Highlights
- •Depending on the disease course, quality of life is affected by different symptoms.
- •For RRMS, gait and balance problems, and fatigue affect most quality of life.
- •For progressive MS, spasticity and paralysis affect most quality of life.
- •When measuring with a visual analogue scale, different symptoms gain importance.
Abstract
Background
MS symptoms affect many functional domains. Knowing the specific impact of symptoms
on health-related quality of life (HRQoL) is vital for successful disease and symptom
management in MS. We aimed at investigating how specific MS symptoms contribute to
the disease burden in individuals and from a population perspective.
Methods
We included 855 Swiss Multiple Sclerosis Registry participants with a relapsing-remitting
form (RRMS) or a progressive form (PMS). HRQoL was measured with the EuroQol 5-Dimension
EQ-5D-index and EQ-Visual Analogue Scale (EQ-VAS) on 0–100% scales. Their associations
with 20 symptoms, socio-demographic and clinical information were explored in median
regression models, stratified by RRMS and PMS.
Results
We included 611 participants with RRMS and 244 with PMS. In RRMS, gait (−6.5%) and
balance problems (−5.1%) had the largest EQ-5D-index reductions, and were also important
at the population level (frequencies 45% and 52%). Fatigue, depression, and spasticity
(frequencies 74.1%, 31%, 38%) also contributed to the population disease burden. In
PMS, spasticity, paralysis, and bowel problems had the largest impact on EQ-5D-index,
both at the individual and population levels. The largest impact on EQ-VAS at population
level was associated in RRMS with balance problems, depression, dizziness, and spasticity,
while in PMS with weakness, pain, and paralysis.
Conclusions
While HRQoL at population level is most affected by balance problems, spasticity,
and depression in RRMS, the biggest HRQoL losses in PMS are caused by spasticity,
paralysis, weakness, and pain. Many symptoms with the largest effects in individuals
substantially contribute to the population disease burden.
Key-words
Abbreviations:
AIC (Aikake's Information Criterion), CIS (Clinically Isolated Syndrome), DMT (Disease-modifying Therapy), EDSS (Expanded Disability Status Scale), EQ-5D-5L (European Quality of Life 5-Dimension 5 Level version), EQ-5D-index (European Quality of Life 5-Dimension Index), EQ-VAS (European Quality of Life Visual Analogue Scale), EQ-VAS (European Quality of Life Visual Analogue Scale), EQ-VAS (European Quality of Life Visual Analogue Scale), HRQoL (Health-related quality of life), MICE (Multivariate Imputation by Chained Equations), RRMS (Relapsing remitting multiple sclerosis), PwMS (Persons with multiple sclerosis), PMS (Progressive multiple sclerosis), SMSR (Swiss Multiple Sclerosis Registry)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 accessOne-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 DisordersAlready a print subscriber? Claim online access
Already an online subscriber? Sign in
Register: Create an account
Institutional Access: Sign in to ScienceDirect
References
- Correlation between spasticity and quality of life in patients with multiple sclerosis : the CANDLE study.Int. J. Neurosci. 2013; 123: 850-858
- Health-related quality of life in secondary progressive multiple sclerosis.Mult. Scler. 2007; 13: 386-392
- Health-related quality of life and its relationship to cognitive and emotional functioning in multiple sclerosis patients.Eur. J. Neurol. 2002; 9: 497-502
- Thalamic deep brain stimulation for the treatment of tremor due to multiple sclerosis: a prospective study of tremor and quality of life.J. Neurosurg. 2002; 97: 815-820
- Factors associated with health-related quality of life among older people with multiple sclerosis.Int. J. MS Care. 2014; 16: 10-19
- New insights into the burden and costs of multiple sclerosis in Europe : Results for Switzerland.Mult. Scler. J. 2017; 23: 192-203
- Burden of multiple sclerosis on direct, indirect costs and quality of life: national US estimates.Mult. Scler. Relat. Disord. 2014; 3
