In a recent review published in the European Journal of Neurology, A. P. Lysandropoulos from the University of Brussels and E. Havrdova, from the University of Prague described some ‘hidden’ issues that influence the quality of life (QoL) in patients with Multiple Sclerosis (MS). In the review, researchers also discussed the limitations concerning the measurement of QoL and provide early evidence for the benefits of specific psychological support on patients’ QoL.
QoL in patients with MS is influenced by factors beyond pathophysiology and disease process, and is frequently at odds with objective measures of disease. MS patients may be well treated and free of symptoms but still have poor QoL due to patient-centered factors such as depression, inability to work and relationship issues.
In the review entitled “Hidden’ factors influencing quality of life in patients with multiple sclerosis”, the researchers firstly mentioned that amongst the first critical parameters influencing QoL in MS patients is the MS ‘label’. The mere thought of MS can strike fear in people even in the absence of any knowledge about the disease. At the time of an MS diagnosis, many patients immediately visualize themselves in a wheelchair, and this pessimistic perception of the disease determines the way in which a patient analyses his or her symptoms by amplifying them.
Cognitive impairment is another factor that is increasingly being recognized as part of the symptomatology of MS, existing alongside physical symptoms and limitations. Since patients become less effective professionally and socially, impaired cognition can lead to a vicious cycle of frustration with negative impact on QoL. Cognitive issues can develop early in the course of MS, particularly with respect to processing speed and handling of complex information.
Sexual dysfunction is also frequent in MS patients, and it is reported to occur in up to three-quarters of women and up to 90% of men. Sexual dysfunction has been shown to have a greater detrimental effect on mental health aspects of health-related QoL in MS patients than the severity of physical disability.
Regarding MS as a family problem, a diagnosis of MS is traumatic not only for the patient but also for the patient’s family. Most MS patients are diagnosed at a relatively young age and it is only natural for parents to be concerned about their child. Life plans such as work, relationships and family planning may be adversely affected by MS, and feelings of anger, denial and fear are not limited to the patient but are also experienced by the family.
A real limitation regarding the measurement of QoL in MS patients is the lack of validated instruments. Traditional approaches used to measure QoL in MS tend to lack sensitivity to change, and the current repertoire of tools does not allow for easy assessment of all aspects of the disease, including the many hidden issues that influence QoL.
Physical and cognitive difficulties have a negative psychological impact on MS patients and, in turn, on their QoL. Psychological interventions for MS are necessary to address all the factors that influence QoL in patients. The beneficial effects of psychological support in MS patients may go beyond improved patient-centered outcomes and impact directly on disease activity.
The authors believe that, as with other chronic diseases, it can be argued that QoL is a more relevant outcome in MS patients than traditional measurements such as disability or neurological impairment. However, much work needs to be done before QoL assumes its rightful position as the primary outcome measure in clinical trials and clinical practice. According to the authors, elements that influence QoL in MS patients need to be better defined and there is a need to be clarified which of the many QoL instruments should be used and for what purposes. Moreover, the authors mentioned that more evidence is required of the benefits of psychological support strategies on both disease progression and QoL in MS patients.
The authors concluded that future studies are expected to better define the most suitable means of assessing patient-centered outcomes in MS, and identify the most appropriate management strategies for individual patients.