In partnership with the European Association for Palliative Care (EAPC) Neurology Reference Group, we present a new weekly series where practitioners and researchers share their experiences in supporting people affected by neurological disease.
Today’s guest writer is Alessandra Solari, MD, Head of the Unit of Neuroepidemiology, Scientific Directorate, Fondazione IRCCS Istituto Neurologico Carlo Besta of Milan, Italy. She is also Coordinator of the Study Group on Bioethics and Palliative Care of the Italian Society of Neurology.
Dr Alessandra Solari
Multiple sclerosis (MS) is a chronic neurological disease affecting 2.8 million people worldwide, and is the most common cause of neurological disability in young adults in western countries.1 Around 15 per cent of MS patients have a progressive course from the outset, and a further 40 per cent develop progressive disease after 15 years with relapsing disease.2 Despite advances in disease-modifying treatment, few treatment options are currently available for people with progressive MS, who have complex physical and psychosocial needs, typically over many years.3
The European Academy of Neurology (EAN) ‘Guideline on Palliative Care in People with Severe, Progressive Multiple Sclerosis’ stems from the EAN consensus review on palliative care for patients with neurodegenerative disorders.4 This guideline has three novelties. First, in accordance with the proposed integration of neurology, palliative medicine and rehabilitation,5 it is a joint initiative of the EAN, the EAPC, and the European Network for Best Practice and Research in MS Rehabilitation (RIMS), with task force members appointed from each discipline.
Second, it has a strong patient and public involvement. One task force member was appointed by the MS International Federation (MSIF), which brings together MS organisations, people affected by MS, volunteers and staff from around the world. Moreover, the guideline clinical questions were formulated with the direct engagement of MS patients and caregivers via an international online survey (1,119 participants from seven European countries) and focus group meetings. This consultation took about a year to accomplish but it was worthwhile to identify clinical questions and outcomes that are meaningful to stakeholders.6
Third, the guideline was developed using the Grading of Recommendations Assessment, Development and Evaluation (GRADE) method.7 Where evidence was lacking for people with severe, progressive MS, the task force decided to formulate recommendations using indirect evidence or devised good practice statements.
We devised 10 clinical questions, which encompass general and specialist palliative care, advance care planning, discussion with healthcare professionals of the patient’s wish to hasten death, symptom management, multidisciplinary rehabilitation, interventions for caregivers (training programmes on caregiving; practical and/or emotional support programmes), and interventions for healthcare professionals (training in palliative care for MS professionals and training in MS care for palliative care professionals).
For these clinical questions, we formulated a total of 34 recommendations (33 weak, one strong) and seven good practice statements, which can be found in the two guideline publications, which were issued simultaneously in the EAN and EAPC journals.8, 9
Besides providing guidance to healthcare professionals involved in the care of people with severe progressive MS, this guideline identifies areas that currently lack evidence of efficacy in this population. Twenty-nine of the recommendations are on the management of spasticity and other symptoms, nevertheless the evidence on the management of fatigue and mood symptoms remains confined to relapsing MS. Other areas that lack evidence in this population include advance care planning, interventions for caregivers and healthcare professionals. Further research on the integration of palliative care and multiple sclerosis care is needed, including consideration of the various models of palliative care provision.
References
1. https://www.atlasofms.org/map/united-kingdom/epidemiology/number-of-people-with-ms (accessed on October 17, 2021).
2. Filippi M, Preziosa P, Langdon D, et al. Identifying Progression in Multiple Sclerosis: New Perspectives. Ann Neurol. 2020;88(3):438-452.
3. Lunde HMB, Assmus J, Myhr KM, et al. Survival and cause of death in multiple sclerosis: A 60-year longitudinal population study. J Neurol Neurosurg Psychiatry 2017;88:621–625.
4. Oliver DJ, Borasio GD, Caraceni A, et al. A consensus review on the development of palliative care for patients with chronic and progressive neurological disease. Eur J Neurol 2016; 23(1): 30–38.
5. Turner-Stokes L, Sykes N, Silber E, et al.: From diagnosis to death: Exploring the interface between neurology, rehabilitation and palliative care in managing people with long-term neurological conditions. Clin Med 2007;7:129–136.
6. Köpke S, Giordano A, Veronese S, et al. Patient and caregiver involvement in formulation of guideline questions: Findings from the EAN guideline on palliative care of people with severe multiple sclerosis. Eur J Neurol 2019; 26(1): 41–50.
7. Leone MA, Keindl M, Schapira AH, et al. Practical recommendations for the process of proposing, planning and writing a neurological management guideline by EAN task forces. Eur J Neurol 2015; 22(12): 1505–1510.
8. Solari A, Giordano A, Sastre-Garriga J, et al. EAN guideline on palliative care of people with severe, progressive multiple sclerosis. Eur J Neurol. 2020;27(8):1510-1529.
9. Solari A, Giordano A, Sastre-Garriga J, et al. EAN guideline on palliative care of people with severe, progressive multiple sclerosis. J Palliat Med. 2020;23(11):1426-1443.
Links and resources
- Contact Dr Solari by email and read more about her publications here.
- Follow the Palliative Care and Neurology series on the EAPC blog. The series resumes in January 2022.
- EAPC Neurology Reference Group (includes links to several useful publications and projects).
- Neurological Palliative Care: FREE webinar presented by the EAPC Neurology Reference Group, Thursday 27 January 15.00 CET. Register at https://bit.ly/3AaIDTU
SUBMIT APPLICATIONS FOR EAPC RESEARCHER AWARDS 2022 BY 31 JANUARY 2022
If you’re making an outstanding contribution to research and clinical practice in palliative care, why not apply for a 2022 EAPC Researcher Award? Apply yourself, or nominate a colleague, for this prestigious award. https://eapccongress.eu/2022/eapc-researcher-awards/
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