- Depression is the main determinant of quality of life in multiple sclerosis: a classification-regression (CART) study.Disabil. Rehabil. 2006; 28: 307-314
- “It's just horrible”: a qualitative study of patients’ and carers’ experiences of bowel dysfunction in multiple sclerosis.J. Neurol. 2017; 264: 1354-1361
- The French version of the multiple sclerosis questionnaire for physiotherapist (MSQPT), a reliable and valid method for the evaluation of the treatment of persons with multiple sclerosis.Ann. Phys. Rehabil. Med. 2015; 58S: e113
- Patient characteristics and determinants of quality of life in an international population with multiple sclerosis: assessment using the MusiQoL and SF-36 questionnaires.Mult. Scler. J. 2011; 17: 1238-1249
- EuroQol–a new facility for the measurement of health-related quality of life.Health Policy. 1990; 16: 199-208
- Development and preliminary testing of the new five-level version of EQ-5D (EQ-5D-5L).Qual. Life Res. 2011; 20: 1727-1736
- Factors associated with health-related quality of life in multiple sclerosis.Can. J. Neurol. Sci. 2007; 34: 160-166
- Development and evaluation of a measure of patient-reported symptoms of Blepharitis.Health Qual. Life Outcomes. 2018; 16
- Quality of life in patients with multiple sclerosis: the impact of fatigue and depression.J. Neurol. Sci. 2002; 205: 51-58
- Lifestyle, medication and socio-demographic determinants of mental and physical health-related quality of life in people with multiple sclerosis.BMC Neurol. 2016; 16: 235
- The burden of multiple sclerosis 2015 : methods of data collection, assessment and analysis of costs, quality of life and symptoms.Mult. Scler. J. 2017; 23: 4-16
- Factors influencing quality of life in multiple sclerosis patients: disability, depressive mood, fatigue and sleep quality.Acta Neurol. Scand. 2004; 110: 6-13
- Substantial burden of dizziness in multiple sclerosis.Mult. Scler. Relat. Disord. 2013; 2: 21-28
- Using the EuroQol EQ-5D in Swiss cancer patients, which value set should be applied?.Pharmacoeconomics. 2014; 32: 591-599
- Factors that predict health-related quality of life in patients with relapsing-remitting multiple sclerosis.Mult. Scler. 2003; 9: 1-5
- Ocrelizumab versus Placebo in primary progressive multiple sclerosis.N. Engl. J. Med. 2017; 376: 209-220
- Physical activity and quality of life in multiple sclerosis: intermediary role of disability, fatigue, mood, pain, self-efficacy and social support.Psychol. Heal. Med. 2009; 14: 111-124
- Development of an 18-item measure of symptom burden in patients with glaucoma from the Collaborative Initial Glaucoma Treatment Study's symptom and health problem checklist.JAMA Ophthalmol. 2018; 135: 1345-1351
- The effect of functional limitations and fatigue on the quality of life in people with multiple sclerosis.Arq. Neuropsiquiatr. 2009; 67: 812-817
- General population reference values for the French version of the EuroQol EQ-5D health utility instrument.Value Heal. 2010; 13: 631-635
- Swiss Multiple Sclerosis Registry (SMSR).Swiss Med. Wkly. 2018; 148: w14623https://doi.org/10.4414/smw.2018.14623
- R: A Language and Environment for Statistical Computing.R Foundation for Statistical Computing, Vienna, Austria2017 (URL)
- Physical factors influencing quality of life in multiple sclerosis: literature review.Mult. Scler. J. 2013; 19: 289
- Response shift in self-rated health after serious health events in old age.Soc. Sci. Med. 2017; 19: 85-93
- Costs and quality of life in multiple sclerosis patients with spasticity.Acta Neurol. Scand. 2014; 129: 13-20
- Patient-reported questionnaires in MS rehabilitation: responsiveness and minimal important difference of the multiple sclerosis questionnaire for physiotherapists (MSQPT).BMC Neurol. 2017; 17: 1-14
- A health-related quality of life measure for multiple sclerosis.Qual. Life Res. 1995; 4: 187-206
- Treatment satisfaction and bothersome bladder, bowel, sexual symptoms in multiple sclerosis.Mult. Scler. Relat. Disord. 2018; 20: 16-21
Article info
Publication history
Published online: July 21, 2018
Accepted:
July 8,
2018
Received in revised form:
June 22,
2018
Received:
May 2,
2018
Identification
Copyright
© 2018 Elsevier B.V. All rights reserved.
