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'
ReviewQuality of life and its assessment in multiple sclerosis: integrating physical and psychological components of wellbeing
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
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