Literature DB >> 31154262

Review: Patient-reported outcomes in multiple sclerosis care.

Emanuele D'Amico1, Rocco Haase2, Tjalf Ziemssen3.   

Abstract

Patient-reported outcomes (PROs) are increasingly used in multiple sclerosis (MS) research and clinical practice for understanding the effects that the disease and its treatments have on patients' lives. PROs are captured directly from patients and include symptoms, function, health status, and health-related quality of life. No universal guidance on appropriateness of each applied tool exists. However, collecting clear and comprehensive outcome measures represents the first step of patient centered therapeutic management. The importance of PRO assessment is expected to continue to grow in the future. But in current MS reality, PROs are selected and used without a clear justification, and only few PROs are of adequate psychometric quality. There is a clear need for the development of high-quality; MS-specific PROs that assess the true concerns of patients and that evaluate the impact of both clinical and non-clinical interventions on a variety of outcomes. In this perspective review, we describe the importance of and methods for using PRO in MS by defining and identifying the used PROs in MS. Moreover, we will outline the challenges and key unanswered questions for routine use of PROs in MS discussing potential interventions to accelerate the integration of PROs in the clinical management of MS.
Copyright © 2019 Elsevier B.V. All rights reserved.

Entities:  

Keywords:  Multiple sclerosis; Patient reported outcome measures; Patient-Centered Care

Mesh:

Year:  2019        PMID: 31154262     DOI: 10.1016/j.msard.2019.05.019

Source DB:  PubMed          Journal:  Mult Scler Relat Disord        ISSN: 2211-0348            Impact factor:   4.339


  17 in total

1.  The 27-Item Multiple Sclerosis Quality of Life Questionnaire: A New Brief Measure Including Treatment Burden and Work Life.

Authors:  Helen Beckmann; Christoph Heesen; Matthias Augustin; Christine Blome
Journal:  Int J MS Care       Date:  2021-12-07

2.  OzEAN Study to Collect Real-World Evidence of Persistent Use, Effectiveness, and Safety of Ozanimod Over 5 Years in Patients With Relapsing-Remitting Multiple Sclerosis in Germany.

Authors:  Tjalf Ziemssen; Stephan Richter; Mathias Mäurer; Mathias Buttmann; Boris Kreusel; Anne-Maria Poehler; Maren Lampl; Ralf A Linker
Journal:  Front Neurol       Date:  2022-06-27       Impact factor: 4.086

Review 3.  Saving time and effort: Best practice for adapting existing patient-reported outcome measures in hepatology.

Authors:  Laith Alrubaiy; Hayley A Hutchings; Sarah E Hughes; Thomas Dobbs
Journal:  World J Hepatol       Date:  2022-05-27

4.  Treatment satisfaction in patients with relapsing-remitting multiple sclerosis initiated on teriflunomide in routine clinical practice: Australian observational data.

Authors:  Todd A Hardy; John Parratt; Heidi Beadnall; Stefan Blum; Richard Macdonell; Roy G Beran; Neil Shuey; Andrew Lee; William Carroll; Cameron Shaw; Richard Worrell; Jana Moody; Mamdouh Sedhom; Michael Barnett; Steve Vucic
Journal:  BMJ Neurol Open       Date:  2022-07-04

5.  Data Collection in Multiple Sclerosis: The MSDS Approach.

Authors:  Tjalf Ziemssen; Raimar Kern; Isabel Voigt; Rocco Haase
Journal:  Front Neurol       Date:  2020-06-16       Impact factor: 4.003

6.  Measuring outcomes that matter most to people with multiple sclerosis: the role of patient-reported outcomes.

Authors:  Giampaolo Brichetto; Paola Zaratin
Journal:  Curr Opin Neurol       Date:  2020-06       Impact factor: 5.710

Review 7.  Dimethyl Fumarate in the Treatment of Relapsing-Remitting Multiple Sclerosis: Patient Reported Outcomes and Perspectives.

Authors:  Osman Ozel; Caila B Vaughn; Svetlana P Eckert; Dejan Jakimovski; Alexis A Lizarraga; Bianca Weinstock-Guttman
Journal:  Patient Relat Outcome Meas       Date:  2019-12-11

8.  Assessing fatigue in multiple sclerosis: Psychometric properties of the five-item Modified Fatigue Impact Scale (MFIS-5).

Authors:  Virginia Meca-Lallana; María Brañas-Pampillón; Yolanda Higueras; Antonio Candeliere-Merlicco; Yolanda Aladro-Benito; Ofir Rodríguez-De la Fuente; Elisa Salas-Alonso; Jorge Maurino; Javier Ballesteros
Journal:  Mult Scler J Exp Transl Clin       Date:  2019-11-09

Review 9.  Digital Technology in Clinical Trials for Multiple Sclerosis: Systematic Review.

Authors:  Marcello De Angelis; Luigi Lavorgna; Antonio Carotenuto; Martina Petruzzo; Roberta Lanzillo; Vincenzo Brescia Morra; Marcello Moccia
Journal:  J Clin Med       Date:  2021-05-26       Impact factor: 4.241

10.  Psychometric Properties of the SymptoMScreen Questionnaire in a Mild Disability Population of Patients with Relapsing-Remitting Multiple Sclerosis: Quantifying the Patient's Perspective.

Authors:  José Meca-Lallana; Jorge Maurino; Miguel Ángel Hernández-Pérez; Ángel P Sempere; Luis Brieva; Elena García-Arcelay; María Terzaghi; Gustavo Saposnik; Javier Ballesteros
Journal:  Neurol Ther       Date:  2020-01-18
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