PGM01
Exploring Benefits, to Both Patients and Health Care Providers, of a Dedicated Support Group for Young Adult Patients with Multiple Sclerosis
Multiple sclerosis (MS) is a chronic, life-long, unpredictable and potentially highly debilitating neurological condition. It strikes most often in young adulthood, but can start in childhood and adolescence. Young patients diagnosed in the pediatric setting, where they have close follow-up, may have difficulty transferring to adult care. Alternatively, those diagnosed at age 18 or older in the adult care setting may not have adequate support. Lack of information and support can affect these patients leading to negative outcomes. Participation in a support group, made up of patients in a similar age group, is one way for providers to obtain information about their needs and for the patients themselves to receive the support of others.
Objectives:
The purpose of this qualitative pilot study is to learn more about how young adult MS patients are managing their MS, how they perceive the level of care they are receiving, and if attending a dedicated young adult support group would provide benefit.
Methods:
The purposive, convenience sample consisted of a single group of 8 patients between the age of 18 and 25 who met monthly for 6 virtual meetings. Prior to the first meeting, patients completed a demographic sheet and one questionnaire with 6 open-ended questions. Following the 6 sessions, they will be asked to complete a final questionnaire with 5 open-ended questions to determine if there have been changes in their feelings about ability to manage their MS and if there were beneficial aspects to this group participation.
Results:
The data is being analyzed using thematic analysis. Four themes were identified from the pre-session questionnaires including problems with transfer of care (TOC), need for support, help with cognitive issues, and help on coping with the diagnosis.
Conclusions: It is postulated that the results of this study may suggest that a dedicated young adult MS support group can be beneficial in providing support, as well as knowledge about living with MS, and ultimately improve their quality of life. There is also the possibility, with feedback obtained through this study, that providers can offer improved MS care to meet the needs of this population.