Disability leads to great costs for patients, society: Real-world data

Disability progression in people with multiple sclerosis (MS) significantly reduces their quality of life, affects their ability to work, and represents a major socioeconomic cost, according to real-world data collected from a German MS registry.

These results suggest that the use of disease-modifying therapies to slow MS progression early on in the disease course “could lead to better socioeconomic outcomes related to employment, reduce the need for informal care, and improve patient QoL [quality of life],” researchers wrote.

The study, “The socioeconomic impact of disability progression in multiple sclerosis: A retrospective cohort study of the German NeuroTransData (NTD) registry,” was published in the Multiple Sclerosis Journal – Experimental, Translational and Clinical.

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Most quality-of-life research based on patient surveys

MS occurs when the immune system mistakenly attacks the myelin sheath, a fat-rich covering around nerve fibers that helps them communicate more efficiently. Damage to this protective coating leads to a wide range of symptoms, which continuously progress to cause increasing disability.

Studies have demonstrated that greater disability is frequently linked with worse quality of life, a decreased ability to work and participate in social activities, and greater economic costs for the patient and society. Yet, most of these studies were based on surveys that relied on patient recruitment and self-completion of questionnaires.

In the new study, researchers at NeuroTransData (NTD) and Roche used data collected as part of a patient’s routine care to evaluate the overall impact of MS progression on socioeconomic costs and healthcare resources, as well as on patient quality of life.

The data came from MS patients enrolled in the German NTD MS registry, which contains real-world data, including demographic and clinical information, from about 22,000 MS patients followed at 66 clinics.

For the quality-of-life analyses, the team focused on a group of 9,821 MS patients who visited NTD clinics at least once between 2009 and 2019. Analyses examining socioeconomic costs and healthcare resource use, on the other hand, included a group of 7,286 patients with at least one visit to an NTD clinic in 2019.

The majority of patients in both groups were women, with a mean age in the late forties, and had relapsing-remitting MS. About three-quarters were using a disease-modifying therapy (DMT).

From a socioeconomic perspective, delaying disability progression may benefit both patients and society.

Quality of life significantly worsened with increasing disability

Disability was assessed with the Expanded Disability Status Scale (EDSS), whose scores range from zero to 10, with higher scores indicating greater disability. The average disability scores were 2.6 points in the quality-of-life group and 2.7 in the cost group, indicating minimal to moderate disability.

Results showed that quality of life significantly worsened with increasing disability. Scores on the European Quality of Life 5-Dimensions 5-Level questionnaire (EQ-5D-5L) — which includes assessments on mobility, self-care, usual activities, pain/discomfort, and anxiety/depression — decreased from 0.94 with an EDSS score of zero to 0.36 in patients with a disability score of 7, indicating a need for a wheelchair.

Increased disability was also accompanied by higher costs.

A notable increase was seen in non-medical costs with the need for walking aids and equipment when patients reached an EDSS score of four or higher, and domestic support and family care increased markedly at EDSS scores higher than 5.

Direct medical costs also increased with higher disability. These included visits to a physiotherapist, which were needed by 18.7% of patients with minimal to mild disability (EDSS 0-3.5) over one year and by 71.2% of those with severe disability (EDSS of 7 or higher). Other direct medical costs that markedly increased included the use of outpatient nursing care, and visits with an occupational therapist.

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Increasing disability also had impact on indirect costs

In addition to higher direct costs for patients and the healthcare system, increasing disability also had an impact on indirect costs, mainly because it significantly affected patients’ ability to work and increased the need for invalidity pensions.

While 93.9% of patients in the cost group were of working age (younger than 65 years), less than half of them (46.7%) were employed full-time. Among those with full-time jobs, 10.4% had taken at least one day of sick leave in the past 12 months, a number likely underestimated because the registry did not include non-MS sick days, according to the researchers.

Also, among those of working age, 20.2% were on a full or partial invalidity pension, which increased from 10% in patients with no to mild disability to 63.9% in patients with severe disability.

Overall, when also accounting for DMT use, the estimated societal costs per patient in 2019 increased from €19,315 (about $21,000) in people with no to mild disability, to €36,499 ($39,676) for those with moderate disability (EDSS between 4 and 6.5), to €58,576 ($63,675) for those with severe disability.

These “findings highlight the socioeconomic burden of MS disease progression and the potential value of halting or delaying disease progression through the early use of high-efficacy therapies,” the team concluded. “From a socioeconomic perspective, delaying disability progression may benefit both patients and society.”