Dr Mar Mendibe is a neurologist with over 18 years’ experience. Her experience spans all aspects of multiple sclerosis (MS) but her particular interest is in medicine and surgery. Mar currently works at the Cruces University Hospital and is also a Professor of the Department of Neurosciences at the University of the Basque Country.
‘Quality of life’ is a concept defined by the World Health Organization (WHO) as an individual’s perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns. The resulting term when this concept is applied to healthcare is ‘Health-related Quality of Life’ (HRQoL). It is a complex concept which involves physical, emotional and social aspects of life.
When it comes to quality of life, the patient’s perceptive is particularly important. During the analysis of assessment results, various symptoms and signs may be discovered, which may have gone unnoticed at previous consultations. These assessments provide important additional information.
With an increased prevalence of chronic disease, HRQoL assessment has grown in importance, particularly in Multiple Sclerosis (MS) patients. HRQoL is considered as a significant measure of the impact of chronic disease. In fact, some studies revealed that MS patients have a worse perception of quality of life than those affected by other chronic diseases such as diabetes mellitus, some rheumatic diseases and coronary heart disease.
Since the first study of HRQoL in MS patients, published in 1990, numerous studies have been conducted across the globe with the mutual aim of determining the different symptoms of the disease and their impact on quality of life. These studies have identified the main aspects that affect HRQoL in MS patients: physical factors (fatigue, motor/sensory disorders, pain, urinary/sexual issues); psychological factors (depression, anxiety, loss of cognitive function, attitude towards the disease), and social factors (changes in social/family relationships, difficulty maintaining a work life).
HRQoL is a multi-dimensional and dynamic concept, which changes throughout the evolution of the disease. Amongst others, it is known that depression, pain, physical disability and urological problems can have a significant impact on HRQoL.
When analysing HRQoL, a variety of questionnaires with a particular focus on the patient’s perceptions are used. They are very useful tools which give a general overview of each patient, they allow us to identify their needs and any previously undetected complications. These tests provide information that helps us optimise symptomatic treatment and control the evolution of the disease, facilitate the option of therapy, detect potential side effects and improve adherence to treatment.
There are two types of questionnaires: generic, such as the Medical Outcomes Study 36-item Short Form (SF-36), which can be used to analyse various chronic diseases; and MS specific questionnaires such as the Multiple Sclerosis Quality of Life 54 (MSQoL-54) and the Functional Assessment of Multiple Sclerosis (FAMS).
The SF-36 questionnaire is one of the most used. It takes around 5-20 minutes and the patient can complete it on their own. It involves 36 questions or items regarding physical function, body pain, general health, energy, social function, emotional state and mental health. However, other relevant aspects to MS patients, such as cognitive disorders, sleep issues and sexual disorders, are not considered.
The specific MSQoL-54 is completed in around 15-20 minutes. It consists of general questions extracted from SF-36 and an additional 18 MS-specific questions regarding sleep, pain, health concerns, cognitive function, social life, sexual issues and quality of life in general. When compared to other questionnaires its strengths are its reliability, short length and the potential for comparison against other diseases and/or the general population. However, it presents a low correlation with disability assessments measured using the Expanded Disability Status Scale (EDSS).
HRQoL questionnaires allow for a comprehensive assessment of the impact of MS. Additionally, they provide information which adds significance to other frequently used measures in the overall assessment of the disease, such as magnetic resonance imaging (MRI), relapse/progression rates, no evidence of disease activity (NEDA) and the parameters measured using the EDSS or Multiple Sclerosis Functional Composite (MSFC) scales. These HRQoL questionnaires are used in clinical trials with new treatments; therefore, their incorporation into daily medical practice is a priority.
It would be beneficial for MS patients to discuss a quality of life assessment during the various stages of therapeutic intervention, for example when changes to treatment are made, or at the start of rehabilitation or physiotherapy programmes, or cognitive rehabilitation programmes. The assessment should be coordinated by everyone involved in MS healthcare (patients, doctors, nurses, psychologists, technicians etc.)
For neurologists, the main barrier experienced when it comes to carrying out the QoL questionnaires is a lack of time. Questionnaires such as the SF-36 and MSQoL-54 take around 20 minutes; these can be completed regularly by a large number of patients before each consultation.
To help you discuss your quality of life and treatment priorities with your doctor at your next appointment, create your own Talk to Your Doctor guide.