The association of selected multiple sclerosis symptoms with disability and quality of life: a large Danish self-report survey

Abstract

Background People with multiple sclerosis (MS) experience a wide range of unpredictable and variable symptoms. The symptomatology of MS has previously been reported in large sample registry studies; however, some symptoms may be underreported in registries based on clinician-reported outcomes and how the symptoms are associated with quality of life (QoL) are often not addressed. The aim of this study was to comprehensively evaluate the frequency of selected MS related symptoms and their associations with disability and QoL in a large self-report study. Methods We conducted a cross-sectional questionnaire survey among all patients at the Danish Multiple Sclerosis Center, Copenhagen University Hospital, Denmark. The questionnaire included information on clinical and sociodemographic characteristics, descriptors of QoL and disability, as well as prevalence and severity of the following MS symptoms: impaired ambulation, spasticity, chronic pain, fatigue, bowel and bladder dysfunction, and sleep disturbances. Results Questionnaires were returned by 2244/3606 (62%). Participants without MS diagnosis or incomplete questionnaires were excluded, n = 235. A total of 2009 questionnaires were included for analysis (mean age 49.4 years; mean disease duration 11.7 years; and 69% were women). The most frequently reported symptoms were bowel and bladder dysfunction (74%), fatigue (66%), sleep disturbances (59%), spasticity (51%) and impaired ambulation (38%). With exception of fatigue and sleep disturbances, all other symptoms increased in severity with higher disability level. Invisible symptoms (also referred to as hidden symptoms) such as fatigue, pain and sleep disturbances had the strongest associations with the overall QoL. Conclusion We found invisible symptoms highly prevalent, even at mild disability levels. Fatigue, pain and sleep disturbances had the strongest associations with the overall QoL and were more frequently reported in our study compared with previous registry-based studies. These symptoms may be underreported in registries based on clinician reported outcomes, which emphasizes the importance of including standardized patient reported outcomes in nationwide registries to better understand the impact of the symptom burden in MS.

Disabled in Society - A Scoping Review on Persons Living with Multiple Sclerosis and Disability

“…These invisible symptoms have been shown to be common among persons with MS, even when they are clinically classified as not being particularly affected by their disease. 109 This is not unique to MS, as other diseases can also have symptoms that are not visible, eg. 110 However, the literature provided examples of how MS symptoms were related to societal barriers.…”

Life Experiences of Patients With Multiple Sclerosis About Their Spasticity: A Phenomenological Study

“…While most patients with MS were limited in their social lives due to fear of falling and anxiety about being disgraced since it was not clear when the spasticity would occur, some of them could not continue their working life due to severe spasticity. While quantitative studies on patients with MS who had spasticity showed that mental health and social function were negatively affected (Arroyo et al, 2013; Flachenecker et al, 2014; Gustavsen et al, 2021), similarly, it was determined in two qualitative studies that patients with MS experienced social embarrassment, anxiety, psychological distress, depressive feelings, social limitation, and anxiety about job loss due to spasticity (Morley et al, 2013; Nicolson & Anderson, 2001). Although it was reported in quantitative studies that physical functions were affected rather than mental health in patients with MS who had spasticity (Arroyo et al, 2013; Flachenecker et al, 2014; Gustavsen et al, 2021), in this study, as in the other two qualitative studies (Morley et al, 2013; Nicolson & Anderson, 2001), it was understood that patients suffered severe psychological problems related to spasticity to the extent that two participants even thought of committing suicide due to the pain and helplessness they experienced during contractions.…”

Health-Related Quality of Life Evaluation Using the Short Form-36 in Patients With Human T-Lymphotropic Virus Type 1-Associated Myelopathy

“…These findings are consistent with those reported in recent HRQoL studies in patients with multiple sclerosis and neuromyelitis optica, both of which are neuroinflammatory diseases causing symptoms similar to those in HAM. They reported that not gait dysfunction but chronic pain, including numbness, was associated with depression and mental health satisfaction ( 27 , 28 ). Third, leg pain, numbness, and urinary dysfunction were also associated with lower GH and VT scores.…”