People with multiple sclerosis report significantly worse symptoms and health related quality of life than the US general population as measured by PROMIS and NeuroQoL outcome measures

Amtmann, Dagmar; Bamer, Alyssa M.; Kim, Jiseon; Chung, Hyewon; Salem, Rana

doi:10.1016/j.dhjo.2017.04.008

Cited by 84 publications

(66 citation statements)

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“…Comorbidities were signi cantly associated with an increased MDASI sum score in our study. A cross-sectional study from the USA (51) found that symptom scores on all domains were signi cantly worse in people with multiple sclerosis than in the general population, also after adjusting for age and sex. Similarly, a study found that patients with systemic lupus erythematosus had symptom scores that indicated poorer average health status compared with the general population (52).…”

Section: Discussionmentioning

confidence: 99%

Symptoms in the general Norwegian adult population - prevalence and associated factors

Krogstad

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Grotmol

et al. 2020

Preprint

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Background: Patients´ own perceptions and evaluations of symptoms, functioning and other health-related factors, i.e. Patient Reported Outcomes (PROs), are important elements for providing good patient care. Symptoms are subjective and best elicited by the patient orally or by using PRO measures (PROMs), be it on paper, or as electronic assessment tools. Reference values on frequently used PROMs facilitate the interpretation of scores for use in clinics and research settings, by comparing patient data with relevant samples from the general population. Study objectives were to (1) present reference values for the M.D. Anderson Symptom Inventory (MDASI) (2) examine the occurrence and intensity of symptoms assessed by the MDASI in a general Norwegian adult population sample, and (3) examine factors associated with higher symptom burden defined as the sum score of all symptoms, and factors associated with symptoms` interference on functions.Methods: In 2015, MDASI was sent by mail as part of a larger survey, to a representative sample of the general Norwegian adult population (N = 6165). Medical comorbidities were assessed by the Self-Administered Comorbidity Questionnaire. Depression was self-reported on the Patient Health Questionnaire 9 (PHQ-9). Linear multivariable regression analysis was used to examine for factors associated with MDASI sum score and factors associated with symptoms’ interference on functions. Results: The response rate was 36%. More women (54%) than men (46%) responded. Mean age was 55 years (SD 14). The most frequent symptoms were fatigue (59.7%), drowsiness (56.2%) and pain (56.1%). Fatigue, pain and disturbed sleep had the highest mean scores. The presence of one or more comorbidities, increasing PHQ-9 score and lower level of education were associated with higher MDASI sum score (p<0.001). The MDASI sum score and the PHQ-9 score were positively associated with all interference items (p<0.001) except for walking (p=0.22). Conclusion: This study provides the first Norwegian reference values for MDASI. The presence of one or more comorbidities, higher level of depressive symptoms and lower level of education were significantly associated with higher MDASI sum score. These covariates must be controlled for when using the reference values.

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Section: Discussionmentioning

confidence: 99%

Symptoms in the general Norwegian adult population - prevalence and associated factors

Krogstad

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Grotmol

et al. 2020

Preprint

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“…Für die MS kann, wie auch für andere chronische Erkrankungen, eine reduzierte HRQoL im Vergleich zur Normalbevölkerung nachgewiesen werden [11,12]. Zudem konnten Studien zeigen, dass Menschen mit MS auch im Vergleich Menschen mit anderen chronischen Erkrankungen (wie beispielsweise Epilepsie, Diabetes mellitus und dem Zustand nach einer Nierentransplantation) eine schlechtere HRQoL aufweisen [13,14].…”

Section: Hintergrundunclassified

Der Einfluss von MS-spezifischen Symptomen auf die gesundheitsbezogene Lebensqualität

