Do people with multiple sclerosis receive appropriate support from the National Disability Insurance Scheme matching their level of disability? A description of disease ‘burden and societal cost in people with multiple sclerosis in Australia’ (BAC-MS)

Abstract

Objective. This study is the first to assess if the National Disability Insurance Scheme (NDIS) package allocated to people with multiple sclerosis (pwMS) is correlated with the disability level measured by standardised neurological assessment.Methods. We aimed to recruit 10 pwMS per expanded disability status score (EDSS) step, including EDSS 0 (no disability) up to 9 (bedridden), and requested information about their NDIS application. Value of their packages was compared with mobility, cognition and psychological impact.Results. Out of 186 pwMS, only 49% of all patients had an NDIS package approved. The mean values of the annual allowance were AU$30 318 for patients with mild disability, AU$38 361 for moderate disability and AU$115 113 for severe disability. There was a striking variability in packages approved, but restricted mobility seems to be the driving factor. Rejection rates were ,20% in patients with mild and moderate disability and none in those with severe disability. The package value correlated with EDSS steps, cognitive impairment and physical impact, but not psychological impact.Conclusions. This is the first study to assess if NDIS packages correlate with internationally accepted disability scales. The NDIS support was correlated with disability measured by EDSS steps and cognition, but not psychological impact of the disease.What is known about the topic? There are over 25 000 Australians living with multiple sclerosis, which is one of the most common neurological diseases leading to disability in early age. The National Disability Insurance Scheme has been introduced since 2013 to particularly assist young disabled Australians to participate in the community. Whether the approved package correlates with internationally accepted disability scores has not yet been assessed. What does this paper add? This study is the first to correlate disability, as assessed by the Expanded Disability Severity Scale (EDSS), with the approved package value. What are the implications for practitioners? Multiple sclerosis is a very variable disease affecting quality of life not only due to impairment of mobility, but also cognition and mental health. Although the NDIS package value was correlated with an EDSS and cognition, the psychological impact of the disease is often neglected.

Treatment satisfaction in patients with relapsing-remitting multiple sclerosis initiated on teriflunomide in routine clinical practice: Australian observational data

“…As an observational study, a bias, based on disease severity and label indication, may have existed which could influence patient selection by the physician and risked recruiting a non-representative study sample. Although the mean age and gender demographics of the study cohort are similar to those reported in other real-world studies in Australia, 26 27 the baseline EDSS scores indicate a population with mild disease (85% with a baseline EDSS of 0–3). This is concordant with the treatment history which showed that 52% of the patients were treatment naïve and that the remainder had been switched to teriflunomide from a low efficacy agent.…”

Personality traits of patients with multiple sclerosis and their correlation with anxiety and depression levels: A cross‐sectional case–control study

“…The severity of disability in the MS patients was assessed based on the Expanded Disability Status Scale (EDSS), which evaluated pyramidal, cerebellar, brain stem, sensory, bowel and bladder, visual, and mental functions of patients (Şen, 2018). Patients with EDSS score 0 and 1 were considered without any disability and scores 4.5 and above were considered disabled (Lechner‐Scott et al., 2021).…”