Author Of 3 Presentations
P0707 - Costs and health-related quality of life in patients with neuromyelitis optica spectrum disorder and MOG-antibody associated disease (CHANCENMO-Study) (ID 1015)
- M. Hümmert
- L. Schöppe
- J. Bellmann-Strobl
- N. Siebert
- F. Paul
- A. Duchow
- H. Pellkofer
- T. Kuempfel
- J. Havla
- S. Jarius
- B. Wildemann
- F. Then Bergh
- M. Pawlitzki
- L. Klotz
- I. Kleiter
- M. Stangel
- S. Gingele
- M. Weber
- J. Faiss
- R. Pul
- A. Walter
- U. Zettl
- M. Senel
- J. Stellmann
- V. Häußler
- K. Hellwig
- I. Ayzenberg
- O. Aktas
- M. Ringelstein
- O. Schreiber-Katz
- C. Trebst
Neuromyelitis optica spectrum disorder (NMOSD) and myelin oligodendrocyte glycoprotein-antibody associated disease (MOG-AD) are orphan diseases with high impact on quality of life and to date unknown socio-economic burden.
The aim of this study was to evaluate costs and health-related quality of life of NMOSD and MOG-AD from the societal perspective.
In a multicenter cross-sectional study throughout Germany between 04/2017 and 04/2019, the primary data on retrospective consumption of medical and non-medical resources and work ability related to NMOSD and MOG-AD were assessed via standardized and pre-tested paper-based patient questionnaires. Health-related quality of life was captured by the EuroQoL Group EQ-5D-5L questionnaire. Clinical data were retrieved from the Neuromyelitis Optica Study Group (NEMOS) database. Patient recruitment took place at 17 German NEMOS centers. Costs were analyzed in EUR for 2018.
During the recruitment period, 218 of 275 adult patients were screened for eligibility. 212 patients (80.2% women; mean age 49 ± SD 15 years; mean disease duration 9 ± SD 8.5 years; Expanded Disability Status Scale (EDSS) 3.7 ± SD 2.1) were analyzed. The mean total annual per capita cost of illness accounted for EUR 59 576 and the mean index value of the EQ-5D-5L was 0.693. Given an estimated prevalence of NMOSD in Germany of 1.3/100 000, the annual burden from the societal perspective adds to EUR 64.3 Mio for Germany. The most important cost drivers were informal care costs (27.6% of total costs), indirect costs (23.3%; particularly loss of salary) and drugs, especially immunotherapeutics (16.4%). Costs showed a significant positive correlation with disease severity (p<0.0001); in the EDSS 6.5-8.5 subgroup the annual costs were EUR 129 436. Moreover, the health-related quality of life revealed a negative correlation with disease severity (p<0.0001); in the EDSS 6.5-8.5 subgroup the mean index value was 0.195.
These German data from the era without approved standard medications show enormous effects of the disease on costs and quality of life and might be helpful for estimating the impact and cost-effectiveness of new therapeutic approaches.
P0741 - Pain, depression and quality of life in adults with MOG-antibody associated disease (ID 1622)
Myelin oligodendrocyte glycoprotein-antibody (MOG-ab) associated disease (MOGAD) is an inflammatory autoimmune condition of the CNS, clinically resembling seropositive neuromyelitis spectrum disorder (NMOSD). Despite severe pain is one of the most frequent and disabling symptoms in NMOSD, data on pain in MOGAD are scarce and clinical case reports and series often ignore it as a severe symptom.
To assess features of chronic pain, depression, and their impact on health-related quality of life (hr-QoL) in MOG-antibody associated disease (MOGAD).
Patients with MOGAD were identified in the Neuromyelitis Optica Study Group (NEMOS) registry. Data were acquired by a questionnaire, including clinical, demographic, pain (PainDetect, Brief Pain Inventory - short form, McGill Pain Questionnaire - short form), depression (Beck Depression Inventory-II), and hr-QoL (Short Form-36 Health Survey) items.
