Societal costs of multiple sclerosis in Ireland

Abstract

Aims: This paper evaluates the impact of multiple sclerosis (MS) in Ireland, and estimates the associated direct, indirect, and intangible costs to society based on a large nationally representative sample.

Materials and methods: A questionnaire was developed to capture the demographics, disease characteristics, healthcare use, informal care, employment, and wellbeing. Referencing international studies, standardized survey instruments were included (e.g. CSRI, MFIS-5, EQ-5D) or adapted (EDSS) for inclusion in an online survey platform. Recruitment was directed at people with MS via the MS Society mailing list and social media platforms, as well as in traditional media. The economic costing was primarily conducted using a ‘bottom-up’ methodology, and national estimates were achieved using ‘prevalence-based’ extrapolation.

Results: A total of 594 people completed the survey in full. The sample had geographic, disease, and demographic characteristics indicating good representativeness. At an individual level, average societal cost was estimated at €47,683; the average annual costs for those with mild, moderate, and severe MS were calculated as €34,942, €57,857, and €100,554, respectively. For a total Irish MS population of 9,000, the total societal costs of MS amounted to €429m. Direct costs accounted for just 30% of the total societal costs, indirect costs amounted to 50% of the total, and intangible or QoL costs represented 20%. The societal cost associated with a relapse in the sample is estimated as €2,438.

Limitations and conclusions: The findings highlight that up to 70% of the total costs associated with MS are not routinely counted. These “hidden” costs are higher in Ireland than the rest of Europe, due in part to significantly lower levels of workforce participation, a higher likelihood of permanent workforce withdrawal, and higher levels of informal care needs. The relationship between disease progression and costs emphasize the societal importance of managing and slowing the progression of the illness.

Keywords:

• Cost of illness study
• internet-based recruitment
• multiple sclerosis
• survey design
• indirect costs
• intangible costs
• epidemiology
• Ireland

Note

Transparency

Declaration of funding

The study was part-funded by Novartis Ireland. IE02/NEU16-CNF017 Ethics approval was obtained from University College Dublin (UCD) Human Research Ethics Committee in February 2015.

Declaration of financial/other relationships

PC is a PhD candidate at UCD and an employee of Novartis Ireland. DO is an employee of Novartis Business Services Centre, Dublin, Ireland. CM is an employee of SVUH, Dublin. He has received research grant support from Bayer, Biogen, Genzyme, and Novartis; served on advisory boards for Biogen, Genzyme, and Novartis; and received speaker’s honoraria from Biogen, Genzyme, and Novartis. KO is an employee of The Mater Hospital, Dublin, Ireland. AL is an employee of MS Ireland. JME peer reviewers on this manuscript have no relevant financial or other relationships to disclose.

Acknowledgments

The authors thank Ms Shauna Preston, who provided research assistance throughout the early stage of this project; Ms Shauna Corless, who provided administrative support throughout the later stage of this project; Ms Ava Battles, Ms Harriet Doig, and other staff of MS Ireland, who facilitated and supported recruitment to this study; and Irish people living with MS who participated in this research.

Previous presentations

A poster of preliminary results was presented at ECTRIMS, London, 2016.

Notes

1 Presenteeism relates to lost productivity at work due to health problems. Presenteeism arises when a person attends for work, but is not performing their duties as expected in terms of quality or quantity.