Elsevier

The Lancet Neurology

Volume 4, Issue 9, September 2005, Pages 556-566
The Lancet Neurology

Review
Quality of life and its assessment in multiple sclerosis: integrating physical and psychological components of wellbeing

https://doi.org/10.1016/S1474-4422(05)70166-6Get rights and content

Summary

Health-related quality of life (HRQoL) has been more intensively studied in multiple sclerosis (MS) than in any other neurological disorder. Traditional medical models of impairment and disability are an incomplete summary of disease burden. Quality of life can be thought of as the sum of all sources of satisfaction (including anticipated sources) minus all threats (including anticipated threats). Many psychosocial factors—including coping, mood, self-efficacy, and perceived support—influence the quality of life of patients with MS more than biological variables such as weakness or extent of MRI lesions. Neuropsychiatric complications such as cognitive impairment and fatigue are also important predictors, even in those patients in the early stages of the disease. We review generic and specific HRQoL measures to help clinicians choose the most appropriate therapies. Subjective (self-report) HRQoL measures may serve to alert clinicians to areas that would otherwise be overlooked. Studies of new interventions should include an assessment of HRQoL not just impairment or disability alone.

Introduction

Multiple sclerosis (MS) is one of the most common chronic neurological diseases in young adults, affecting about one in 1000 people. There are an estimated 1·1 million patients worldwide.1 In most cases, the disease is episodic with full remission separated by unpredictable relapses. With time, 80% of patients experience a transition towards persistent disability in the secondary progressive phase.2 Only one in five patients will either remain stable or avoid substantial disability during their lifetime. Even those patients with very early clinically isolated MS-related syndromes are likely to have disseminated lesions on brain MRI3 together with subtle neuropsychological deficits.4 MS is a disorder with early involvement of the brain and higher function, resulting in important consequences for living a full and independent life. As a neuropsychiatric disease affecting young people, MS threatens personal autonomy, independence, dignity, and future plans.5 As a relapsing-remitting disorder patients face an unpredictable course;6 as an incurable progressive disease patients have to respond to multiple new setbacks over time. Collectively these features mean that MS can threaten wellbeing to a particularly severe extent.7

The neurological complications of MS are well documented and have a major role in the personal burden of the disease. The disease typically starts with sensory disturbances, unilateral optic neuritis, diplopia, Lhermitte's sign (trunk and limb paraesthesias on neck flexion), limb weakness, poor coordination, and gait ataxia. However, the contribution of each symptom to overall distress or disability has rarely been studied. Additional burdens arise from neuropsychiatric complications that occur in part as a direct manifestation of demyelination and inflammation and in part because of the psychological effect of having to adapt to an unpredictable disease. The main neuropsychiatric features include (in decreasing order of frequency) anxiety, depression, cognitive impairment, irritability, and anger.8 Less common symptoms include disinhibition, delirium, psychosis, dementia, apathy, emotionalism, and behavioural disturbances.9 For many years these psychological and psychiatric dimensions have interested only specialists and have rarely featured in clinical trials or have been used by clinicians when assessing the effect of the disease.10 However, there is now increasing recognition that psychological, social, and psychiatric issues form vital segments of health-related quality of life (HRQoL), which is distinct from physical disability alone. For those involved in assessing new treatments, quality of life (QoL) measures may be more sensitive to change compared with conventional disability instruments. In this review we look at the clinical importance of HRQoL in MS, namely its practical measurement and its inter-relationship with psychosocial and emotional domains. We view QoL as a multidimensional index of wellbeing: the sum of all sources of satisfaction (including anticipated sources) minus all sources of worry (including anticipated threats) from the patient's perspective.

