMT option. Of all patients, 70% initiated DMT within 3 months, 7% after 3 months, and 23% did not start any.
In the multivariable regression on satisfaction with FDC, involvement in the DMT choice (odds ratio 16, [95% confidence interval 4-59] vs. no involvement), the number of topics covered (1.4 [1.2-1.7] per additional topic), clarity of the diagnosis (3.5 [1.5-8] vs. a perceived unclear diagnosis), and high socioeconomic status defined by highest work position (2.1 [1.1-4]), were associated with better satisfaction. Worse satisfaction was associated with an interval from contacting a doctor to the diagnosis exceeding 3 months (0.48 [0.27-0.85]). Satisfaction with the FDC (6 [2-19]), diagnosis after 2010 (8.6 [2.1-35.6]), and FDC longer than 30 min (4.9 [1.1-20.7]), were associated with DMT initiation. Males were less likely to start DMT (0.3 [0.1-0.7]).
Conclusions: Satisfaction with FDC could be crucial for increasing DMT initiation in the MS population. In order to achieve that, physicians should aim to minimize the diagnostic process length, dedicate ample time to the FDC, provide clear information about MS, and involve patients in treatment decision.
Disclosure: Funding: The SMSR is supported by the scientific advisory board of the Swiss MS Society.The Society had no role in study design, in the collection, analysis and interpretation of data, in the writing of the report, and in the decision to submit the article for publication.
Potential conflict of interest:
LB, MK, ML, VvW have nothing to disclose.
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).
CP has received travel support and participated to advisory board for Biogen Idec, Genzyme, Novartis and Roche.
SS is supported by the Swiss National Science Foundation, the Clinical Research Priority Program of the University of Zurich, the Myelin Repair Foundation and the Swiss Multiple Sclerosis Society; he has received research grants from Novartis andSanofiGenzyme and consultancy and speaker fees from Biogen, Merck Serono, Novartis, Roche, Sanofi Genzyme, and Teva.
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.
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.
SM received honoraria for travel, honoraria for lectures/consulting and/or grants for studies from Allmiral, Biogen, Celgene, Novartis, Teva, Merck-Serono, Genzyme, Roche and Bayer Schweiz AG
AC had compensation for activities (speaker, boards) with Actelion, Allmirall, Bayer, Biogen, Celgene, Genzyme, Merck, Novartis, Roche, Teva, all for university research funds. Research support from UCB, Genzyme.

Abstract: P335

Type: Poster Sessions

Abstract Category: Clinical aspects of MS - Diagnosis and differential diagnosis

Introduction: Patient satisfaction with the first diagnostic consultation (FDC) might have an impact on treatment decision. Initiation of disease modifying treatment (DMT) in multiple sclerosis (MS) should be informed, shared with the patient, and consider all appropriate options.
Objectives: To investigate factors contributing to patient satisfaction with the FDC and to assess its association with DMT initiation.
Methods: Using retrospective patient-reported data of the Swiss MS Registry, we fitted ordered logistic regression models (outcomes: a. Satisfaction with FDC: 1(not at all, reference) to 5 (very satisfied); b. Start of DMT after FDC: no/yes), adjusted for period of diagnosis and other pre-specified confounders. Primary progressive MS was excluded.
Results: 421 persons with MS diagnosed after 1995 (clinically isolated syndrome (n=11), relapsing remitting (n=379) or secondary progressive MS (n=31) at diagnosis) were included. 54% of participants were satisfied with the FDC (levels 4-5), 24% were not satisfied (1-2), and 22% were neutral (3). For 18% the FDC lasted ≤10 min, for 42% 10-30 min, for 32% ≥30 min, others did not recall. 84% perceived the diagnosis as clear. The most covered topics were the nature of MS (67%) and DMT (72%). 59% were suggested ≥2 DMT options, 22% 1 option, and 19% no DMT option. Of all patients, 70% initiated DMT within 3 months, 7% after 3 months, and 23% did not start any.
In the multivariable regression on satisfaction with FDC, involvement in the DMT choice (odds ratio 16, [95% confidence interval 4-59] vs. no involvement), the number of topics covered (1.4 [1.2-1.7] per additional topic), clarity of the diagnosis (3.5 [1.5-8] vs. a perceived unclear diagnosis), and high socioeconomic status defined by highest work position (2.1 [1.1-4]), were associated with better satisfaction. Worse satisfaction was associated with an interval from contacting a doctor to the diagnosis exceeding 3 months (0.48 [0.27-0.85]). Satisfaction with the FDC (6 [2-19]), diagnosis after 2010 (8.6 [2.1-35.6]), and FDC longer than 30 min (4.9 [1.1-20.7]), were associated with DMT initiation. Males were less likely to start DMT (0.3 [0.1-0.7]).
Conclusions: Satisfaction with FDC could be crucial for increasing DMT initiation in the MS population. In order to achieve that, physicians should aim to minimize the diagnostic process length, dedicate ample time to the FDC, provide clear information about MS, and involve patients in treatment decision.
Disclosure: Funding: The SMSR is supported by the scientific advisory board of the Swiss MS Society.The Society had no role in study design, in the collection, analysis and interpretation of data, in the writing of the report, and in the decision to submit the article for publication.
Potential conflict of interest:
LB, MK, ML, VvW have nothing to disclose.
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).
CP has received travel support and participated to advisory board for Biogen Idec, Genzyme, Novartis and Roche.
SS is supported by the Swiss National Science Foundation, the Clinical Research Priority Program of the University of Zurich, the Myelin Repair Foundation and the Swiss Multiple Sclerosis Society; he has received research grants from Novartis andSanofiGenzyme and consultancy and speaker fees from Biogen, Merck Serono, Novartis, Roche, Sanofi Genzyme, and Teva.
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.
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.
SM received honoraria for travel, honoraria for lectures/consulting and/or grants for studies from Allmiral, Biogen, Celgene, Novartis, Teva, Merck-Serono, Genzyme, Roche and Bayer Schweiz AG
AC had compensation for activities (speaker, boards) with Actelion, Allmirall, Bayer, Biogen, Celgene, Genzyme, Merck, Novartis, Roche, Teva, all for university research funds. Research support from UCB, Genzyme.

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