- 9,000 people and their families live with MS throughout Ireland
- Average societal cost per person with MS amounts to €47,600
- Total cost of relapses amounts to €16.9 million
- People with MS report on average a 32% lower quality of life than the general population
- Reducing costly disease activity and disability progression is possible
A new report has revealed that MS costs Irish society more than €429 million each year resulting from direct costs[i], indirect costs[ii], intangible costs[iii] and costs associated with relapse. The report, based on an original piece of research carried out by MS Ireland and supported by Novartis, is titled The Societal Cost of MS and was officially launched today, Wednesday, 21st October 2015 at the National Art Gallery by MS Ireland.
Currently 9,000 people and their families live with MS throughout Ireland. This report shows that the direct healthcare cost of MS is €159 million, which includes spending on medical treatments and scans, doctors and hospital visits. According to the research, treating MS requires approximately 54,000 GP visits per year, more than 16,000 nights in hospital and more than 1,500 emergency department visits annually.
Some 84% of respondents visit their GP six times each year, while it was also revealed that people with MS account for around 21,800 neurology visits every year. When it came to hospital resources, over one fifth (or 21%) spent up to nine nights in acute hospital care.
Overall, each person with MS received nearly 1,000 hours of care per year, most of which are informally provided and unpaid. A quarter said their carers took time off work to provide care. Within this group of carers, one fifth (20%) had to give up work completely to provide care. Just 14% receive formal care, which is supplied privately. The majority, 63%, receive informal care from family and friends. A huge burden is placed on the spouse and partner; 60% report that their spouse or partner is the main caregiver.
The report also discovered that MS has a huge impact on a person’s mental health and wellbeing. A striking 1 in 3 people with MS had been diagnosed or treated for depression since their onset of MS and some 27% had been diagnosed or treated for anxiety, while the overwhelming majority (92%) reported having fatigue due to their MS.
The results also underscored the burden of MS on families and children. Of respondents, 61% said they felt they were not able to financially provide for their children as much as they would like to; one third (33%) reported that their MS impinged on their children and 73% felt their children worry excessively about their parents’ health.
Of the 595 respondents surveyed, 41% reported having a relapse in the previous year, with 1.83 relapses reported in the past 12 months on average. As a result of their most recent relapse, 47% of respondents said they rang or visited their GP and of these, 18% were admitted to hospital. The report discovered the indirect costs of a relapse are on average €1,101. The report notes that reducing relapses among those who live with MS would result in saved resources.
The report revealed that MS is associated with high costs, many of which are outside the healthcare system. Indirect costs include time lost from work, care needs, and transport amounted to an average of €23,754 per person with MS each year. Intangible costs – an economic value of the lost quality of life per year – amount to, €9,039.
The research highlights the need for access to interventions that reduce relapses, disability progression, and support working and living independently. It also highlights the need for improved employment opportunities and adoption of flexible work practices, as well as acknowledgement of the unpaid work carried out by carers.
The analysis examined different ways of reducing the impact of MS and showed how reducing the number of relapses experienced by those with MS could save upwards of €10 million each year.
When it comes to indirect costs, MS greatly affects employment. Employment is lower in the MS population than in the general population at just 43% and is lower for men than women. One third of people with MS reduced their working hours due to their condition, while another 25% have retired on medical grounds.
Dr Killian O’Rourke, Consultant Neurologist, Mater Misercordiae University Hospital and Clinical Lecturer at UCD, said, “The huge impact of MS on patients and the healthcare system has never been so clear. The far-reaching consequences throughout society are very evident. We can see the impact in primary care and within hospitals. One important finding is the burden of relapses, a reduction in which would save a huge sum each year.”
Dr Chris McGuigan, Consultant Neurologist at St Vincent’s University Hospital and Clinical Lecturer at UCD, said, “The impact of MS is striking on so many levels including mental health, family, children, career development and quality of life. The real-life testimony alongside the irrefutable statistics in this report is very impactful and we hope it drives home the need for added support for those affected by MS.”
Loretto O’Callaghan, Managing Director, Novartis, said, “This original piece of research undertaken by MS Ireland shows the economic, psychological and emotional impact of MS on the person, their families and on Irish society. Novartis is proud to partner with MS Ireland on this research which has delivered key insights and analysis on the burden of MS.”
Ava Battles, CEO, MS Ireland, said, “The research is extremely important for those who live with MS, their families and for healthcare professionals. We now need to use these findings to influence a reduction in relapses and in progression of the disabling disease. Responses from families throughout Ireland have clearly shown that improved employment opportunities are needed for those with MS. Both personal case studies and the research bring to life that people with MS and their families need extra support to ensure as high a quality of life as that of the general population. This report highlights the cost outside the health system that can often be forgotten.”