Socioeconomic burden of amyotrophic lateral sclerosis, myasthenia gravis and facioscapulohumeral muscular dystrophy

Schepelmann, Karsten; Winter, Yaroslav; Spottke, Annika; Claus, D.; Grothe, Cibele; Schröder, Rolf; Heuss, Dieter; Vielhaber, Stefan; Mylius, Veit; Kiefer, Reinhard; Schrank, Bertold; Oertel, Wolfgang H.; Dodel, Richard

doi:10.1007/s00415-009-5256-6

Cited by 82 publications

(74 citation statements)

References 30 publications

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“…The main components of costs were the expenditures of health insurance and the loss of productivity of patients and their caregivers. Disease severity of MG and assistance in activities of the daily life were independent cost-driving factors [56]. …”

Section: Discussionmentioning

confidence: 99%

Quality of life and life circumstances in German myasthenia gravis patients

Twork

Wiesmeth

Klewer

et al. 2010

Health Qual Life Outcomes

100

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BackgroundMyasthenia gravis (MG) is a chronic neuromuscular disease. Advances in medical therapy have continuously increased the life expectancy of MG patients, without definitively curing the disease. To analyze life circumstances and quality of life (QoL), a large German MG cohort was investigated.Methods and SampleIn cooperation with the German Myasthenia Association, 2,150 patients with confirmed MG were asked to respond to a mailed questionnaire. The standardized questions related to demographic data, impairments, therapeutic course, use of complementary therapies, illness-related costs, and quality of life (SF-36). In total, 1,518 patients participated, yielding a response rate of 70.6%. The average age was 56.7 years, and the proportion of females 58.6%.ResultsDespite receiving recommended therapy, many patients still suffered from MG-related impairments. In particular, mobility and mental well-being were reduced; moreover, quality of life was markedly reduced. Stepwise linear regression analysis revealed illness stability, impairments, mental conditions, comorbid diseases, and employment to be determinants of QoL.ConclusionResults indicate that despite prolonged life expectancy among MG patients, health-related quality of life is low. This outcome resulted mainly from impaired mobility and depression. Physical and mental well-being might be improved by additional therapy options. Additionally, health care resources could be used more efficiently in these patients.

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Section: Discussionmentioning

confidence: 99%

Quality of life and life circumstances in German myasthenia gravis patients

Twork

Wiesmeth

Klewer

et al. 2010

Health Qual Life Outcomes

100

View full text Add to dashboard Cite

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“…Though MND is relatively uncommon, with a prevalence of 7 in 100,000 (8) the associated direct (e.g. health care, expensive equipment) and indirect (lost productivity and income) costs and intangible losses (independence, quality of life) all contribute to the high cost of this illness to society (9).…”

Section: Introductionmentioning

confidence: 99%

A 10-year literature review of family caregiving for motor neurone disease: Moving from caregiver burden studies to palliative care interventions

et al. 2012

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Background: There is growing awareness that different terminal diseases translate into different family caregiver experiences, and the palliative and supportive care needs of these families are both similar and unique. Family members caring for people with motor neurone disease may experience exceptional strain due to the usually rapid and progressive nature of this terminal illness. Aim: The purpose of this review is to synthesize contemporary research and provide a comprehensive summary of findings relevant to motor neurone disease family caregivers, as well as highlight some of the suggested interventions to alleviate burden and improve quality of life for this group. Design: We conducted a comprehensive review of empirical research on family caregiving for people with motor neurone disease in peer-reviewed journals published in English, January 2000–April 2011. Fifty-nine studies met the inclusion criteria. Results: This comprehensive literature review was consistent with previous research documenting the substantial burden and distress experienced by motor neurone disease family caregivers and revealed important points in the trajectory of care that have the potential for negative effects. The diagnosis experience, assisted ventilation, cognitive changes and end-of-life decision making create challenges within a short time. This review has also implicated the need for improvements in access to palliative care services and highlighted the absence of interventions to improve care. Conclusions: Caregiver burden and quality-of-life studies on motor neurone disease family caregivers have so far dominated the research landscape .The focus needs to be on developing interventions that provide direct practical and psychosocial supports for motor neurone disease family caregivers.

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“…As such, diseaserelated costs over a 6-month period were collected. The health economics questionnaire used in this study has been applied in previously published studies on neurological diseases [17][18][19][20][21] . If patients had dementia, severe depression or psychosis, the data were obtained from the caregivers.…”

Section: Cost Evaluationmentioning

confidence: 99%

Costs of Parkinson’s Disease and Antiparkinsonian Pharmacotherapy: An Italian Cohort Study

et al. 2010

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Objective: Antiparkinsonian pharmacotherapy is costly and the determinants of drug costs in Parkinson’s disease (PD) have been poorly investigated. The objective of this study was to investigate the costs of PD and antiparkinsonian drugs in an Italian cohort of patients and identify cost-driving factors of drug therapy. Methods: Seventy outpatients with idiopathic PD were recruited in the Department of Neurology, Napoli University, Italy. Data on resource utilization were collected for 6 months using a bottom-up approach. Clinical status was evaluated using the Unified Parkinson’s Disease Rating Scale. Direct and indirect costs were calculated from the societal perspective (figures of year 2009). Independent determinants of total costs and costs of antiparkinsonian drugs were identified using multivariate regression analysis. Results: The total costs of PD were EUR 8,640 (95% CI: EUR 6,700–11,240) per patient over a 6-month period. Direct costs accounted for 70% of the total costs. Antiparkinsonian drugs (EUR 1,450; 95% CI: EUR 1,220–1,760) were the primary component of costs paid by the health insurance (39.6%) and one of the most expensive components of the direct costs (24.0%). The highest copayments made by patients were for antiparkinsonian drugs and medical equipment (58%). Independent determinants of the increased costs of antiparkinsonian pharmacotherapy were younger age and occurrence of motor fluctuations. Conclusions: Antiparkinsonian pharmacotherapy is one of the major cost components of PD-related costs for health insurance. It imposes a considerable economic burden on patients and their families as well.

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Socioeconomic burden of amyotrophic lateral sclerosis, myasthenia gravis and facioscapulohumeral muscular dystrophy

Cited by 82 publications

References 30 publications

Quality of life and life circumstances in German myasthenia gravis patients

Quality of life and life circumstances in German myasthenia gravis patients

A 10-year literature review of family caregiving for motor neurone disease: Moving from caregiver burden studies to palliative care interventions

Costs of Parkinson’s Disease and Antiparkinsonian Pharmacotherapy: An Italian Cohort Study

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