Background and objective
Specialized multidisciplinary ALS care has been shown to extend survival and improve patient's and caregiver's quality of life. During the COVID‐19 pandemic, the management of patients suddenly changed and telemedicine has been proven to be as effective as outpatient care. We elaborate the experience with Telemedicine of a Tertiary ALS Center from an Italian geographical area with high infectious risk during the COVID‐19 pandemic.
Methods
19 patients were evaluated in telemedicine by a multidisciplinary team including a neurologist (clinical evaluation, intercurrent events, and drug prescriptions); a dietician (diet and weight monitoring); a psychologist (psychological assessment and support); and a physiotherapist (physiotherapy treatment and device prescription). Telemedicine was performed using the online platform “IoMT Connected Care Platform (Ticuro Reply).”
Results
All patients reported a positive perception of talking face to face with healthcare professionals and were satisfied with how the team understood their problems. During video televisits, there was a change in the patient's medication regimen in 11/19; 2/19 required pneumological evaluation and started NIV; and 9/16 patients required prescription of devices. The mean monthly decline of ALSFRS‐R before televisit was 0.88 (SD 1.17) and during televisit of 0.49 (SD 0.75). Bodyweight and daily caloric content remain stable. Reduction in HADS scores and stability in ALSAQ‐40 were observed.
Discussion
Our study positively reproduced the multidisciplinary approach currently used with ALS patients, trying to stabilize the functional and metabolic status and improving the psychological one. Future directions include a personalized telemedicine program according to the patient's needs.
Nutritional status is one of the most relevant prognostic factors in Amyotrophic Lateral Sclerosis (ALS), and close monitoring can help avoid severe weight loss over the disease course. We describe the impact of a Chatbot webapp on improving the communications between physicians, patients, and/or caregivers for dietary monitoring. We developed a chatbot that provides patients with a tool to register their meals through an intuitive and carefully designed conversational interface. Patients recorded their dietary intake twice weekly and received an adequate nutritional recommendation monthly. We monitored their functional and nutritional parameters. The data were compared with a control group followed up by standard counseling. We enrolled 26 patients. Regarding feasibility, 96% of participants completed the three-month follow-up, and 77% ended the six months. Regarding the change in weight in the Chatbot group, we observed a weight stabilization (F = 1.874, p-value: 0.310 for changes) over the telehealth compared to the control group (F = 1.710, p-value: 0.024 for changes). A telehealth approach for nutritional support is feasible and reproducible in an ALS setting: frequent monitoring turned out to help prevent further weight loss, allowing an early nutritional strategy adjustment.
We report, for the first time, the case of amyotrophic lateral sclerosis (ALS) onset in a 54-yearold woman not following a strict gluten-free diet (GFD) for six years after the diagnosis of celiac disease (CD). The patient did not display any sign of gluten toxicity, malabsorption, or CDrelated comorbidity. Previous cases reported in medical literature showed ALS-like forms secondary to gluten intolerance, with symptom remission after a strict GFD. Even after correcting dietary flaws, the clinical manifestation of ALS did not improve in our patient. The main neurological involvement was a muscular weakness of upper and lower limbs, and dysphagia causing a weight loss for reduced food intake without any signs of malabsorption. Only vitamin D and folate levels were observed below normal; therefore, nutritional management required an oral supplementation of nutrients and vitamins. Muscle wasting was confirmed by an electrophysiological study using electromyography (EMG); body composition
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