Advertisement
Original article| Volume 45, 102418, October 2020

Functioning Profiles of Young People with MS in Inpatient Rehabilitation: Data from the National Rehabilitation Reporting System in Canada

      Highlights

      • Younger people (16 to 25 years) admitted to rehabilitation with a more severe disability profile
      • Younger people were more likely to make improvements during rehabilitation
      • Accessing existing sources of data is a useful method for filling in gaps about outcomes for rare diseases.

      ABSTRACT

      Background

      Recent evidence has suggested an existence of a MS prodome, indicating that symptoms of neurodegeneration were present before the first clinical event. These early signs of MS are usually not recognized as a symptom of MS and some young adults with MS are very likely to have had these symptoms in their childhood or adolescence. It is thus of interest to examine the differences in disability profiles of young people with MS. This study focused on young people with MS with severe enough disability as to need rehabilitation services. The most likely reason for this need is poor recovery from a relapse.

      Objectives

      The purpose of the study is to characterize and compare the functional profiles (as reflected by Functional Independence Measure scores) of people with MS admitted to in-patient rehabilitation in Canada across two age groups (younger than 25 and 26 to 35 years old) with specific aims to estimate the extent to which these profiles change over time; and to identify the proportions of people who made a reliable change.

      Methods

      Data from the National Rehabilitation Reporting System (NRS) in Canada was analyzed. The dataset contained information of 457 people with MS aged 16 to 35 who were admitted to inpatient rehabilitation. Scores on the Functional Independence Measure at admission and discharge were analyzed using latent class analysis. Change in FIM was estimated using reliable change index. Probability of making a reliable change across the different classes, age and sex was estimated using logistic regression.

      Results

      There were four functional classes at admission and three classes at discharge. The four functional classes at admission were: A). Minimal assistance/Supervision in walking, B). Assistance in Activities of Daily Living (ADL)/Mobility, C). Assistance/dependent in ADL/Mobility, and D). Dependent in ADL and mobility. At admission, 19.7% of patients belonged to the best class, but at discharge, 66.8% of people belonged to the best class, indicating that 45% of the patients improved. Across the two age groups, disability profiles differed at admission and discharge. People who are 25 years and younger were more likely to belong to the lower functioning profiles classes (Class C and D) compared to the older group who were more likely to belong to Class B and C, indicating that younger people were more impaired at admission. The probability of making reliable change was also different between the latent classes. People in the lowest two classes at admission, were more likely to make reliable change (OR=10.9, OR=7.2).

      Conclusions

      The results of this study suggest that younger people were admitted with a more severe disability profile when compared to a slightly older group but were more likely to make improvements during rehabilitation. The functional profiles in MS differed across sex and age, signaling a need to tailor rehabilitation interventions across the functional profiles, age and sex. Accessing existing sources of data is a useful method for filling in gaps about outcomes for populations with rare diseases.

      Keywords

      To read this article in full you will need to make a payment

      Purchase one-time access:

      Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
      One-time access price info
      • For academic or personal research use, select 'Academic and Personal'
      • For corporate R&D use, select 'Corporate R&D Professionals'

      Subscribe:

      Subscribe to Multiple Sclerosis and Related Disorders
      Already a print subscriber? Claim online access
      Already an online subscriber? Sign in
      Institutional Access: Sign in to ScienceDirect

