What Factors Influence Changes in MS Management? Comparing the Perspectives of Patients and Health Care Providers Using Nominal Group Technique
Objectives: To compare factors that may influence changes in the management of multiple sclerosis (MS) between patients with MS and health care providers.
Methods: We conducted 4 structured focus groups with patients and providers using Nominal Group Technique in Colorado and Georgia. Patients were asked “What factors would make you change how you manage your MS?” Providers were asked “What factors would make you decide to change how you manage your patient’s MS?” Responses were shared among group members, consolidated, and ranked. Weights were assigned and scores summed to develop a prioritized list for each meeting.
Results: 15 patients with MS (87% female, 60% white) and 15 providers with subspecialty training in MS (40% MD/DO, 47% PA, 13% NP) participated. On average, patient groups generated 28 unique responses; provider groups generated 31. The most important factor for patients was the ability to manage loss of physical and mental function, followed by development of new or worsening symptoms, ability to pay, and availability of new or better treatments. The most important factors for providers were new MRI activity, progression of disability, poor tolerability, patient response to current treatment, and relapses. There were a number of factors prioritized exclusively by one group. Only providers prioritized concerns about safety, adverse events, and non-adherence, while only patients prioritized awareness of holistic approaches, availability of resources, and inconvenience. While both groups prioritized new or worsening symptoms, patients further distinguished between symptoms they perceived as being manageable versus non manageable. Similar concepts were sometimes expressed using different terms. For example, patients mentioned ‘family issues’ while providers mentioned ‘caregiver burden.’
A number of factors influence changes in MS management. There are some similarities and some differences between the factors that would lead patients and providers to change how MS is managed. Patients prioritized symptoms, function, and holistic approaches, whereas providers prioritized MRI findings and side-effects. Patients and providers often articulated similar concepts differently, suggesting a need for tools to bridge communication gaps in discussions about changing MS treatment.
Study supported by Biogen.