Survey
* Your assessment is very important for improving the workof artificial intelligence, which forms the content of this project
* Your assessment is very important for improving the workof artificial intelligence, which forms the content of this project
Managing an Alemtuzumab Service Gail Clayton Lead MS Clinical Nurse Specialist & Jacki Smee MS Clinical Nurse Specialist Cardiff and Vale University Health Board Aims Background on setting up Alemtuzumab service Patient selection Infusion related and long-term side-effects Ongoing monitoring requirements Potential challenges Case studies Historical perspective Consultant with special interest appointed A number of patients with highly active / aggressive MS 2001 – Helen Durham Cambridge trial 2002 – 1st patient treated in Cardiff Risk Sharing Scheme – negotiated funding with WAG to include all disease modifying therapies Setting up the service Ad hoc Limited staff knowledge No patient information MS nurse working 12 hour days - competence? No follow up and monitoring Keen to learn and develop a protocol Protocol Development Training and education Interpreting blood results Pre-treatment screening Managing the infusion Ongoing management and follow-up MDT review of the protocol A Team Approach Patient Selection MRI Disease onset Clinical relapses Cognition Family plans Risks / benefits / informed consent Alternatives Pre treatment screening and counselling Bloods Pregnancy Cervical Screening Shingles Commitment to monitoring Side effects Irradiated blood products Consent Managing Expectations So what do we do? 1. 2. 3. 4. 5. 6. 7. Identify patients Discuss at MDT Admit to Neurology Day Unit Patient information folder Buddy system In-patient prescription Take home medications In-patient prescription Infusion related side-effects Cytokine release syndrome • Rash • Headache • Transient worsening of neurological deficit • Chest tightness Information following infusion Self-management-patient information folder Dietary advice leaflet Time off work Fatigue Vaccinations Monitoring requirements Irradiated blood products Irradiated Blood Products Longer term side effects Autoimmune diseases: • • • • • • • Thyroid Disease ITP Haematology Rheumatology Dermatology Good Pastures Varicella Thyroid Disease What to look for ITP Rash Easy bleeding Bruising Platelet count↓ Other Haematology Haemolytic anaemia Neutrophilia Pancytopenia Dermatology Anti-GBM (Goodpasture’s Syndrome) Other Opportunistic infections Cancers Human Papilloma Virus Herpes Simplex Type 1 and 2 Challenges! Cancelled appointments MRI Accessing blood results DNA Monitoring to month 60 Responsive service Database Emails for patients Cost Where to go next Motivating patients to continue follow up Longer term………. Getting it right Diagnosed Aug 2006 2007 x2 2008 Apr Oct Rebif Nov 2008 2009 x2 2010 x4 Scanned 2010 new and enhancing lesions Treated Oct 2010 & 2011 Currently building houses in Nepal for a charity When all else fails Diagnosed Nov 2008 Relapses 2009 x2 Rebif Oct 2009 2010 x3 2011 x1 Natalizumab Dec 2011 2012 x4 NABs + Liaison with Cambridge 6 month washout Alemtuzumab Nov 2012 Re-scan next week Complications! Relapse at onset 2007 Diagnosed Oct 2008 Relapses 2008 x3 Alemtuzumab April 2009, 2010, 2011 Thyrotoxicosis 2010 Herpes zoster 2011 Vitiligo 2011 Athritis 2011 Psoriasis 2011 Patient comments! After my MS Campath treatment it felt like i had hit rock bottom, feeling useless, drained and fatigued in a big way. Then a few months later i felt like Superman, felt like i had been cloned. NOTHING CAN STOP ME, NOT EVEN MS ! Campath has given me my life back. Before my first infusion, life was steadily closing in. I had no room to breathe between relapses, each one leaving me weaker than before. Campath stopped MS in its tracks. I may still have the same symptoms as pre-Campath, but there has been absolutely no disease progression since last summer. A miracle? It certainly feels that way. I still get bad days, but they are more than outweighed by the good. My son is no longer frightened at the decline in my health. I am able to be fully-engaged in his life once more, a precious, priceless gift. I received my first dose of Campath in November 2012. At this time I was confined to a wheelchair because I was having relapse after relapse and was unable to walk. Before recovering from one relapse I was going into another. I now work 4 days a week in a school. I am so grateful to have been able to have this treatment, it has made such a difference giving me back quality of life. I feel myself again! Conclusions Alemtuzumab is highly effective at reducing relapses Significant side-effect profile Restrict use to more aggressive disease conventional treatments failures Absolute need to ensure robust long-term monitoring and follow-up Preceptorship Graph showing relapses pre and post Campath treatment 20 19 18 Relapses 17 Patient 1 16 Patient 2 Patient 3 15 Patient 4 14 Patient (Number 1-19) Patient 5 13 Patient 6 12 Patient 7 11 Patient 8 10 Patient 9 9 Patient 10 Patient 11 8 Patient 12 7 Patient 13 6 Patient 14 5 Patient 15 4 Patient 16 3 Patient 17 2 Patient 18 Patient 19 1 0 -1 -4000 -3500 -3000 -2500 -2000 -1500 -1000 -500 0 500 Time (Days Pre and Post Campath) 1000