|Multiple Sclerosis Neuroimmunology Clinic members. L-R: Robb Wesselingh, |
Kelly Glekas, Anneke van der Walt, Mastura Monif, Helmut Butzkueven,
Louise Rath, Olga Skibina, Janene Richards, Cassie Nesbitt
Multiple Sclerosis (MS) is an autoimmune disease of the central nervous system that attacks the myelin sheath covering nerves. It can be detected on MRI scans as lesions present in the brain and spinal cord. It is a disease that is chronic, so treatment is required on an ongoing basis to prevent relapses or flares.
During 2020's COVID-19 lockdowns this proved to be a challenge, but one which the Monash-Alfred Health Multiple Sclerosis Neuroimmunology (MSNI) Clinic team met.
An emerging trend in the treatment of patients with MS is the prescription of monoclonal antibodies, laboratory-produced molecules that complement the body’s own immune system. They are highly effective disease-modifying therapies that reduce relapse and disability progression. However, delivering a monoclonal antibody therapy, such as Ocrevus or Tysabri, is not quick or simple. Patients receive an intravenous infusion on an ongoing basis through a trained outpatient service, which in most cases provided by tertiary hospitals.
Patients are given an appointment time as the centre requires careful management and resources to be available and to ensure it can accommodate the necessary demand. The average time commitment for a patient ranges from 3.5 - 5.5 hours which includes preparation of the therapy through the pharmacy, administration, and post-infusion observation period.
Infusion protocols can be strict and put a toll on some patients, particularly those who are working or have carer duties such as young women. The disease is skewed towards women, who are three times more likely to develop MS than men, and it is also young women of childbearing age that are most commonly affected by MS.
Associate Professor Anneke van der Walt, Director of the MSNI Clinic, Alfred Brain, Alfred Health, and a group research leader in The Department of Neuroscience, Central Clinical School, Monash University in collaboration with Mr Julian Ellis, an Alfred Hospital pharmacist for patients, members of the MSNI clinic and researchers in the MSNI research groups at Monash University, set out to explore what the preferences of patients with MS were at the hospital infusion service.
Alfred Health has strong commitment to providing the best patient care by partnering with patients and families to achieve the best health outcomes. It strongly encourages patients to get involved in the planning and decisions for their care in line with published evidence that shows improvements in the quality of care.
Ms Louise Rath, Nurse Consultant for the MSNI clinic at Alfred Health has a keen interest in and is a champion of the importance of the patient experience as a central part of care provision. Her curiosity in the Alfred Health model of patient care led her to explore this in their own unit. She said, “We were particularly interested to know if patients could choose, when would they come in? And where would they like to have their infusion?”
They found that a surprising 60% of patients would prefer to have a home-based infusion and to have their infusion administered mid morning rather than really early in the morning before starting work (Rath et al, 2020). The time preference was strongly predicted by age, with patients younger than 30 years least likely to request treatment before 8am but patients 50 years and older the most likely. Louise said, “So when we looked at what factors influenced patients’ preferences, we found that childcare requirements and employment / study commitments were major contributors preventing a patient-focused infusion service.”
Routine care for patients with MS became scarce as a result of the COVID-19 pandemic last year with lockdowns, quarantine periods and social distancing. In mid-March the MSNI clinic found themselves faced with the infusion service being shut down, so they had to consider how they would go about delivering infusions to more than 1000 patients and keep them safe at the same time. There were three possible solutions: change the intervals between infusions; change the speed/rate of infusion; change the location of infusions. Each carried their own challenges.
They decided to reduce the time the patient needed to be in the infusion centre by applying a rapid infusion protocol in a selected group of patients. On average, the time was reduced by 1 to 1.5 hours, depending on the monoclonal antibody therapy. They found this to be safe, allowing ongoing treatment to continue and a reduction in the resources needed by the hospital (Rath et al, 2021). Infusion related reactions were experienced by only ten patients, were mild to moderate and did not result in any discontinuation of treatment.
Associate Professor van der Walt commented that “there is a well known saying in healthcare that ‘everyone wants to innovate, nobody likes to change’, and change is generally quite slow. But in our case, this really was not true and we saw an enormous change in the way we deliver healthcare. Any of these changes will persist to the benefit of our patients and healthcare workers, so it is important that we maximise the benefits whilst balancing the risks with these benefits.”
Professor Helmut Butzkueven, CCS's Head of Department of Neuroscience, said, "I am very proud of this achievement of the MSNI Service, which provided safe service continuity in the hardest days of COVID in Victoria, and is very popular with the patients, saving everyone time and money safely!"
- Professor Anneke van der Walt was one of four panellists discussing the clinical impacts of the COVID-19 pandemic on health care delivery: see video
- Rath L, Campagna M, Stankovich J, Ellis J, Jokubaitis V, McCarthy D, Nesbitt C, Yeh W, Zhong M, Wesselingh R, Monif M, Richards J, Minh V, Skibina O, Butzkueven H, van der Walt A; Assessing Patient Preference: Preferred Time and Location of Infusible Therapies in Multiple Sclerosis and Neuroimmunologic Disorders. Int J MS Care 2020; doi.org/10.7224/1537-2073.2020-075
- Rath L, Bui MV, Ellis J, Carey J, Baker J, Taylor L, Fernando H, Taylor N, Savage P, Richards J, Zhong M, Kalincik T, Skibina O, Wesselingh R, Nguyen AL, Monif M, Butzkueven H, van der Walt A. Fast and safe: Optimising multiple sclerosis infusions during COVID-19 pandemic. Mult Scler Relat Disord. 2021 Jan;47:102642. doi.org/10.1016/j.msard.2020.102642. Epub 2020 Dec 1. PMID: 33321356.