Pediatric MS, defined as onset before the age of 18, is estimated to occur in over 8,000 children in the United States with increasing incidence and prevalence worldwide. Despite having numerous medications and services available to MS patients, there continues to be little data on quality of life in pediatric MS, its impact on their families, and how best to transition these patients into adulthood.
We sought to understand the perceptions of quality of life in pediatric MS patients as they transition into adulthood. The objective of this study is to better understand the priorities and concerns of the pediatric MS patient population as they enter the transitional stage of their life, in order to optimize care and implement appropriate interventions for their overall healthcare.
Using qualitative methods, we conducted in-depth semi-structured interviews. We sampled pediatric onset MS patients between the ages of 15-26 from a pediatric subspecialty practice. We recruited participants until reaching thematic saturation after 17 interviews. We identified themes using immersion/crystallization.
We identified four major themes: (1) Patients needed time to accept their diagnosis and adjust to a life with MS. (2) Quality of life was most impacted by physical symptoms affecting activities of daily living (ADLs). (3) A positive outlook, family support, and resilient attitude provided a sense of control that enhanced participants perceived quality of life. (4) Barriers to disease management and transition readiness included lack of knowledge of available social services, limited self-management, and delay in transition. However, some aspects were also counterproductive in slowing down maturation and hindering transition. On the other hand, many were able to experience posttraumatic growth leading to new levels of personal success. Timing was also critical, as discussions too early or too late could also be problematic.
Autonomy in disease management, adequate control of physical symptoms and sufficient support impacted perceptions of quality of life. A dedicated transition visit including the patient and parents should be incorporated early in adolescence to provide appropriate anticipatory guidance regarding available services, independent medical management, and continuity of care.