Forty-three patients (29 female, 14 male) were included. Twenty-two patients suffered from disease-related pain (11 nociceptive, 8 definite neuropathic, 3 possible neuropathic pain). Patients with neuropathic pain reported higher pain intensity compared to those with nociceptive (pain severity index (PSI)±SD: 5.7±2.0 vs. 2.8±1.3, p=0.003) and more profound impairment of activity of daily living (ADL). Fifteen patients reported spasticity-associated pain, including four with short lasting painful tonic spasms. Twelve patients received pain medication, still suffering from moderate pain (PSI±SD: 4.6±2.3). Only four out of 10 patients with moderate to severe depression took antidepressants. Physical QoL was more affected in pain-sufferers (p<0.001) than in patients without pain, being most severely reduced in patients with neuropathic pain (p=0.016) compared to other pain-sufferers. Pain severity (B=-5.455, SE=0.810, p<0.001), visual impairment (B=-8.163, SE=1.742, p<0.001), and gait impairment (B=-5.756, SE=1.875, p=0.005) were independent predictors of low physical QoL. Depressive state (B=-15.484, SE=2.896, p<0.001) was the only predictor for reduced mental QoL.
Being highly prevalent, pain and depression strongly reduce QoL and ADL in MOGAD. Although treatable, both conditions remain insufficiently controlled in real-life clinical practice
P0742 - Pain, depression and quality of life in NMOSD: a cross-sectional study of 166 AQP4-antibody seropositive patients in Europe (ID 1645)
“Spinal pain”, girdle-like dysesthesia, and painful spasms were noted already in earliest disease descriptions in the 18th century. Nowadays it has become clear that pain is a frequent and one of the most disabling symptoms in these patients. Due to the rarity of NMOSD most previous studies of pain and depression were relatively small or included a mixed population AQP4-IgG-seropositive and seronegative patients, while recent clinical trials clearly indicate that pathogenetic mechanisms are different in these forms.
To evaluate prevalence, clinical characteristics and predictive factors of pain, depression and their impact on the quality of life (QoL) in a large European seropositive neuromyelitis optica spectrum disease (NMOSD) cohort.
We included 166 patients with aquaporin-4-seropositive NMOSD from 13 tertiary referral centers of Neuromyelitis Optica Study Group (NEMOS). Clinical data, including expanded disability status scale and localization of spinal lesions on MRI, were retrieved from the NEMOS database or local electronic patient records. Data on pain, depression and quality of life were captured by self-reporting questionnaires.
125 (75.3%) patients suffered from chronic NMOSD-associated pain. Of these, 65.9% had neuropathic pain, 68.8% reported spasticity-associated pain and 26.4% painful tonic spasms. Number of previous myelitis attacks (OR 1.27, p=0.018) and involved upper thoracic segments (OR 1.31, p=0.018) were the only predictive factors for chronic pain. Interestingly, the latter was specifically associated with spasticity-associated (OR 1.36, p=0.002), but not with a neuropathic pain. 39.8% suffered from depression (moderate to severe in 51.5%). Pain severity (OR 1.81, p<0.001) and especially neuropathic character (OR 3.44, P<0.001) were strongly associated with depression. 70.6% of patients with moderate or severe depression and 42.5% of those with neuropathic pain had no specific medications. 64.2% of those under symptomatic treatment still reported moderate to severe pain. Retrospectively, 39.5% of pain-sufferers reported improvement of pain after start of immunotherapy: 37.3% under rituximab, 40.0% under azathioprine, 33.3% under mycophenolate mofetil and 66.7% under tocilizumab. However, there was no difference in terms of pain prevalence or intensity in patients with different immunotherapies. Pain intensity, walking impairment and depression could explain 56% of the physical QoL variability, while depression was the only factor, explaining 46% of the mental QoL variability.
Myelitis episodes involving upper thoracic segments are main drivers of pain in NMOSD. Although pain intensity was lower than in previous studies, pain and depression remain undertreated and strongly affect QoL. Interventional studies on targeted treatment strategies for pain are urgently needed in NMOSD.