EAN Guidelines Endorse Early Palliative Care Dialogue in MS

Damian McNamara

September 19, 2019

STOCKHOLM — Encouraging early advanced care planning for people with severe multiple sclerosis (MS) and their families, providing options for palliative care in all available settings — including home-based services — and ensuring ongoing communication as the disease progresses are among recommendations in new European Academy of Neurology (EAN) Guidelines on Palliative Care of People With Severe MS.

"There is a huge need for palliative care among the patients and the families," Alessandra Solari, MD, a neurologist in the Unit of Neuroepidemiology, Foundation IRCCS Neurological Institute C. Besta in Milan, Italy, said here during a late breaking abstract session at the 35th Congress of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) 2019.

They are often managed in the primary care setting, she added, "and we think neurologists [also have a role] with these severely affected patients."

The benefits of palliative care in this patient population go beyond preparation. People with severe MS enrolled in palliative care report significant improvements in pain and sleep problems, for example, according to a systematic review of the literature performed by Solari and colleagues to back the recommendations.

The guidelines address 10 clinical questions surrounding discussion, implementation, and symptomatic management of MS during palliative care. Advanced care planning, general palliative care, specialist palliative care, and "discussing with healthcare professionals the wish of hastening death" are the core questions, said Solari, chair of the task force.

She focused on general palliative care and specialist palliative care recommendations here at the ECTRIMS Congress 2019. The recommendations are based on an intent-to-treat, individual participant data meta-analysis. Solari previously presented different aspects of the new guidelines, including pain management and caregiver burden, as reported by Medscape Medical News.

People with severe MS should be offered home-based palliative care, either by healthcare professionals with good palliative care skills and knowledge (ie, general physicians) or a multiprofessional team of primary care specialists, the guidelines note.

In addition, people with severe MS should be offered inpatient or outpatient options as well. Patient preferences, living conditions, and availability of services should be taken into account.

A Call for Continuous Communication

Guideline recommendations regarding advance care planning include early discussion of the future. "Advance care planning should be offered to patients, especially when impaired communication and cognition may develop as part of MS progression," Solari said.

The guidelines also call for regular communication about the future progression of MS with patients and families or caregivers.

Furthermore, "MS patients should be encouraged to discuss their wishes about future care, including the restriction of treatment/interventions and the wish for hastened death," Solari said.

The guideline authors caution that healthcare professionals should be aware of the risk factors for the wish for hastened death — including depression, isolation, and/or restricted abilities — and encourage the discussion and appropriate management of these issues.

The systematic review included 10 publications. This evidence included three randomized controlled trials and one qualitative study of patients with severe MS and their caregivers. The randomized controlled trials focused on home-based palliative care, with study durations ranging from 12 to 24 weeks. The research included comparisons between general or specialist palliative care vs usual care.

The analysis included 146 severely affected MS patients and 137 of their caregivers. All participants had an Expanded Disability Status Scale (EDSS) score of 6.5 or greater.

The randomized controlled trial researchers assessed eight outcomes. They found palliative care was statistically superior to usual care for pain (regression coefficient [RC], –9.8; 95% confidence interval [CI], –18.8 to –0.8) and sleeping problems (RC, –9.9; 95% CI, –31.5 to –3.2). They also found a reduction in caregiver burden in a per-protocol analysis, but for specialist palliative care only (RC, –8.2; 95% CI, –15.9 to –0.5).

No significant differences emerged in terms of shortness of breath, bladder problems, bowel problems, anxiety, or depression.

Neurologists and palliative care experts as well as patient and caregiver representatives from seven European countries provided input to the guidelines in focus groups and an online survey with more than 1000 respondents.

Additional palliative care recommendations address a need for multidisciplinary rehabilitation, education, and training programs for caregivers of people with severe MS, as well as inclusion of the principles of palliative care in the education and training of neurologists and others involved in MS care.

The guidelines were a collaborative effort of the EAN, the European Association for Palliative Care, and the Rehabilitation in Multiple Sclerosis (RIMS) network. Multiple groups endorsed the recommendations, including ECTRIMS and the MS International Federation.

Solari noted that the recommendations regarding symptomatic management are forthcoming.

A weak level of evidence in the literature for most of the recommendations is a potential limitation of the guidelines. The authors relied on expert consensus in many instances.

Potential to Provide Palliative Care to More People

"As an MS specialist, I usually have more time. I ask patients how they are taking care of themselves and their disease," Maya M. Zeineddine, a specialist at the Nehme and Therese Tohme Multiple Sclerosis Center of the American University of Beirut in Lebanon, told Medscape Medical News when asked to comment. "We talk to patients and families about quality of life."

Asked when she generally discusses palliative care services with patients, she replied, "It depends on the level of disability. I am most likely to discuss this with patients who have advanced MS or higher EDSS scores."

Zeineddine recommended first asking people with severe MS whether they know their prognosis and disability level — before broaching the topic of palliative care.

Even though "most of the data was weak and there were few studies, it was important that these experts got together," Tobias Derfuss, MD, research group leader, Departments of Neurology and Biomedicine, University Hospital Basel in Switzerland, told Medscape Medical News when also asked to comment on the guidelines.

"These are important guidelines that show benefit," he said.

"These guidelines are especially important for politicians and policy makers," added Derfuss, who is also ECTRIMS treasurer. Palliative care is underutilized in many European countries and payers are not always convinced of the need for it, he noted. It is not as big of an issue in Switzerland, he said, "but in Eastern European countries it can be different."

Solari received grants from the Italian MS Foundation and the EAN during the conduct of the study and received personal fees from Almirall, Excemed, Genzyme, Merck Serono, and Teva outside the submitted work. She also serves as board member for Merck Serono and Novartis. Derfuss received speaker fees, research support, travel support, and/or served on advisory boards or steering committees of Novartis Pharma, Merck, Biogen, Teva, Bayer-Schering, GeNeuro, Mitsubishi Pharma, MedDay, Roche, and Genzyme; he received research support from Biogen, Novartis, the Swiss National Research Foundation, University of Basel and the Swiss MS Society. Zeineddine has disclosed no relevant financial relationships.

35th Congress of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) 2019: Abstract 337. Presented September 13, 2019.

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