Sander

Kügler

Elsner

2020

Fortschr Neurol Psychiatr

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Zusammenfassung Hintergrund Multiple Sklerose (MS) ist eine chronisch progredient verlaufende Erkrankung, welche mit einer Vielzahl von MS-spezifischen Symptomen einhergeht. Viele dieser Symptome wirken sich negativ auf die gesundheitsbezogene Lebensqualität (Health Related Quality of Life, HRQoL) der Betroffenen aus. Bisher ungeklärt ist, welche MS-spezifischen Symptome einen besonders großen Einfluss auf die HRQoL haben. Methodik Die durchgeführte Untersuchung basiert auf den Daten einer Mitgliederbefragung der Deutschen MS Gesellschaft (DMSG) im Jahr 2015 (n = 424). Unter Berücksichtigung von soziodemographischen Variablen und allgemeinen medizinischen Variablen wurde der Einfluss der MS-spezifischen Symptome auf die HRQoL untersucht. Die HRQoL wurde mit dem Multiple Sclerosis Quality of Life-54-Instrument (MSQOL-54-Instrument) erhoben. In einem Vortest wurden alle Einflussfaktoren auf einen signifikanten Mittelwertunterschied (p = 0,05) bzw. eine mittlere Korrelation (Pearson’s r ≥ 0,3) getestet. Anschließend wurde der Einfluss der im Vortest identifizierten Variablen auf die HRQoL mithilfe der multiplen linearen Regressionsanalyse untersucht. Ergebnisse Für die Befragten konnte ein durchschnittlicher Physical Health Composite Score (PHCS) von 48,3 (sd = 17,7) und ein durchschnittlicher Mental Health Composite Score von 56,0 (sd = 20,1) errechnet werden. Als wichtigste Einflussfaktoren auf die HRQoL ergeben sich die MS-spezifischen Symptome Depression, Schmerz und kognitive Einschränkungen. MS-bedingte Symptome mit einem Mobilitätskontext zeigen negativen Zusammenhang mit dem PHCS. Sprechstörung und Schwindel sind mit einem abnehmenden MHCS verbunden. Der Beschäftigungsstatus ist der einzige sozioökonomische Faktor, der sich in der multiplen Regression signifikant auf die HRQoL auswirkt. Die allgemeinen medizinischen Faktoren zeigen keinen signifikanten Einfluss auf die HRQoL. Schlussfolgerung MS-spezifische Symptome haben einen großen Einfluss auf die HRQoL von Menschen mit MS. In der Untersuchung konnte gezeigt werden, dass besonders die sogenannten „versteckten Symptome“ einen wesentlichen Einfluss auf die HRQoL haben. Hier sind beispielsweise die Symptome Depression, Schmerz und kognitive Einschränkungen zu nennen. Diese sollten stärker in der Versorgung von Menschen mit MS berücksichtigt werden.

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“…Symptoms of the disease include fatigue, depression, sleep disturbance, and cognitive decline, while mental and physical fatigue is considered one of the most devastating symptoms, affecting more than 50% of the patients [13]. The impact of MS's symptomatology on patients' quality of life (QoL) is detrimental [14], with two-thirds of the sufferers reporting that pain prevented activities, impaired mobility and imposed limitations in social aspects of life [8,15].…”

Section: Introductionmentioning

confidence: 99%

“…Prevalence is estimated between 42-65%, whilst the wide range of reported rates mainly due to different methodological approaches and type of disorders; sleep abnormalities have been reported to be four times higher in MS compared to healthy populations [16][17][18]exceeding by far rates for other chronically disease patients. Poor sleep quality could have an adverse impact on patients' health and quality of life contributing even further to the overall disease burden [3,14].The nature of sleep abnormalities has multifactorial aetiologies and is significantly dependent on illness severity and intrusiveness [19]. The inevitable impact of low quality of sleep in patients' life is documented by various symptoms such as daytime sleepiness, impairment of cognition, mood fluctuations, as well as behavioural issues affecting patient's relationship with family, friends and caretakers [20].…”

Section: Introductionmentioning

confidence: 99%

“…The inevitable impact of low quality of sleep in patients' life is documented by various symptoms such as daytime sleepiness, impairment of cognition, mood fluctuations, as well as behavioural issues affecting patient's relationship with family, friends and caretakers [20]. A significant aspect on patients' quality of life is the contribution that lack of adequate restorative sleep has in the development of mental and physical fatigue [21,14].This link between sleep and fatigue development has been suggested to provide a sinister background on which the overall disability, which is the amalgam of all MS associated symptoms [22,4,1],develops, even though research on this topic is scarce within consistent findings [23][24][25].…”

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Sleep Abnormalities in Multiple Sclerosis

Sakkas

Giannaki

Karatzaferi

et al. 2019

Curr Treat Options Neurol

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Purpose of review: This review summarizes the most well documented sleep disorders seen in patients with Multiple Sclerosis (MS), with a special focus on the impact on quality of life. Recent findings: Sleep abnormalities in patients with MS are a multifactorial and relatively complex issue affecting approximately 60% of the patients while the pathophysiology of these symptoms is not fully understood. Circadian rhythm disorders and increased levels of Pro-inflammatory Cytokines have been recognized as potential players in affecting sleep homeostasis in MS patients. Medication related side effects such as in immunotherapy and other factors such as lesion load can contribute to the disruption of normal sleep patterns. Summary: Most frequently encountered sleep disorders are insomnia, sleep-related movement disorders, sleeprelated breathing disorders and circadian rhythm disorders affecting both adults and paediatric MS populations. Aetiology still remains unknown with treatment options focusing on behavioural cognitive therapy, life style modification including improvement in sleep hygiene as well as melatonin supplementation. Given MS prevalence is still rising affecting millions of people, more personalized medicine applications should possibly form the key approach for improving patients' quality of life and quality years.

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People with multiple sclerosis report significantly worse symptoms and health related quality of life than the US general population as measured by PROMIS and NeuroQoL outcome measures

Cited by 84 publications

References 35 publications

Symptoms in the general Norwegian adult population - prevalence and associated factors

Symptoms in the general Norwegian adult population - prevalence and associated factors

Der Einfluss von MS-spezifischen Symptomen auf die gesundheitsbezogene Lebensqualität

Sleep Abnormalities in Multiple Sclerosis

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