Transforming MS Services in Lancashire: Mapping the trajectory from referral to treatment
Multiple sclerosis (MS), an inflammatory disorder of the central nervous system, is the leading cause of neurological disability in young adults.1 It has a profound impact on an individual’s quality of life, apart from a spectrum of social and economic implications.1-3 The landscape of management has changed over the last decade, driven by a variety of factors but mainly, the availability of an array of new disease modifying therapies (DMTs).
It is well recognised that early intervention with DMTs, where appropriate, substantially improves long term outcomes of patients with relapsing remitting MS and has led to the concept of ‘time is brain’.2,3 A number of treatment guidelines, including from the Association of British Neurologists (ABN) recommend early intervention with DMTs, not only to reduce relapses and accumulation of disability but also to preserve brain and cognitive reserve. 2,3
This audit aims to map the patient journey from the time of referral from primary care to diagnosis and institution of DMTs (where applicable), with the view of identifying any diagnostic and treatment delays.
3. Methods and Materials
3.1 Study setting
The study was conducted at Royal Preston Hospital, Lancashire Teaching Hospitals NHS Foundation Trust (LTHTR). The Neurology department at LTHTR serves an approximate population of 1.6 million in Lancashire and South Cumbria in North West England.
The neurology service is configured in a ‘hub and spoke’ model; the model sees neurology department at Royal Preston Hospital as the hub, supporting spokes or satellite clinics in six peripheral hospitals which includes Royal Lancaster Infirmary, Burnley General Hospital, Royal Blackburn Hospital, Pendle Community Hospital, Blackpool Victoria Hospital and Chorley District General Hospital.
3.2 Study design
A retrospective review of the electronic case notes of patients diagnosed with MS from at January 2017 to January 2018.
3.3 Study population
Patients diagnosed with MS, irrespective of the disease phenotype, by a Consultant Neurologist in the study area during the period January 2017 to January 2018 were recruited into the study.
3.4 Data collection
Patients were identified through the Preston MS database which is an electronic password protected resource. Electronic case notes of study subjects were scrutinized where available, for the following details: demographics, age of symptom onset, presenting symptom, date of referral, date of initial neurology appointment, date of diagnosis and date DMT started (if applicable). The date of diagnosis was taken as the date when the diagnosis of MS was disclosed to the patient. The extracted data were entered on a Excel sheet.
65 patients were identified from the MS database who were diagnosed in 2017. 50 of these were relapsing remitting MS (RRMS), 8 primary progressive (PPMS), 4 benign, 1 secondary progressive with the remaining not clearly defined. Of those diagnosed with MS, 65% were female and 35% male. The average age of newly diagnosed RRMS and PPMS were 40.7 and 51.8 years respectively.
60% of those confirmed to have MS were referred from primary care. The next largest group of referrals came from inpatient medical referrals (12%) followed by 9% referred from ophthalmology. Symptom at presentation varied considerably with 35% having only sensory symptoms, 17% sensorimotor, 14% motor and 14% optic neuritis. All patients with optic neuritis were referred from ophthalmology.
The mean time from referral to first review for RRMS was 84 days (range 0-238 days) compared with 66 days for PPMS (range 0-193). Investigations performed to confirm the diagnosis included a lumbar puncture in 88% of the RRMS and PPMS patients. Of the RRMS patients 79.5% were positive for oligoclonal bands compared to 100% positive in PPMS.
The choice of DMT was advised specifically by a consultant in consultation with the patient in 47% of cases. The remaining were chosen by MS nurses with the patient in the MS nurse clinic. 2% of patients declined starting a DMT and 24% did not qualify for DMTs. Of those with RRMS, 28% were started on dimethyl fumarate, 18% on glatiramer acetate, 12% natalizumab, 8% plegridy and 4% cladrabine.
Slight variation between choice of DMT existed between consultants and specialist nurses. As would be expected, consultants were more likely to initiate natalizumab. Consultants chose dimethyl fumarate in 39% of cases compared with 35% in MS nurse clinics. Copaxone was chosen in 35% MS nurse led clinics compared with 18% in consultant clinics.
The average time after diagnosis to start a DMT when indicated was 95 days (range 6-274 days). Time to start natalizumab infusions were shorter at 55 days.
This audit demonstrates significant diagnostic delays in MS, largely due to the long waiting times to see a neurologist in our centre. Moreover, there were further delays in commencing DMT once the decision to treat was made, the reasons for which will need to be explored and addressed. The findings will be presented in the neurology departmental clinical governance meeting with the intent of setting up a ‘fast track’ MS diagnosis clinic and ironing out the factors impeding commencement of DMT after a decision to treat had been made.
However, the issues identified in our cohort appears not to be an isolated issue. This begs the question as to whether the problem is endemic rather than centre specific. A major step forward in improving care of patients with MS would be to undertake a national audit similar to the ‘Adult first seizure audit’ spearheaded by the International League against Epilepsy. Exploring these dynamic challenges is exciting and the neurology academy could certainly lead the way in this area – the batteries must certainly be charged to save time and brain!
- Compston A, Coles A. Multiple sclerosis. Lancet 2008;372(9648):1502-17.
- Giovannoni G, Butzkueven H, Dhib-Jalbut S, Hobart J, Kobelt G, Pepper G,Sormani MP, Thalheim C, Traboulsee A, Vollmer T. Brain health: time matters in multiple sclerosis. Mult Scler Relat Disord. 2016;9 ( Suppl 1):S5-S48.
- Scolding N, Barnes D, Cader S, et al Association of British Neurologists: revised guidelines for prescribing disease-modifying treatments in multiple sclerosis Practical Neurology.2015;15:273-279.
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