Developing multidisciplinary clinics for neuromuscular care and research

Abstract

Multidisciplinary care is considered the standard of care for both adult and pediatric neuromuscular disorders and has been associated with improved quality of life, resource utilization, and health outcomes. Multidisciplinary care is delivered in multidisciplinary clinics that coordinate care across multiple specialties by reducing travel burden and streamlining care. In addition, the multidisciplinary care setting facilitates the integration of clinical research, patient advocacy, and care innovation (e.g., telehealth). Yet, multidisciplinary care requires substantial commitment of staff time and resources. We calculated personnel costs in our ALS clinic in 2015 and found an average cost per patient visit of $580, of which only 45% was covered by insurance reimbursement. In this review, we will describe classic and emerging concepts in multidisciplinary care models for adult and pediatric neuromuscular disease. We will then explore the financial impact of multidisciplinary care with emphasis on sustainability and metrics to demonstrate quality and value. Muscle Nerve 56: 848-858, 2017.

Keywords: advocacy; disease outcomes; genetics; healthcare costs; multidisciplinary care; telehealth.

Figure 1

Framework for assessing the impact of multidisciplinary care in neuromuscular medicine.

Figure 2

Multidisciplinary network of care for people with neuromuscular disease. Abbreviations: MD, medical doctor; NM, neuromuscular; NP, nurse practitioner; PT, physical therapist; OT, occupational therapist; RN, registered nurse; RT, respiratory therapist; SLP, speech and language pathologist; SW, social worker.

Figure 3

Age distribution of patients seen at the Massachusetts General Hospital pediatric multidisciplinary neuromuscular clinic in 2015. Emerging opportunities, such as newborn screening programs and disease‐modifying treatments, are likely to impact the age distribution of pediatric neuromuscular patients in the near future.

Figure 4

Time study of nursing activities in a multidisciplinary ALS clinic. Data on nursing staff efforts to support 3 physicians whose cumulative FTE is 0.2 (i.e., 1 clinic per week) were prospectively collected over a 2‐week period. Nursing staff spent 80 hours over a 2‐week period caring for 85 individual patients. The distribution of direct patient care and coordination of care is shown on the left. The modality of care (in‐person vs. non–in‐person activities are shown on the right).