Demo Patient Continuity of Care Document


          Problems
          Active problems for this patient include amyotrophic lateral sclerosis (G12.21, diagnosed May 2023) as the primary diagnosis. Secondary problems related to ALS progression include dysphagia (R13.10, onset September 2023) requiring dietary modifications, dysarthria (R47.1, onset August 2023) with progressive impact on communication, dyspnea (R06.00, onset November 2023) now requiring nocturnal BiPAP support, generalized fatigue (R53.83), and major depressive disorder (F32.9) being managed with medication and counseling. The disease course has been consistent with limb-onset ALS with progression over approximately 18 months.



      
        
          
          
          Medications
          Disease-modifying therapy includes riluzole 50 mg orally twice daily (started June 2023) and edaravone 60 mg IV daily on alternating 14-day cycles (started July 2023). Symptom-management medications: baclofen 10 mg three times daily for spasticity, trazodone 50 mg at bedtime for sleep and depression, tizanidine 4 mg three times daily as needed for additional spasticity, cholecalciferol (vitamin D3) 1000 IU daily, and lorazepam 0.5 mg every 6 hours as needed for anxiety and dyspnea. Patient reports good adherence to scheduled medications.
          
            
              
              
              
              
                
              
              
              
              
                
                  
                    
                  
                
              
            
          
          
            
              
              
              
              
              
                
                  
                    
                  
                
              
            
          
          
            
              
              
              
              
              
                
                  
                    
                  
                
              
            
          
        

      

      
        
          
          
          Vital Signs
          Most recent vital signs from 15-Apr-2024 visit: blood pressure 122/78 mmHg, heart rate 76 bpm, respiratory rate 18, weight 58.2 kg (down from 64 kg three months ago - 9 percent loss), oxygen saturation 96 percent on room air, forced vital capacity 62 percent predicted (down from 78 percent three months ago).
          
            
              
              
              
                
                  
                  
                  
                  
                
              
              
                
                  
                  
                  
                  
                
              
              
                
                  
                  
                  
                  
                
              
              
                
                  
                  
                  
                  
                
              
            
          
        

      

      
        
          
          
          Allergies
          Drug allergies: penicillin (high severity, causes rash and hives, identified June 1985); sulfa medications (moderate severity, causes gastrointestinal upset, identified March 1992). Environmental allergy: latex (low severity, causes contact dermatitis, identified August 2010). No known food allergies.
          
            
              
              
              
                
                  
                  
                  
                  
                    
                      
                        
                      
                    
                  
                
              
            
          
        

      

      
        
          
          
          Immunizations
          Influenza quadrivalent injectable, 0.5 mL IM left deltoid on 5-Oct-2023 (lot FLU2023-A1234). COVID-19 mRNA bivalent booster, 0.5 mL IM right deltoid on 15-Sep-2023 (lot COV2023-B7891). Pneumococcal conjugate PCV13, 0.5 mL IM left deltoid on 1-Jun-2023 (lot PNE2023-C4456). Tdap, 0.5 mL IM right deltoid on 15-Nov-2022 (lot TDP2022-D2278).
          
            
              
              
              
              
              
              
                
                  
                    
                    FLU2023-A1234
                  
                
              
            
          
        

      

      
        
          
          
          Procedures
          Diagnostic procedures: electromyography on 25-Apr-2023 demonstrating widespread denervation consistent with motor neuron disease; MRI brain without contrast on 2-May-2023 demonstrating no structural lesion. Therapeutic procedures: BiPAP initiation on 1-Dec-2023 with IPAP 14, EPAP 6 for nocturnal hypoventilation; percutaneous endoscopic gastrostomy tube placement on 11-Jan-2024 without complication.
          
            
              
              
                
              
              
              
            
          
        

      

      
        
          
          
          Laboratory Results
          Comprehensive metabolic panel (10-Apr-2024): sodium 139 mmol/L, potassium 4.1 mmol/L, chloride 102 mmol/L, CO2 26 mmol/L, BUN 14 mg/dL, creatinine 0.6 mg/dL, glucose 96 mg/dL. Hemoglobin 12.8 g/dL. TSH 2.1 mIU/L. 25-OH vitamin D 38 ng/mL. All values within normal limits or therapeutic targets.
          
            
              
              
              
              
                
                  
                  
                  
                  
                
              
              
                
                  
                  
                  
                  
                
              
            
          
        

      

      
        
          
          
          Encounters
          Initial neurology consultation 12-Apr-2023 for muscle weakness evaluation. First multidisciplinary ALS clinic visit 20-Aug-2023 following diagnosis. Inpatient hospitalization 10-Jan-2024 to 13-Jan-2024 for PEG tube placement. Most recent MDC follow-up 15-Apr-2024.
        

      

      
        
          
          
          Plan of Care
          Multidisciplinary ALS care plan with quarterly visits coordinating neurology, pulmonology, nutrition, physical therapy, occupational therapy, speech-language pathology, social work, and palliative care. Diagnosis: clinically probable ALS by Awaji-Shima criteria, limb-onset (right arm), with secondary bulbar involvement at month 9. Family history: no known family history of ALS, MND, or FTD. C9orf72 testing: negative. Most recent ALSFRS-R total: 32 / 48 (bulbar 8, fine motor 6, gross motor 9, respiratory 9). ECAS administered at last visit: total 108 / 136 (ALS-specific 75, non-ALS-specific 33). No frontotemporal involvement noted. FVC: 62% predicted (down from 78% predicted three months ago). Started riluzole on 2023-06-01, tolerated well. Started edaravone on 2023-09-10. BiPAP (Trilogy 100) initiated on 2023-12-01 for nocturnal hypoventilation; transitioning to daytime use given ongoing FVC decline. CoughAssist (mechanical insufflator-exsufflator) added 2024-02-15 with twice-daily use. Suction machine and portable oxygen concentrator ordered through DME. PEG tube placed on 2024-01-11 without complication; using Joey feeding pump for overnight supplemental nutrition. AAC eval completed by SLP on 2024-03-20; trialing Tobii Dynavox with eye-gaze input prior to device prescription. PT consult for power wheelchair fitting scheduled for 2024-05-02; tilt-in-space and head-array control under evaluation. Hospital bed with alternating-pressure mattress, Hoyer lift, shower chair, and grab bars added to home DME order through OT consult. Continue current disease-modifying therapy and symptom management. Patient goals: maintain functional independence as long as possible through adaptive equipment and home modifications; manage symptoms (spasticity, sialorrhea, dysphagia, fatigue) to optimize quality of life; complete advance care planning including MOLST and discussion of long-term ventilation preferences. Voice banking initiated. Palliative care team engaged for symptom management and family support.