Journal of Neurology & Neurophysiology

A Look at how Multiple Sclerosis affects Health-Related Quality of Life

Gerry Smith^{* *}Correspondence: Gerry Smith, Editorial office Journal of Neurology and Neurophysiology, Brussels, Belgium, Email:

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Introduction

Given that MS symptoms influence many elements of daily life, Health-Related Quality Of Life (HR-QOL) is an essential indicator of health in individuals with MS. Because these measurements require physician- or psychologist-administered exams rather than patient self- reporting, physicians may prefer to focus on physical or cognitive changes in MS patients. There are, however, a variety of validated tools available for assessing HR-QOL in clinical investigations. Several studies have employed these tools to assess the impact of standard Disease-Modifying Treatments (DMTs), such as interferon and glatiramer acetate, on HR-QOL in MS patients. Many of these studies found that DMTs improved various elements of patients' HR-QOL, but difficulties with research design, such as limited patient numbers or a lack of placebo control for comparison, made it difficult to interpret these findings. Two large, randomised, placebo-controlled studies of the newest DMT, natalizumab, found that it improved HR-QOL significantly in people with relapse MS. Furthermore, independent of illness features, the effects of natalizumab on HR-QOL were evident. The natalizumab studies conclusively demonstrate that HR-QOL measurements may be relevant in a clinical trial context and support the argument that patient-reported outcomes, including HR-QOL measures, should be included in clinical trials to more completely assess treatment effectiveness.

Health-related quality of life instruments are expected to be especially useful in the routine care of people with Multiple Sclerosis (MS), where they may help clinicians appreciate patient priorities, particularly in terms of treatment goals, facilitate physician-patient communication, and promote shared decision-making. However, it appears that these tools are rarely employed in ordinary therapeutic approaches to MS patients. To address this issue, I conducted a literature search for studies that assessed the usefulness of general or disease-specific Health-Related Quality Of Life (HRQOL) measures in MS clinical practise from the viewpoints of physicians or patients. I only identified one cross-sectional research that evaluated instrument preferences and assessed acceptance in adults with MS. The reasons for the absence of HRQOL assessment transfer to clinical practise might be cultural, methodological, or practical. In the case of MS, the proliferation of instruments appears to be a hurdle, with no one instrument gaining widespread appeal or consensus. Other limitations include a lack of resources for administration, data collecting, and storage, as well as clinicians' incapacity to score, interpret, and apply the HRQOL instrument to guide clinical therapy. As a result, it is critical to improve current methods and broaden clinical validation to include other settings and cultures. More research on the acceptability of various instruments, as well as physicians' and patients' preferences, is also necessary.

Given that MS symptoms influence many elements of daily life, Health-Related Quality Of Life (HR-QOL) is an essential indicator of health in individuals with MS. Because these measurements require physician- or psychologist-administered exams rather than patient self- reporting, physicians may prefer to focus on physical or cognitive changes in MS patients. There are, however, a variety of validated tools available for assessing HR-QOL in clinical investigations. Several studies have employed these tools to assess the impact of standard Disease-Modifying Treatments (DMTs), such as interferon and glatiramer acetate, on HR-QOL in MS patients. Many of these studies found that DMTs improved various elements of patients' HR-QOL, but difficulties with research design, such as limited patient numbers or a lack of placebo control for comparison, made it difficult to interpret these findings. Two large, randomised, placebo-controlled studies of the newest DMT, natalizumab, found that it improved HR-QOL significantly in people with relapse MS. Furthermore, independent of illness features, the effects of natalizumab on HR-QOL were evident. The natalizumab studies conclusively demonstrate that HR-QOL measurements may be relevant in a clinical trial context and support the argument that patient-reported outcomes, including HR-QOL measures, should be included in clinical trials to more completely assess treatment effectiveness.

Health-related quality of life instruments are expected to be especially useful in the routine care of people with Multiple Sclerosis (MS), where they may help clinicians appreciate patient priorities, particularly in terms of treatment goals, facilitate physician-patient communication, and promote shared decision-making. However, it appears that these tools are rarely employed in ordinary therapeutic approaches to MS patients. To address this issue, I conducted a literature search for studies that assessed the usefulness of general or disease-specific Health-Related Quality Of Life (HRQOL) measures in MS clinical practise from the viewpoints of physicians or patients. I only identified one cross-sectional research that evaluated instrument preferences and assessed acceptance in adults with MS. The reasons for the absence of HRQOL assessment transfer to clinical practise might be cultural, methodological, or practical. In the case of MS, the proliferation of instruments appears to be a hurdle, with no one instrument gaining widespread appeal or consensus. Other limitations include a lack of resources for administration, data collecting, and storage, as well as clinicians' incapacity to score, interpret, and apply the HRQOL instrument to guide clinical therapy. As a result, it is critical to improve current methods and broaden clinical validation to include other settings and cultures. More research on the acceptability of various instruments, as well as physicians' and patients' preferences, is also necessary.

Measurements of health-related quality of life

Over the last two decades, there has been a significant surge in interest in assessing outcomes in MS. The most often used standardised instrument is the Expanded Disability Status Assessment (EDSS), which is a combined impairment/activity restrictions scale based on neurological evaluation of eight functional systems, including ambulation/mobility status. Despite significant shortcomings, such as a bias toward locomotor function, varied sensitivity to change according to scale score, and unsatisfactory inter-rater reliability, the EDSS is frequently used by academics and doctors because its scores are easily comprehended by everybody. The importance of MS outcome assessment from the perspective of the person with the disease has recently been recognised. After 1992, the number of publications on Health-Related Quality Of Life (HRQOL) rose steadily, as did the use of MS-specific questionnaires. Generic measures were used to assess MS, whereas disease-specific instruments were developed and validated. There are seven MS-specific HRQOL assessments available, all of which were published between 1995 and 2001. Three modules are included: a general module (SF-36 or FACT-G) and an MS-specific module. In the majority of cases, persons with MS were involved in their development. These surveys are solely accessible in their original editions, with the exception of the MS Quality of Life 54 (MSQOL-54), which has been translated into numerous languages, and the Functional Assessment of MS (FAMS), which is also available in Portuguese. Aspects of responsiveness were assessed in four of the seven tools, but overall, sensitivity to change has received little attention.

HRQOL and normal clinical practise

HRQOL research in MS has attracted attention to the variety of domains that may be damaged by the disease, as well as the impact of this impairment on capacity to cope. People with MS, particularly those with a progressive course, report lower physical functioning when compared to the general population; they are more likely to suffer from tiredness and depression than the general population, and they are also more likely to be jobless. Surprisingly, it has been found that the priority placed on impairment in several HRQOL areas varies significantly across MS patients and their neurologists. The ultimate goal of HRQOL measurement is to give a full evaluation of patients' health condition, to serve as a baseline from which to adapt interventions, pharmaceutical or otherwise, and to assess their success, both in clinical trials and in ordinary care. HRQOL instruments are expected to be especially useful in routine care, where they may improve the detection of disease aspects that would otherwise go unnoticed, assist clinicians in appreciating patient priorities, particularly in terms of treatment goals, facilitate physician-patient communication, and promote shared decision making. Furthermore, HRQOL data from clinical trials can provide information that clinicians can usefully discuss with their patients. The European Agency for the Evaluation of Medicinal Products does not require HRQOL assessments as endpoints in MS studies. Even when HRQOL endpoints are included, data collection and reporting are frequently of low quality, resulting in cost effectiveness concerns, which HRQOL instruments can shed light on, such as maintained function, reduced work missed, and increased emotional well-being, not being examined.