Section snippets

HRQoL in MS

HRQoL has been widely examined as an outcome measure in MS. The first study of HRQoL in MS11 was published in 1990 and the first comparative study appeared 2 years later.12 At least 90 studies have now measured QoL in patients with MS.13, 14 Studies in Canada,15 Norway,16 Spain,17 and the USA18 proved that many patients with MS have notable decrements in HRQoL; this is because the effect of disability in daily living is greater in MS (especially in its progressive form) than in other chronic

Predictors of HRQoL in MS

HRQoL is not just a measure of perceived health; however, research has focused largely on disease-related threats rather than sources of satisfaction.33 Studies in other areas of medicine illustrate that many distal factors have an influence that is greatly moderated by numerous proximal variables.34 Proximal measures of distress (such as hopelessness and depression) are among the strongest predictors, but many threats associated with a disease will be greatly reduced in the presence of

General, specific, and composite HRQoL measures

There has been a proliferation of HRQoL measures and there is now uncertainty about which measure to use in which situations.84 For clinicians new to the concept of QoL, many find measures of impairment, disability, and handicap easier to understand than HRQoL. Vickrey and colleagues85 looked at the properties of several HRQoL measures for MS and concluded that no single measure was clearly and consistently best in all situations. Different groups have tended to promote their own scale without

HRQoL in randomised drug trials in MS

In the last 8 years, HRQoL scales have gradually been incorporated into randomised controlled drug trials (table 4).64, 98, 114, 115, 116, 117, 118, 119, 120, 121, 122, 123, 124 To date several studies of interferon beta in patients with relapsing-remitting MS have used generic instruments. Results range from no effect on HRQoL to significant improvement, largely in physical dimension subscales.64, 114, 116, 117, 122 In the two studies that assessed the effect of interferon beta in secondary

Conclusions

Over the past 10 years HRQoL issues have been more intensively studied in MS than in any other neurological disorder.13 Although increasingly accepted in research, many busy clinicians do not see the usefulness of HRQoL measures when making medical decisions. The development of short and easy-to-use HRQoL instruments may change this. We suggest that ultra-short (panel 4)87 or short generic instruments (such as the EuroQoL) can be used in most clinical settings as a screening test to rule out

Search strategy and selection criteria

References for this review were identified by searches of Web of Knowledge (from 1981 to June 2005), PubMed (from 1966 to June 2005), Ingenta full text, Sciencedirect full text and Ovid full text. The terms “quality of life”, “disability”, “handicap”, “participation”, “perception”, “self-efficacy”, “carer”, “caregiver”, “health-related quality of life”, and “multiple sclerosis” were entered. Articles were also identified through searches of the references of articles and the authors'

References (150)

  • AM Barnwell et al.

    Prediction of psychological adjustment to multiple sclerosis

    Soc Sci Med

    (1997)
  • CE Schwartz et al.

    Measuring self-efficacy in people with multiple sclerosis: a validation study

    Arch Phys Med Rehabil

    (1996)
  • WD Voss et al.

    Contributing factors to depressed mood in multiple sclerosis

    Arch Clin Neuropsychol

    (2002)
  • V Janardhan et al.

    Quality of life in patients with multiple sclerosis: the impact of fatigue and depression

    J Neurol Sci

    (2002)
  • A Compston et al.

    Multiple sclerosis

    Lancet

    (2002)
  • BG Vickrey et al.

    Comparison of a generic to disease-targeted health-related quality-of-life measures for multiple sclerosis

    J Clin Epidemiol

    (1997)
  • J Siegrist et al.

    Conceptual and methodological problems in research on the quality of life in clinical medicine

    Soc Sci Med

    (1989)
  • C Jenkinson et al.

    The Nottingham health profile: an analysis of its sensitivity in differentiating illness groups

    Soc Sci Med

    (1988)
  • R Brooks

    EuroQoL: the current state of play

    Health Policy

    (1996)
  • AD Sadovnick et al.

    Epidemiology of multiple sclerosis: a critical overview

    Can J Neurol Sci

    (1993)
  • BG Weinshenker et al.

    The natural history of multiple sclerosis: a geographically based study I: clinical course and disability

    Brain

    (1989)
  • SP Morrissey et al.

    The significance of brain magnetic resonance imaging abnormalities at presentation with clinically isolated syndromes suggestive of multiple sclerosis: a 5-year follow-up study

    Brain

    (1993)
  • A Achiron et al.

