Literature DB >> 23574800

Achieving valid patient-reported outcomes measurement: a lesson from fatigue in multiple sclerosis.

Jeremy Hobart1, Stefan Cano, Rachel Baron, Alan Thompson, Steven Schwid, John Zajicek, David Andrich.   

Abstract

BACKGROUND: The increasing influence of patient-reported outcome (PRO) measurement instruments indicates their scrutiny has never been more crucial. Above all, PRO instruments should be valid: shown to assess what they purport to assess.
OBJECTIVES: To evaluate a widely used fatigue PRO instrument, highlight key issues in understanding PRO instrument validity, demonstrate limitations of those approaches and justify notable changes in the validation process.
METHODS: A two-phase evaluation of the 40-item Fatigue Impact scale (FIS): a qualitative evaluation of content and face validity using expert opinion (n=30) and a modified Delphi technique; a quantitative psychometric evaluation of internal and external construct validity of data from 333 people with multiple sclerosis using traditional and modern methods.
RESULTS: Qualitative evaluation did not support content or face validity of the FIS. Expert opinion agreed with the subscale placement of 23 items (58%), and classified all 40 items as being non-specific to fatigue impact. Nevertheless, standard quantitative psychometric evaluations implied, largely, FIS subscales were reliable and valid.
CONCLUSIONS: Standard quantitative 'psychometric' evaluations of PRO instrument validity can be misleading. Evaluation of existing PRO instruments requires both qualitative and statistical methods. Development of new PRO instruments requires stronger conceptual underpinning, clearer definitions of the substantive variables for measurement and hypothesis-testing experimental designs.

Entities:  

Keywords:  Patient-reported outcome measurement instruments; Rasch measurement theory; fatigue; multiple sclerosis; psychometric methods; rating scales

Mesh:

Year:  2013        PMID: 23574800     DOI: 10.1177/1352458513483378

Source DB:  PubMed          Journal:  Mult Scler        ISSN: 1352-4585            Impact factor:   6.312


  8 in total

1.  Conceptualizing and prioritizing clinical trial outcomes from the perspectives of people with Parkinson's disease versus health care professionals: a concept mapping study.

Authors:  Catharina Sjödahl Hammarlund; Maria H Nilsson; Markus Idvall; Scott R Rosas; Peter Hagell
Journal:  Qual Life Res       Date:  2014-01-04       Impact factor: 4.147

2.  Patient-reported outcome measures in MS: Do development processes and patient involvement support valid quantification of clinically important variables?

Authors:  Trishna Bharadia; Jo Vandercappellen; Tanuja Chitnis; Piet Eelen; Birgit Bauer; Giampaolo Brichetto; Andrew Lloyd; Hollie Schmidt; Miriam King; Jennifer Fitzgerald; Thomas Hach; Jeremy Hobart
Journal:  Mult Scler J Exp Transl Clin       Date:  2022-06-22

3.  Real-World Evidence for Favourable Quality-of-Life Outcomes in Hungarian Patients with Relapsing-Remitting Multiple Sclerosis Treated for Two Years with Oral Teriflunomide: Results of the Teri-REAL Study.

Authors:  Krisztina Bencsik; Enikő Dobos; Zita Jobbágy; Adrienne Jóri Birkás; Krisztina Kovács; Mária Sátori; Gyula Lencsés; Gabor Bartok; Erika Losonczi; László Vécsei
Journal:  Pharmaceuticals (Basel)       Date:  2022-05-13

4.  Clinical Assessment of Fatigability in Multiple Sclerosis: A Shift from Perception to Performance.

Authors:  Bryant A Seamon; Michael O Harris-Love
Journal:  Front Neurol       Date:  2016-11-07       Impact factor: 4.003

Review 5.  Measuring upper limb function in MS: Which existing patient reported outcomes are fit for purpose?

Authors:  James Close; Kathryn Baines; Laurie Burke; Jeremy Hobart
Journal:  eNeurologicalSci       Date:  2020-03-16

6.  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

7.  The Patient Experience of Fatigue in Systemic Lupus Erythematosus: A Conceptual Model.

Authors:  Sophie Cleanthous; Sara Strzok; Birgit Haier; Stefan Cano; Thomas Morel
Journal:  Rheumatol Ther       Date:  2021-10-08

8.  The FATIGUE-PRO: a new patient-reported outcome instrument to quantify fatigue in patients affected by systemic lupus erythematosus.

Authors:  Thomas Morel; Stefan Cano; Susan J Bartlett; Caroline Gordon; Birgit Haier; Antoine Regnault; Matthias Schneider; Christian Stach; Sophie Cleanthous
Journal:  Rheumatology (Oxford)       Date:  2022-08-03       Impact factor: 7.046

  8 in total

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