The following is an invited guest post-by Gisela Kobelt who presented with me at the EMSP meeting at the European Parliament last week. Her presentation complemented mine on early treatment and really put the Wow factor into the meeting; there is nothing like data to make policy makers sit up and listen.
Guest Post: Gisela Kobelt
Gavin, like you, I really enjoyed the experience of the European Parliament, and our discussing such important topics all together! Thank much for highlighting the presentation I gave, and for sharing one of the most important findings from this data for your readers – namely that early diagnosis and early effective treatment in MS is critical.
I really appreciate the opportunity to ‘guest blog’ today and am looking forward to hearing the thoughts and opinions of your readers.
Today, I wanted to share a bit more about some findings from our research, and I’m also attaching the presentation I used last Tuesday. I’ve spent the last 4 years on this Cost of Illness research – as I am convinced that having up-to-date real life data on health related quality of life and costs are crucial for all stakeholders.
The MS Cost of Illness Study, recently published in Multiple Sclerosis Journal, provides the most up to date information on the burden of multiple sclerosis to both society and MS patients. The study was endorsed by the European Multiple Sclerosis Platform (EMSP), jointly organized by European Health Economics and MAPI Group and financed by Biogen. Over 16,000 MS patients from across the 16 countries included in the study responded to the survey, which was disseminated and supported through local MS Societies and MS clinics. The study is anonymous and ethics approval was received in all the participating countries.
This data is used in health economic models that inform decision-making and estimate the value of interventions. The data is also relevant for policy makers and health systems – providing a present day snapshot of resource consumption of MS patients, information related to employment and new insights into MS symptoms and how they impact MS patients. Although the sample is one of convenience, we targeted at least 50-100 patients at each EDSS level in every country. There are substantial differences across the samples with respect to sample sizes by country, but more importantly to average age which directly impacts disease duration within the sample, disability, work capacity, and to a lesser extent, resource consumptions. This latter is influenced not only by the needs of the disease, but also by access and availability of services. Across the countries differences in health systems, the economy, medical and family traditions mean that any comparisons should be made cautiously.
So what did I find most critical from the results? A few things stand out for me:
First, the results confirm again that, as the disease progresses and disability increases, patient quality of life decreases and costs, in particular non-health care costs increase. It is therefore obvious that early intervention to change the course of the disease makes sense.
Second, I find the effect of MS on work capacity quite dramatic and an area where we could certainly improve support to patients. Among patients who are below the retirement age, between 30-65% depending on the country are not presently working and between 20 and 65% of these are not working due to MS. This impacts not only the patient but also to the economy in terms of production losses.
Third, I found the fact that virtually all patients complained of fatigue (95%) and 70% felt they had cognitive difficulties overwhelming. Most interestingly, these symptoms are very present very early in the disease and may explain why so many patients have to leave the workforce in early disease without physical impairment. Interesting also that fatigue is the most commonly reported symptoms among working MS patients – nearly 70%. This is a symptom that could be readily accommodated in working environments by employers.
Fundamentally, despite country differences in healthcare consumption driven partly by health systems, the detrimental impact of MS on patients is the same – as the disease progresses the effects worsen – and so is the effect on the countries’ economies in terms of production losses and the need for informal carers. These we can have a positive impact on. Getting patients diagnosed early and on treatment, can change the course of disease and keep patients at the lower end of the disability spectrum.
Kobelt et al. New insights into the burden and costs of multiple sclerosis in Europe. Mult Scler. 2017 Feb.
BACKGROUND: The current focus in multiple sclerosis (MS) is on early diagnosis and drug intervention, with a view to modifying disease progression. Consequently, healthcare costs have shifted from inpatient care and rehabilitation to outpatient care.
OBJECTIVES: This European burden of illness study provides data that can be combined with other evidence to assess whether management approaches provide value to society.
METHODS: A cross-sectional study was conducted in 16 countries. Patients reported on their disease, health-related quality of life (HRQoL) and resource consumption. Descriptive analyses were performed by disease severity. Costs are reported from a societal perspective in 2015€ PPP (adjusted for purchasing power parity).
RESULTS: The 16,808 participants had a mean age of 51.5 years, and 52% had relapsing-remitting multiple sclerosis (RRMS). Work capacity declined from 82% to 8%, and utility declined from normal population values to less than zero with advancing disease. Mean costs were 22,800€ PPP in mild, 37,100€ PPP in moderate and 57,500€ PPP in severe disease; healthcare accounted for 68%, 47% and 26%, respectively. Fatigue and cognitive difficulties were reported by 95% and 71% of participants, respectively; both had a significant independent effect on utility.
CONCLUSION: Costs and utility were highly correlated with disease severity, but resource consumption was heavily influenced by healthcare systems organisation and availability of services.
|Gisela at the MS Brain Health Stand; ECTRIMS 2016|