      References

        • Antel J.
        Therapy in Multiple Sclerosis - Coming of Age.
        N Engl J Med. 2018; 379: 1085-1086
        • Azevedo CJ
        • Cen SY
        • Jaberzadeh A
        • Zheng L
        • Hauser SL
        • Pelletier D
        Contribution of normal aging to brain atrophy in MS.
        Neurol Neuroimmunol Neuroinflamm. 2019; 6
        • Beninato M
        • Gill-Body KM
        • Salles S
        • Stark PC
        • Black-Schaffer RM
        • Stein J
        Determination of the minimal clinically important difference in the FIM instrument in patients with stroke.
        Archives of physical medicine and rehabilitation. 2006; 87: 32-39
        • Bringfelt P-A
        • Hartelius L
        • Runmarker B
        Communication problems in multiple sclerosis: 9-year follow-up.
        International Journal of MS Care. 2006; 8: 130-140
        • Brock KA
        • Goldie PA
        • Greenwood KM
        Evaluating the effectiveness of stroke rehabilitation: choosing a discriminative measure.
        Arch Phys Med Rehabil. 2002; 83: 92-99
      1. Canadian Institute of Health Information. National Rehabilitation Reporting System Metadata 2020 [updated 2020. Available from: https://www.cihi.ca/en/national-rehabilitation-reporting-system-metadata.

        • Chahin S
        • Banwell B
        • Balcer L
        • Waldman A
        Vision, fatigue, and quality of life in pediatric multiple sclerosis and monophasic demyelinating diseases. Neurology Conference: 67th American Academy of Neurology Annual Meeting.
        AAN. 2015; 84
        • Cohen JA
        • Reingold SC
        • Polman CH
        • Wolinsky JS
        Disability outcome measures in multiple sclerosis clinical trials: current status and future prospects.
        Lancet Neurol. 2012; 11: 467-476
        • Coster WJ
        • Haley SM
        • Jette AM
        Measuring patient-reported outcomes after discharge from inpatient rehabilitation settings.
        J Rehabil Med. 2006; 38: 237-242
        • Estrada E
        • Ferrer E
        • Pardo A
        Statistics for Evaluating Pre-post Change: Relation Between Change in the Distribution Center and Change in the Individual Scores.
        Frontiers in psychology. 2019; 9: 2696
        • Fay AJ
        • Mowry EM
        • Strober J
        • Waubant E
        Relapse severity and recovery in early pediatric multiple sclerosis.
        Mult Scler. 2012; 18: 1008-1012
        • Ferrer R
        • Pardo A
        Clinically meaningful change: False positives in the estimation of individual change.
        Psychological assessment. 2014; 26: 370
        • Golden LC
        • Voskuhl R.
        The importance of studying sex differences in disease: The example of multiple sclerosis.
        J Neurosci Res. 2017; 95: 633-643
        • Huppke B
        • Ellenberger D
        • Rosewich H
        • Friede T
        • Gartner J
        • Huppke P
        Clinical presentation of pediatric multiple sclerosis before puberty.
        Eur J Neurol. 2014; 21: 441-446
        • Lanza ST
        • Rhoades BL
        Latent class analysis: an alternative perspective on subgroup analysis in prevention and treatment.
        Prevention science: the official journal of the Society for Prevention Research. 2013; 14: 157-168
        • Lanza ST
        • Collins LM
        • Lemmon DR
        • Schafer JL
        PROC LCA: A SAS Procedure for Latent Class Analysis.
        Structural equation modeling: a multidisciplinary journal. 2007; 14: 671-694
        • Lanza ST
        • Dziak JJ
        • Huang L
        • Xu S
        • Collins L
        Proc LCA & Proc LTA users’ guide (Version 1.3. 2). Penn State: University Park.
        The Methodology Center. 2011;
        • LaRocca NG
        • Hudson LD
        • Rudick R
        • Amtmann D
        • Balcer L
        • Benedict R
        • et al.
        The MSOAC approach to developing performance outcomes to measure and monitor multiple sclerosis disability.
        Mult Scler. 2018; 24: 1469-1484
        • Latimer-Cheung AE
        • Martin Ginis KA
        • Hicks AL
        • Motl RW
        • Pilutti LA
        • Duggan M
        • et al.
        Development of Evidence-Informed Physical Activity Guidelines for Adults With Multiple Sclerosis.
        Archives of Physical Medicine and Rehabilitation. 2013; 94 (1829-36.e7)
        • Lavery AM
        • Verhey LH
        • Waldman AT
        Outcome measures in relapsing-remitting multiple sclerosis: capturing disability and disease progression in clinical trials.
        Mult Scler Int. 2014; 2014262350
        • Lee JY
        • Chitnis T
        Pediatric Multiple Sclerosis.
        Semin Neurol. 2016; 36: 148-153
        • Linacre JM
        • Heinemann AW
        • Wright BD
        • Granger CV
        • Hamilton BB
        The structure and stability of the functional independence measure.
        Archives of Physical Medicine and Rehabilitation. 1994; 75: 127-132
        • Marrie RA
        • Yu N
        • Wei Y
        • Elliott L
        • Blanchard J
        High rates of physician services utilization at least five years before multiple sclerosis diagnosis.
        Mult Scler. 2013; 19: 1113-1119
        • MSIF
        Atlas of MS: The Atlas of MS is the most extensive worldwide study of the disease [Website].
        MS International Foundation. 2013; ([updated 03-07-2017. Available from)
        • Narula S.
        New Perspectives in Pediatric Neurology-Multiple Sclerosis.
        Current Problems in Pediatric and Adolescent Health Care. 2016; 46: 62-69
        • O'Mahony J
        • Marrie RA
        • Laporte A
        • Yeh EA
        • Bar-Or A
        • Phan C
        • et al.
        Recovery From Central Nervous System Acute Demyelination in Children.
        Pediatrics. 2015; 136: e115-ee23
        • Ramachandran S
        • Strange RC
        • Jones PW
        • Kalra S
        • Nayak D
        • Hawkins CP
        Associations between onset age and disability in multiple sclerosis patients studied using MSSS and a progression model.
        Mult Scler Relat Disord. 2014; 3: 593-599
        • Ramagopalan SV
        • Dobson R
        • Meier UC
        • Giovannoni G
        Multiple sclerosis: risk factors, prodromes, and potential causal pathways.
        Lancet Neurol. 2010; 9: 727-739
        • Renauld S
        • Mohamed-Saïd L
        • Macoir J
        Language disorders in multiple sclerosis: A systematic review.
        Multiple Sclerosis and Related Disorders. 2016; 10: 103-111
      2. Schreiber J. Latent Class Analysis: An example for reporting results, 2016.