    Cognitive impairment in probable multiple sclerosis

    J Neurol Neurosurg Psychiatry

    (2003)
  • C Confavreux et al.

    Early clinical predictors and progression of irreversible disability in multiple sclerosis: an amnesic process

    Brain

    (2003)
  • LL Mullins et al.

    Illness intrusiveness, uncertainty, and distress in individuals with multiple sclerosis

    Rehabil Psychol

    (2001)
  • A Feinstein

    The neuropsychiatry of multiple sclerosis

    Can J Psychiatry

    (2004)
  • JS Fischer et al.

    Neuropsychological effects of interferon beta-1a in relapsing multiple sclerosis

    Ann Neurol

    (2000)
  • I Brownscombe et al.

    Development of a disease-specific quality-of-life measure for multiple sclerosis

    Neurology

    (1990)
  • RA Rudick et al.

    Quality of life in multiple sclerosis: comparison with inflammatory bowel disease and rheumatoid arthritis

    Arch Neurol

    (1992)
  • Benito-LeónJ et al.

    A review about the impact of multiple sclerosis on health-related quality of life

    Disabil Rehabil

    (2003)
  • MV Nortvedt et al.

    The use of quality of life measures in multiple sclerosis research

    Mult Scler

    (2003)
  • Burden of illness of multiple sclerosis part I: cost of illness

    Can J Neurol Sci

    (1998)
  • MW Nortvedt et al.

    Quality of life in multiple sclerosis: measuring the disease effects more broadly

    Neurology

    (1999)
  • JM Morales-Gonzalez et al.

    A systematic approach to analyze health-related quality of life in multiple sclerosis: the GEDMA study

    Mult Scler

    (2004)
  • SJ Pittock et al.

    Quality of life is favorable for most patients with multiple sclerosis: a population-based cohort study

    Arch Neurol

    (2004)
  • GM Devins et al.

    Differences in illness intrusiveness across rheumatoid arthritis, end-stage renal disease, and multiple sclerosis

    J Nerv Ment Dis

    (1993)
  • EA Hakim et al.

    The social impact of multiple sclerosis: a study of 305 patients and their relatives

    Disabil Rehabil

    (2000)
  • HL Ford et al.

    Health status and quality of life of people with multiple sclerosis

    Disabil Rehabil

    (2001)
  • C Confavreux et al.

    Relapses and progression of disability in multiple sclerosis

    N Engl J Med

    (2000)
  • S Finger

    A happy state of mind

    Arch Neurol

    (1998)
  • E Barbotte et al.

    Prevalence of impairments, disabilities, handicaps and quality of life in the general population: a review of recent literature

    Bull World Health Organ

    (2001)
  • A Solari et al.

    The impact of multiple sclerosis on health-related quality of life

    Neurology

    (1999)
  • S Fruehwald et al.

    Depression and quality of life in multiple sclerosis

    Acta Neurol Scand

    (2001)
  • S Merkelbach et al.

    Is there a differential impact of fatigue and physical disability on quality of life in multiple sclerosis?

    J Nerv Ment Dis

    (2002)
  • KW Smith et al.

    Distinguishing between quality of life and health status in quality of life research: a meta-analysis

    Qual Life Res

    (1999)
  • Y Ben-Shlomo et al.

    What are the determinants of quality of life in people with cervical dystonia?

    J Neurol Neurosurg Psychiatry

    (2002)
  • G Pelletier et al.

    Quality of life in brain tumor patients: the relative contributions of depression, fatigue, emotional distress, and existential issues

    J Neurooncol

    (2002)
  • M Kreuter et al.

    Partner relationships, functioning, mood and global quality of life in persons with spinal cord injury and traumatic brain injury

    Spinal Cord

    (1998)
  • LS Boylan et al.

    Depression but not seizure frequency predicts quality of life in treatment resistant epilepsy

    Neurology

    (2004)
  • LouJ-S et al.

    Fatigue and depression are associated with poor quality of life in ALS

    Neurology

    (2003)
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