We're in It Together: A Participative, Shared Decision-Making Approach to Supporting Patients and Families Considering Alemtuzumab Treatment Initiation
Starting a new disease modifying therapy can be a stressful experience for MS patients and their family members. This is particularly salient for some of the second-line disease modifying therapies such as Alemtuzumab, given the risk/benefit profile of this therapy and the necessity of long-term follow-up.
To ensure informed consent in patients with MS considering Alemtuzumab initiation.
A participative, shared decision-making model was used to provide information and support to patients and families contemplating treatment initiation with Alemtuzumab. A MS Neurology Fellow, an MS Nurse Clinician, and a nurse from a patient support program developed monthly bilingual group teaching sessions for this group of MS patients and their families. Active group participation was encouraged during the sessions, which addressed treatment risks and benefits, medical screening and insurance authorization requirements, what to expect on a typical infusion day and the importance of adherence to long-term follow-up. A patient currently treated with Alemtuzumab was present at each session to share his/her experiences. The team has conducted 9 sessions to date, with a total of 31 patients and 25 family members in attendance.
Patients attending the sessions reported feeling well supported by the team, having a better understanding of the therapy, and an increased confidence in their treatment decision-making ability. Family members also reported increased knowledge of the treatment and a desire to support their loved one in making a treatment choice. MS practitioners have seen a reduction in the time required to address questions about Alemtuzumab during clinic visits, as the sessions have provided a protected and welcoming learning environment for patients and families to address their questions and concerns about treatment initiation.
A participative shared-decision making model of group learning can lead to positive outcomes for patients and families during the MS treatment initiation process. Future directions include a need to: (1) further evaluate the factors impacting treatment decision-making, so that practitioners may better support patients and families, and (2) expand the group teaching model to other MS therapies and health promotion issues for this clientele.