Multiple Sclerosis at Home Access (MAHA): Care into Communitiy
While great strides have been made in the treatment of relapsing forms of multiple sclerosis (MS), many individuals have or will enter a progressive phase of this disease. Over 30% of these individuals will have substantial and, in some cases, profound disability. Progressive MS is a chronic, dynamic, highly complex, debilitating health condition for individuals, families as well as for the primary and specialty providers caring for them. Advancing disability predisposes individuals to life-threatening medical complications, poor quality of life and heavy caregiver burden. Patients and families face enormous challenges in accessing, coordinating, managing, and financing their healthcare. Due to multifocal neurological deficits, problems related to progressive MS are dynamic and highly complex. The progressive phase of MS meets the description of a “consuming illness” outlined by the Patient-Centered Medical Home Model (PCMH). New and innovative models for Care delivery for these these indivuals are needed.
Objectives: present preliminary results and lessons learned over 2 years of a house call program implemented at the University of Nebraska/Nebraska Medicine MS Clinic currently serving 21 indivuals with progressive MS, EDSS greater than or equal to 7.5
Methods: January of 2014 a model of care designed to address specific needs of individuals with progressive MS and their caregivers was implimented. This initiative incorporated core principles of the chronic care and patient-centered medical home models, defined processes replicate methods used in well researched effective models of home based care in other populations with functional deficits. Regular house calls were made by providers and included a multidisiplinary team to reduce struggles that disabled patients face in accessing care. Enhanced competency, coordination, communication (including telehealth conferences), continuity of multidisciplinary providers, collaboration with primary and specialty care providers was integrated . A "Comprehensivist" a provider with training in primary care and strong MS subspecialty care was used to integrate and coordinate care . Quality, cost and patient satisfaction indicators were identified and collected by retrospective chart review and prospective data collection.
Results: Initial results suggest reduced hospital days, cost avoidance, and improved patient satisfaction. Lessons learned were many and support the Wagner's Chronic Illness Model framework.
Conclusions: Preliminary trends show decreased hospital days, cost avoidance and improved satisfaction, important system's integration and support is critical for success.