Using Patient-Reported Outcomes To Improve the Care of People With Mul
Using Patient-Reported Outcomes To Improve the Care of People With Multiple Sclerosis: A Randomized Trial
What it found
A paper reports the results; we have not read it yet. See Papers below.
What was tested
Treatment tested
- Intensive Use of Patient Reported Outcome Measures and Open PROM Availability to Treating Neurologist
Compared with
- Conservative Use of Patient Reported Outcome Measures and Blinded PROM Availability to Treating Neurologist
What it measured
Main measures
Difference in Change in Depression score in the Hospital Anxiety and Depression Scale (HADS-D) scores
12 months
Mood and sleepDifference in Change in Anxiety score in the Hospital Anxiety and Depression Scale (HADS-A) scores
12 months
Mood and sleep
Other measures (6)
Difference in Change in the Euro Quality of Life Measurement (EQ5D)
12 months
Walking and mobilityPainMood and sleepQuality of life (reported by participants)Difference in Change in the Modified Fatigue Impact Scale (MFIS) score
12 months
Thinking and memoryFatigueScores on Qualitative Consultant Satisfaction Questionnaire (CSQ)
12 months
Quality of life (reported by participants)The Patient Determined Disease Steps (PDDS) Stability of Score
12 months
Disability progressionQuality of life (reported by participants)Difference in Change in the Patient Health Questionnaire-9 (PHQ-9)
12 months
Mood and sleepDifference in change in the CollaboRATE shared decision-making survey
12 months
Quality of life (reported by participants)
Who could take part
Relapsing and progressive · 18 and over
Show the full criteria
Inclusion criteria
* Persons with multiple sclerosis [relapsing-remitting, secondary progressive, primary progressive, etc.] being managed by a Northern or Central Alberta-based neurologist. * Able/willing to complete informed consent and the questionnaires. * Able to use a computer. * Greater or equal to the age of 18 years old. * English-speaking.
Exclusion criteria
* Unwilling/unable to provide consent. * Unwilling/unable to complete the questionnaires. * Does not speak English. * Under the age of 18. * Has a central nervous system inflammatory disorder other than MS. * PwMS not being managed by the participating neurologist (a neurologist practicing in Northern and Central Alberta).
As registered. Criteria can change, so ask the trial team or your neurologist.
About this trial
In the sponsor's words
The proposed trial is a prospective, randomized (1:1) trial plan examining whether more routine and frequent measurement of Patient Related Outcome Measures (PROMs) in the care of patients with MS improves patient depression and anxiety outcomes in addition to patient care satisfaction. The investigators plan to randomize people with MS (PwMS) to an intensive arm of filling out patient reported outcome measures every 6 months, with communication to their neurologist about their scores, versus a control arm, where participants fill out patient reported outcomes less frequently (annually) and their scores are not released to their MS Clinic/Neurologist. The primary outcome is to see if more frequent PROM completion leads to less depression and anxiety for people with MS. The investigators also plan to measure their satisfaction of care with their MS Clinic/neurologist and satisfaction in a shared decision-making process. Whether this improves care in patients with MS is currently unknown, and the investigators want to explore this with the current study. The investigators plan to randomize people with MS (PwMS) to an intensive arm of filling out patient reported outcome measures every 6 months, with communication to their neurologist about their scores, versus a control arm, where participants fill out patient reported outcomes less frequently (annually) and their scores are not released to their MS Clinic/Neurologist. The primary outcome is to see if more frequent PROM completion leads to less anxiety for people with MS. The investigators also plan to measure their satisfaction of care with their MS Clinic/neurologist and satisfaction in a shared decision-making process.
Papers
Results
Evaluating the impact of systematic reporting of patient-reported outcome measures on depression and anxiety levels in people with multiple sclerosis: a randomized controlled trial.Mult Scler Relat Disord · 2025
Results
Evaluating the impact of patient-reported outcome measures on depression and anxiety levels in people with multiple sclerosis: a study protocol for a randomized controlled trial.BMC Neurol · 2023
Results
Chu NY, Jamali A, Al Hamarneh YN, Watson KE, Tsuyuki RT, Smyth PS. Provider Experiences With Systematically Administered Patient-Reported Outcome Measures in Multiple Sclerosis: A Qualitative Sub-Study. Neurol Clin Pract. 2025 Aug;15(4):e200486. doi: 10.1212/CPJ.0000000000200486. Epub 2025 Jul 11.Background
Baker R. Development of a questionnaire to assess patients' satisfaction with consultations in general practice. Br J Gen Pract. 1990 Dec;40(341):487-90.Background
Fiest KM, Walker JR, Bernstein CN, Graff LA, Zarychanski R, Abou-Setta AM, Patten SB, Sareen J, Bolton JM, Marriott JJ, Fisk JD, Singer A, Marrie RA; CIHR Team Defining the Burden and Managing the Effects of Psychiatric Comorbidity in Chronic Immunoinflammatory Disease. Systematic review and meta-analysis of interventions for depression and anxiety in persons with multiple sclerosis. Mult Scler ReBackground
Fisk JD, Pontefract A, Ritvo PG, Archibald CJ, Murray TJ. The impact of fatigue on patients with multiple sclerosis. Can J Neurol Sci. 1994 Feb;21(1):9-14.Background
Forbes A, While A, Mathes L, Griffiths P. Health problems and health-related quality of life in people with multiple sclerosis. Clin Rehabil. 2006 Jan;20(1):67-78. doi: 10.1191/0269215506cr880oa.Background
Honarmand K, Feinstein A. Validation of the Hospital Anxiety and Depression Scale for use with multiple sclerosis patients. Mult Scler. 2009 Dec;15(12):1518-24. doi: 10.1177/1352458509347150. Epub 2009 Nov 13.Background
Jones KH, Ford DV, Jones PA, John A, Middleton RM, Lockhart-Jones H, Osborne LA, Noble JG. A large-scale study of anxiety and depression in people with Multiple Sclerosis: a survey via the web portal of the UK MS Register. PLoS One. 2012;7(7):e41910. doi: 10.1371/journal.pone.0041910. Epub 2012 Jul 30.Background
Kuspinar A, Mayo NE. A review of the psychometric properties of generic utility measures in multiple sclerosis. Pharmacoeconomics. 2014 Aug;32(8):759-73. doi: 10.1007/s40273-014-0167-5.
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History
Started
Nov 2021
Main results due
Apr 2024
Finished
Apr 2024