By Dr Azer Majeed , ST5 Neurologist , Royal Victoria Infirmary
MS Foundation MasterClass 7, 2019
Diagnosis and management of relapsing remitting multiple Sclerosis (MS) has evolved considerably over time and, with a range of treatment options available now, it has become highly specialised. Timely and accurate diagnosis is vital for early intervention as time is brain. Currently, there are no internationally recognised quality standards for timing of important events across the MS diagnostic pathway and diagnosis is often prolonged.
Diagnosing MS can be challenging with a misdiagnosis rate of up to 20% in some studies. It has been suggested that neurologists who specialise in MS (MSologists) are best placed to provide routine diagnosis and management of these patients and there is some evidence that diagnosis of MS is quicker in specialised clinics (1)
NICE recommends all people suspected of having MS should be referred to and diagnosed by a neurologist (2). We were interested to see if there was any difference in timing of diagnosis and treatment when patients were referred initially to a general neurologist as compared to directly to the MSologist in Sunderland Royal hospital. The results could potentially lead to service development and change of referral pathways.
National Institute for Health and Care Excellence (NICE) recommends that any person with a diagnosis of MS should be offered a face-to-face follow-up appointment with a healthcare professional with expertise in MS to take place within 6 weeks of diagnosis.
Currently, there are no standards for timings of events across the MS diagnostic pathway however there has been a recent recommendation from a panel of MS experts (3).
Sunderland royal hospital provides acute hospital services to a population of around 350,000 people across the Tyne and Wear and Durham area. It has five neurology consultants including one MS neurologist along with a dedicated MS nurse specialist who run weekly clinics for new referrals as well as follow up patients.
Retrospective review of 25 patients, who were started on their first DMT during a randomly chosen two-year period June 2016 and 2018, was conducted and the electronic record system of the hospital was used for that purpose.
17 of those patients were referred initially to a neurologist during this period with an average age of 38 while 8 patients were referred directly to the MSologist with an average age of 35. (Table 1)
Table 1: Patient profile of the two groups
The mean wait from referral to review by a general neurologist was 79 days as compared to 25 days when reviewed directly by the MSologist. This was the most important difference in time to diagnosis which was 134 days for those reviewed by a general neurologist as compared to 49 when reviewed by the MSologist. (Figure 1)
Almost the same percentage of patients had a lumbar puncture in both groups (3/7 (43%) under MSologist: 8/17 (47%) under neurologist).
Similarly, almost half the patients had already had MRI head before review in both groups (4/8 (50%) under MSologist: 8/17 (47%) under general neurologist).
10/17 (59%) patients, diagnosed with MS by a general neurologist, were referred within six weeks to a healthcare professional with expertise in MS with mean delay from diagnosis of 48 days. 5/17 (29%) patients were seen by a MS specialist, nurse or consultant, within 6 weeks from diagnosis which is the NICE recommended quality statement.
Table 2: Comparison of timing of different steps in diagnosis and management of patients with suspected MS when reviewed by a neurologist as compared to a MSologist.
Discussion and conclusions:
MS is a rapidly evolving discipline and it has become highly sub-specialised with an emphasis towards early diagnosis and treatment. MSologists have an in-depth knowledge of the latest changes in the MS landscape and they have direct access to relevant diagnostic and monitoring tools which makes earlier diagnosis more likely(4).
This audit, despite some limitations, adds weight to the argument that direct referral to a MSologist should be the gold standard of patient care as time to diagnosis, and subsequently treatment, of MS was better than halved if the patient saw a MSologist straight off. Additionally, there were delays, in referral to MS specialists, when patients were first seen by neurologists, which meant that only a third of those patients were able to see a MS specialist within the NICE stipulated timeline of 6 weeks from diagnosis.
There is a need to increase awareness among the General practitioners regarding the presenting symptoms of MS to increase direct referrals to MS specialists. At the same time, the MS service in Sunderland needs to be expanded, with the addition of at least one MSologist and a MS nurse specialist, to increase the capacity of the service to see more direct referrals.
Currently, there are no national or internationally agreed standards for timing of important steps in diagnosis and management of MS and there is an urgent need for that to improve and standardise MS services.
- Adamec I, Barun B, Gabelić T, Zadro I, Habek M. Delay in the diagnosis of multiple sclerosis in Croatia. Clin Neurol Neurosurg. 2013;115 Suppl 1:S70-2.
- National Institute for Health and Care Excellence. Multiple sclerosis in adults: management, Clinical guideline [CG186]. 2014. Available from: https://www.nice.org.uk/guidance/CG186/chapter/1-Recommendations#diagnosing-ms-2.
- Hobart J, Bowen A, Pepper G,et al. (2018). International consensus on quality standards for brain health-focused care in multiple sclerosis. Multiple Sclerosis Journal. 2018.
- Giovannoni G, Butzkueven H, Dhib-Jalbut S, et al. Brain health: time matters in multiple sclerosis. Mult Scler Relat Disord. 2016;9(suppl 1):S5-S48