Neuromuscular disorder (NMD) is a disease group consisting of rare and hereditary diseases, resulting in progressive motor function deterioration. It also often cause multi-system involvement, culminating in not only physical and psychological stress of patient and family, but burden of social care.
Our team has started working on the diagnosis, pathomechanism exploration, animal model establishment and new therapy development for NMD since 1986. We have also set up multidisciplinary care in both clinic and ward in order to provide more efficient follow up for preventing and managing complications. The integrated clinic could simultaneously serve as a bridge between patients and global clinical trials. Based on the international consensus of standard care, we started operating the integrated clinic once per week since 2011. We coordinate neurologist, cardiologist, pulmonologist, physiatrist, orthopedics, GI specialist, psychiatrist, dentist, dietician, social worker etc. to provide medical service to the patient on the same day; currently, the amount of service is around 500 person-times per year. In addition to above, we first started promoting the use of cough assist machine and non-invasive ventilator in NMD patients, which leads to the decreased frequency and stay of hospitalization due to pneumonia, and the increased successful rate of extubation. Except for internal medicine care, the collaboration with surgeons also improves the complication management, especially on correcting spine deformity and gastrostomy operation, for which the surgeons of our team have accumulated the most experience in Taiwan. We have regular scheduled meeting to discuss and update the standard care for our patients.
In addition to clinical medical care, social workers and patient mangers from patients’ associations and rare disease foundation stand by at the clinic to provide timely help for the NMD patients. The physicians and surgeons of our team also act as consultants for these associations and give educational talks in their regular activities to help the patients and families further understand their diseases and current treatment. By the above model, we communicate and collaborate with each other smoothly to execute the multidisciplinary care more efficiently for improving patients’ and families’ life quality.
Our team has worked on this field for 30 years. We have realized that general population and even general physicians do know NMD with limit. We thus integrate all medical and social resources to do standard care based on international guideline and have got great outcome as mentioned above. This result therefore brought us the NMD patients from abroad and we had the patients successfully be weaned from ventilator, had their families learn adequate care skills and finally much improved their life quality. We have shared our experience at other hospitals and schools, as well as in international conferences and journals.
The following figure is to show the process of integrated clinic:
(1) New patient can register to this integrated clinic directly
(2) For diagnosed patients’ regular follow-up, patient manager would contact them to arrange the visit to clinic. Patients would be checked by neurologist first; routine examinations would be performed and based on individualized needs, the patients would be transferred to other specialists. (red solid arrows + purple solid arrows)
(3) With some special condition, patient manager can arrange the visit to specialists directly. (purple arrow with dotted line)
(4) The social workers from patients’ associations and rare disease foundation would stand by in the clinic to provide timely help for the patients.
Admitted patients would also receive multidisciplinary care. Patient and family would understand the disease, therapeutic strategy, result of examinations, and outcome of treatment by joining the meeting with our medical team during hospitalization. Before going back home, home care team would be consulted and arrange everything necessary, including the setting of equipment, the manpower for care and the application for social resorces.