        • Stenager E.
        A global perspective on the burden of multiple sclerosis.
        Lancet Neurol. 2019; 18: 227-228
        • Tomassini V
        • Pozzilli C
        Sex hormones, brain damage and clinical course of Multiple Sclerosis.
        J Neurol Sci. 2009; 286: 35-39
        • Velozo CA
        • Magalhaes LC
        • Pan A-W
        • Leiter P
        Functional scale discrimination at admission and discharge: Rasch analysis of the Level of Rehabilitation Scale-III.
        Archives of Physical Medicine and Rehabilitation. 1995; 76: 705-712
        • von Wyl V
        • Décard BF
        • Benkert P
        • Lorscheider J
        • Hänni P
        • Lienert C
        • et al.
        Influence of age at disease onset on future relapses and disability progression in patients with multiple sclerosis on immunomodulatory treatment.
        Eur J Neurol. 2020;
        • Waldman A
        • Ness J
        • Pohl D
        • Simone IL
        • Anlar B
        • Amato MP
        • et al.
        Pediatric multiple sclerosis Clinical features and outcome.
        Neurology. 2016; 87: S74-S81
        • Wasserstein RL
        • Lazar NA.
        The ASA's statement on p-values: context, process, and purpose.
        The American Statistician. 2016; 70: 129-133
        • Wijnands JMA
        • Kingwell E
        • Zhu F
        • Zhao Y
        • Hogg T
        • Stadnyk K
        • et al.
        Health-care use before a first demyelinating event suggestive of a multiple sclerosis prodrome: a matched cohort study.
        Lancet Neurol. 2017; 16: 445-451