Multidisciplinary Clinic for Complex Neurological Disorders
By Robert G. Miller, M.D., director, Forbes Norris MDA/ALS Research and Treatment Center
Multidisciplinary Norris Center staff. Top L-R: Cheryl Patterson, R.D; Jonathan Katz, M.D; Shelley McCoy, B.S; Robert Miller, M.D; Amy Butler, OTR/L; Susan Woolley, Ph.D; Michelle Mendoza, P.T. Bottom L-R: Marguerite Engel; Bob Osborn, R.N; Roberta Zucker, LCSW; Dee Holden Norris, R.N; Lee Guion, M.A; Dallas Forshew, R.N., BSN; Thais Zayas-Bazan, B.A; missing: Amy Roman, M.S.
Specialized multidisciplinary clinics have emerged for managing complex neurological disorders, where a comprehensive rehabilitation treatment evaluation is needed (1,2). These specialized clinics, for managing patients with ALS and muscular dystrophy, among other disorders, have increased throughout the U.S. Until recently, it was entirely unclear whether specialized clinics improved patient outcomes. This article reviews evidence suggesting a major impact.
Comprehensive Patient Care
In ALS multidisciplinary clinics, patients receive comprehensive care from a team of specialists at one location. The team usually includes a neurologist, pulmonologist, gastroenterologist, rehabilitation medicine physician, social worker, occupational therapist, speech therapist, respiratory therapist, specialized nurse case manager, physical therapist, dietitian, psychologist, and palliative care expert (1, 2). The entire spectrum of care is available from the expert team. Multidisciplinary clinics coordinate care and interface with the primary care physician, local neurologist, and community-based services. Patients who participate in multidisciplinary ALS clinics are younger and have longer symptom duration than patients who seek care at a neurology clinic, indicating possible referral bias (5). Studies suggest that even in tertiary care centers, there are varying degrees of adherence to the evidence-based American Academy of Neurology (AAN) practice parameters (3,4).
Patient care and survival data were examined for 97 patients who received care at specialized ALS clinics in Italy compared with 124 patients seen in neurology clinics (6). There was increased utilization of evidence-based treatments in the multidisciplinary ALS clinics, resulting in fewer hospital admissions. Treatments included prescribed
Riluzole, slowing disease progression; percutaneous endoscopic gastrostomy (PEG), maintaining nutritional status; and noninvasive ventilation (NIV), as a breathing aid. Mean survival was longer for patients seen in specialized ALS clinics (1,080 days vs 775 days, p=0.008). Using the COX multivariate analysis, being seen at a multidisciplinary ALS clinic independently predicted longer survival.
Prolonged survival (7.5 months, p<0.0001) was also found for patients in Ireland attending multidisciplinary ALS clinics (7). Patients at specialized ALS clinics were more likely to receive Riluzole (99% vs. 61%). Multidisciplinary care was an independent predictor of survival (p=0.02) and reduced the risk of death by 47% in a five-year Dutch study (8). Patients in multidisciplinary ALS clinics (n=133) were compared with 75 patients receiving general care (11). Patients in multidisciplinary clinics received more aids and appliances (93% vs. 81%, p =0.008) and had a better quality of life (SF-36® Health Survey, p <0.01). Beneficial effects derived from a single visit to a multidisciplinary clinic, suggested better coordination of care. Importantly, patients attending multidisciplinary clinics had fewer hospital admissions and shorter inpatient stays than those receiving community-based care.
By contrast, another study documented no increased survival from multidisciplinary clinic (9) use. Riluzole use was higher in multidisciplinary clinics (61% vs 43%, p _ 0.02), but very few patients received PEG (6% vs 2%) or NIV (2% in each group). There was no significant (10%) survival increase in patients seen at a multidisciplinary clinic after 12 months. Low treatment utilization may account for the lack of survival benefit in this study.
Three studies show that multidisciplinary clinics specializing in ALS care are probably effective in several ways: increased use of adaptive equipment; increased utilization of riluzole, PEG, and NIV; improved quality of life; and lengthened survival. But one study with low treatment use found no increased survival benefit.
Specialized multidisciplinary clinic referral should be considered for patients with ALS and other complex disabling neuromuscular diseases to optimize health care delivery, prolong survival, and probably also to enhance quality of life. Effective channels of communication and coordination are essential among the hospital-based multidisciplinary clinic team, the primary health care sector, the palliative care team, and the community services. These findings underscore the concept that ALS and other disabling diseases are not generally curable, but there are treatments that make a difference for patients and families. These recent studies show that these evidence-based treatment options are under-utilized outside the multidisciplinary environment and a much higher utilization rate is found in multidisciplinary clinics (4).
- The EFNS Task Force on Diagnosis and Management of Amyotrophic Lateral Sclerosis: Andersen PM, Abrahams S, Borasio GD, de Carvalho M, Chio A, Van Damme P, Hardiman O, Kollewe K, Morrison KE, Petri S, Pradat PF, Silani V, Tomik B, Wasner M, Weber M. EFNS guidelines on the Clinical Management of Amyotrophic Lateral Sclerosis (MALS) – revised report of an EFNS task force. Eur J Neurol. 2011 Sep 14. doi:10.1111/j.1468-1331.2011.03501.x. [Epub ahead of print]
- Miller RG, Jackson CE, Kasarskis EJ, England JD, Forshew D, Johnston W, Kalra S, Katz JS, Mitsumoto H, Rosenfeld J, Shoesmith C, Strong MJ, Woolley SC. Quality Standards Subcommittee of the American Academy of Neurology. Practice parameter update: The care of the patient with amyotrophic lateral sclerosis: multidisciplinary care, symptom management, and cognitive/behavioral impairment (an evidence-based review): report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology. 2009 Oct 13;73(15):1227-33. Review.
- Bradley WG, Anderson F, Gowda N, Miller RG. Changes in the management of ALS since the publication of the AAN ALS practice parameter 1999. Amyotroph Lateral Scler Other Motor Neuron Disord 2004;5:240 –244.
- Miller RG, Anderson F, Brooks BR, Mitsumoto H, Bradley WG, Ringel SP. ALS CARE Study Group. Outcomes research in amyotrophic lateral sclerosis: lessons learned from the amyotrophic lateral sclerosis clinical assessment, research, and education database, Ann Neurol. 2009 Jan;65 Suppl 1:S24-8.
- Sorenson EJ, Mandrekar J, Crum B, Stevens JC. Effect of referral bias on assessing survival in ALS. Neurology 2007;68:600–602.
- Chio A, Bottacchi E, Buffa C, Mutani R, Mora G. Positive effects of tertiary centers for amyotrophic lateral sclerosis on outcome and use of hospital facilities. J Neurol Neurosurg Psychiatry 2006;77:948 –950.
- Traynor BJ, Alexander M, Corr B, Frost E, Hardiman O. Effects of a multidisciplinary ALS clinic on survival. J Neurol Neurosurg Psychiatry 2003;74:1258 –1261.
- Van den Berg JP, Kalmijn S, Lindeman E, et al. Multidisciplinary ALS care improves quality of life in patients with ALS. Neurology 2005;65:1264 –1267.
- Zoccolella S, Beghi E, Palagano G, et al. ALS multidisciplinary clinic and survival: Results from a population-based study in Southern Italy. J Neurol 2007;254:1107–1112.