A Patient Not Responding to Treatment - lessons and improvements - - PowerPoint PPT Presentation

A Patient Not Responding to Treatment - lessons and improvements

Naveed Ghaus Consultant Neurologist Pinderfields Hospital, Wakefield

A Patient Not Responding to Treatment

• Aims:
• Review management of a deceased patient with

advanced MS in detail

• Identify areas of improvement in the management of such

difficult to manage patients

• Share the findings within local and regional CPD meetings
• Implement changes to improve MS care

A Patient Not Responding to Treatment

• ML, male, b1985
• Age 19y

– 2005 slurred speech, right hemiparesis and hemi-sensory loss, hemianopia. – Ataxia & vertigo 2007 – 2010 stable, no relapses over 2-3 y – (Cognitive decline since 2007) – Aug 2013 ataxia, R hemiparesis, – Jul 2014 leg weakness, summer 2015 leg weakness

• Nov 2016: EDSS 5.0 (p3, c2,bs0,s2, b/b2, c2, v2)

– copaxone

A Patient Not Responding to Treatment

• Jan 2017 JC virus +ve 3.37
• Mar 2017 dysphagia, dysarthria, paraplegia (R>L)
• Admission-Mar 2017- Jun 2017
• Lemtrada (alumtuzumab) Apr 2017
• May 2017 dysphagia, right leg weakness
• Aug 2017- mobilised with elbow crutches, word finding difficulties, memory

impairment

• October 2017 – admitted with general deterioration. Worsening mobility around

home, significant deterioration in speech, slurring and incontinent of urine.

– MRI 10/11/17 – areas of increased signal in brain and spinal cord. – 14/11/17 – CSF virology incl JCV- not detected

• EEG – slow activity left hemisphere, no epileptiform activity

A Patient Not Responding to Treatment

• Worsening spasticity in upper limbs,
• Nov 2017 – Repeat LP: JCV PCR +ve- WBC 10, RBC 4, Protein 0.5, glucose 5.1,

ser glucose 6.4

• Dec 2017 – plasmapheresis ,3 sessions. Attempted 4th--

blood clotting in the machine

• ‘Frontal lesions suspicious, may need biopsy, very active

disease, not typical of PML, but could be. If PML excluded may benefit from next dose of Alemtuzumab being brought

• forward. Otherwise needs cyclophosphamide’.

A Patient Not Responding to Treatment

• Jan 2018 CSF – No JCV. No virology detected
• Discussion with virology consultant– happy to call

negative test for JCV given as 2 subsequent samples negative

• Jan 2018 – Brain CNS MDT for ?biopsy – Outcome: not convinced that a

biopsy is likely to change management significantly.

• Family felt that treating for MS would be best option rather

than biopsy

A Patient Not Responding to Treatment

A Patient Not Responding to Treatment

A Patient Not Responding to Treatment

A Patient Not Responding to Treatment

A Patient Not Responding to Treatment

A Patient Not Responding to Treatment

• Jan/Feb 2018: Alumtuzumab
• Smiling, moving limbs on request, increased tone,

needing hoist, eating & drinking well

• Discharge planning issues
• Recurrent UTIs
• Urinary catheter problems, suprapubic inserted
• Mar 2018: discharged to Nursing Home & re-admitted for

?seizure

A Patient Not Responding to Treatment

• Apr 2018: Botox for arm dystonia, later for urinary bladder
• Safeguarding & DOLS
• May 2018: PEG referral
• Recurrent infections
• Progressive worsening, quadreparesis, no speech, rare

smile to family

• Jul 2018: symptomatic treatment
• Palliative care team & discharge to Nursing Home

A Patient Not Responding to Treatment

• 23 Jul 2018: Discharged
• 29 July 2018: RIP

• Outcome of the project:
• The details were discussed within the local MS Nurse

Specialist Team and CPD Meetings

• It was identified that there was difficulty with compliance
• n patient’s behalf and also Trust’s own efforts to keep the

patient fully engaged with the management process were not successful

• Outcomes of the project (cont’d):
• The clinical management towards the end was partly by

the General Neurology colleagues because of retirement

• f the Specialist Consultant.
• It was identified by the Trust management that MS care is

highly specialised and needs involvement of a Specialist rather than a General Neurologist.

A Patient Not Responding to Treatment

• Changes after the project:
• The Trust has successfully made a new appointment of a

Consultant with special interest in MS.

• The details were presented at the regional Neurology CPD

meeting for awareness, prevention and management of any similar issues.

• The regional CPD meeting recommended to report cases of

worsening after alumtuzumab treatment as there have been an anecdotal incidences of such cases.

• Changes after the project: (cont’d)
• Additional checks have beenplanned for the future

especially for ‘DNA’ in clinics

Thanks