Top

Published in:

01-01-2020 | Multiple Sclerosis | Original Communication

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

Authors: Christian Philipp Kamm, L. Barin, C. Gobbi, C. Pot, P. Calabrese, A. Salmen, L. Achtnichts, J. Kesselring, M. A. Puhan, V. von Wyl, For the Swiss Multiple Sclerosis Registry (SMSR)

Published in: Journal of Neurology | Issue 1/2020

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

Ware JE Jr, Davies AR (1983) Behavioral consequences of consumer dissatisfaction with medical care. Eval Progr Plan 6:291–297CrossRef

Becker MH, Malman LA (1980) Strategies for enhancing patient compliance. J Community Health 6:113–135CrossRef

Marquis MS, Davies AR, Ware JE Jr (1983) Patient satisfaction and change in medical care provider: a longitudinal study. Med Care 21:821–829CrossRef

Miller RH, Williams PC, Napolitana G, Schmied J (1990) Malpractice: a case–control study of claimants. J Gen Intern Med 5:244–248CrossRef

Barry MJ, Edgman-Levitan S (2012) Shared decision making—pinnacle of patient-centered care. N Engl J Med 366:780–781CrossRef

Charles C, Gafni A, Whelan T (1997) Shared decision-making in the medical encounter: what does it mean? (or it takes at least two to tango). Soc Sci Med 44:681–692CrossRef

Kamm CP, Uitdehaag BM, Polman CH (2014) Multiple sclerosis: current knowledge and future outlook. Eur Neurol 72:132–141CrossRef

Solari A, Acquarone N, Pucci E et al (2007) Communicating the diagnosis of multiple sclerosis—a qualitative study. Mult Scler 13:763–769CrossRef

Janssens AC, van Doorn PA, de Boer JB, van der Meché FG, Passchier J, Hintzen R (2003) Impact of recently diagnosed multiple sclerosis on quality of life, anxiety, depression and distress of patients and partners. Acta Neurol Scand 108:389–395CrossRef

10.

Solari A (2014) Effective communication at the point of multiple sclerosis diagnosis. Mult Scler 20:397–402CrossRef

11.

Giordano A, Lugaresi A, Confalonieri P et al (2014) Implementation of the ‘Sapere Migliora’ information aid for newly diagnosed people with multiple sclerosis in routine clinical practice: a late-phase controlled trial. Mult Scler 20:1234–1243CrossRef

12.

Stacey D, Légaré F, Lewis K et al (2017) Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev 4:CD001431. https://doi.org/10.1002/14651858.CD001431.pub5.Review CrossRefPubMed

13.

Papathanasopoulos PG, Nikolakopoulou A, Scolding NJ (2005) Disclosing the diagnosis of multiple sclerosis. J Neurol 252:1307–1309CrossRef

14.

O'Connor P, Detsky AS, Tansey C, Kucharczyk W (1994) Effect of diagnostic testing for multiple sclerosis on patient health perceptions. Rochester-Toronto MRI Study Group. Arch Neurol 51:46–51CrossRef

15.

Solari A, Martinelli V, Trojano M et al (2010) An information aid for newly diagnosed multiple sclerosis patients improves disease knowledge and satisfaction with care. Mult Scler 16:1393–1405CrossRef

16.

Elwyn G, Laitner S, Coulter A, Walker E, Watson P, Thomson R (2010) Implementing shared decision making in the NHS. BMJ 341:c5146CrossRef

17.

Puhan MA, Steinemann N, Kamm CP et al (2018) A digitally facilitated citizen-science driven approach accelerates participant recruitment and increases study population diversity. Swiss Med Wkly 148:w14623PubMed

18.

Steinemann N, Kuhle J, Calabrese P et al (2018) The Swiss Multiple Sclerosis Registry (SMSR): study protocol of a participatory, nationwide registry to promote epidemiological and patient-centered MS research. BMC Neurol 18:111CrossRef

19.

Barin L, Salmen A, Disanto G et al (2018) The disease burden of Multiple Sclerosis from the individual and population perspective: which symptoms matter most? Mult Scler Relat Disord 25:112–121CrossRef

20.

R Core Team L (2017) R: a language and environment for statistical computing. R Foundation for Statistical Computing, Vienna. https://www.r-project.org/

21.

Barin L, Kamm CP, Salmen A et al (2019) How do patients enter the healthcare system after the first onset of multiple sclerosis symptoms? The influence of setting and physician specialty on speed of diagnosis. Mult Scler. https://doi.org/10.1177/1352458518823955(published online) CrossRefPubMed

22.

Kaufmann M, Kuhle J, Puhan MA et al (2018) Factors associated with time from first-symptoms to diagnosis and treatment initiation of Multiple Sclerosis in Switzerland. Mult Scler J Exp Transl Clin 4:2055217318814562. https://doi.org/10.1177/2055217318814562(eCollection 2018 Oct-Dec) CrossRefPubMedPubMedCentral

23.

Ben-Zacharia A, Adamson M, Boyd A et al (2018) Impact of shared decision making on disease-modifying drug adherence in multiple sclerosis. Int J MS Care 20:287–297CrossRef

24.

Brown H, Gabriele S, White J (2018) Physician and patient treatment decision-making in relapsing-remitting multiple sclerosis in Europe and the USA. Neurodegener Dis Manag 8:371–376CrossRef

25.

Kessels RP (2003) Patients' memory for medical information. J R Soc Med 96:219–222PubMedPubMedCentral

26.

Sherlock A, Brownie S (2014) Patients' recollection and understanding of informed consent: a literature review. ANZ J Surg 84:207–210CrossRef

27.

Hauser SL, Bar-Or A, Comi G et al (2017) Ocrelizumab versus interferon beta-1a in relapsing multiple sclerosis. N Engl J Med 376:221–234CrossRef

28.

Montalban X, Hauser SL, Kappos L et al (2017) Ocrelizumab versus placebo in primary progressive multiple sclerosis. N Engl J Med 376:209–220CrossRef

29.

Gold R, Kappos L, Arnold DL et al (2012) Placebo-controlled phase 3 study of oral BG-12 for relapsing multiple sclerosis. N Engl J Med 367:1098–1107 (Erratum in: N Engl J Med 367: 2362) CrossRef

Title: Factors influencing patient satisfaction with the first diagnostic consultation in multiple sclerosis: a Swiss Multiple Sclerosis Registry (SMSR) study
Authors: Christian Philipp Kamm
L. Barin
C. Gobbi
C. Pot
P. Calabrese
A. Salmen
L. Achtnichts
J. Kesselring
M. A. Puhan
V. von Wyl
For the Swiss Multiple Sclerosis Registry (SMSR)
Publication date: 01-01-2020
Publisher: Springer Berlin Heidelberg
Keyword: Multiple Sclerosis
Published in: Journal of Neurology / Issue 1/2020
Print ISSN: 0340-5354
Electronic ISSN: 1432-1459
DOI: https://doi.org/10.1007/s00415-019-09563-y

Keynote webinar | Spotlight on medication adherence

Springer Medicine

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

Abstract

Background

Objective

Methods

Results

Conclusions

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Abstract

Background

Objective

Methods

Results

Conclusions

Please log in to get access to this content

Other articles of this Issue 1/2020

Risk factors for lymphopenia in patients with relapsing–remitting multiple sclerosis treated with dimethyl fumarate

Apathy as a behavioural marker of cognitive impairment in Parkinson’s disease: a longitudinal analysis

Correction to: Longitudinal multi-modal muscle-based biomarker assessment in motor neuron disease

Clinical and MRI efficacy of sc IFN β-1a tiw in patients with relapsing MS appearing to transition to secondary progressive MS: post hoc analyses of PRISMS and SPECTRIMS

Increased neural connectivity between the hypothalamus and cortical resting-state functional networks in chronic migraine

Risks associated with oral deferiprone in the treatment of infratentorial superficial siderosis