Objective:To assess the rapid implementation of child neurology telehealth outpatient care with the onset of the COVID-19 pandemic in March 2020.Methods:This was a cohort study with retrospective comparison of 14,780 in-person encounters and 2,589 telehealth encounters including 2,093 audio-video telemedicine and 496 scheduled telephone encounters between 10/1/19 and 4/24/2020. We compared in-person and telehealth encounters for patient demographics and diagnoses. For audio-video telemedicine encounters, we analyzed questionnaire responses addressing provider experience, follow-up plans, technical quality, need for in-person assessment, and parent/caregiver satisfaction. We performed manual reviews of encounters flagged as concerning by providers.Results:There were no differences in patient age and major ICD10 codes before and after transition. Clinicians considered telemedicine satisfactory in 93% (1200/1286) of encounters and suggested telemedicine as a component for follow-up care in 89% (1144/1286) of encounters. Technical challenges were reported in 40% (519/1314) of encounters. In-person assessment was considered warranted following 5% (65/1285) of encounters. Patients/caregivers indicated interest in telemedicine for future care in 86% (187/217) of encounters. Participation in telemedicine encounters compared to telephone encounters was less frequent amongst patients in racial or ethnic minority groups.Conclusions:We effectively converted most of our outpatient care to telehealth encounters, including mostly audio-video telemedicine encounters. Providers rated the vast majority of telemedicine encounters to be satisfactory, and only a small proportion of encounters required short-term in-person follow-up. These findings suggest telemedicine is feasible and effective for a large proportion of child neurology care. Additional strategies are needed to ensure equitable telemedicine utilization.
Communication between patients and haemophilia centres is important in the management of the disease. Traditionally this has been done by paper records which give retrospective and often incomplete data. This paper describes the development and pilot study of a novel Internet-based electronic patient treatment log. The advantages of the system include up to date information available to the haemophilia centre, less data entry, better quality records and an individualized alert system for significant events. The system was tested with ten patients at three UK haemophilia centres and found to be feasible and easy to use. In the opinion of the patients and health care professionals involved in the pilot study, the system improves quality, accuracy, accessibility and usefulness of patient generated data. Development of the system is ongoing and its use extended to other haemophilia centres.
X-linked adrenoleukodystrophy is a neurodegenerative disorder affecting the myelin of the nervous system and the adrenal cortex. The childhood form of the disease is typically heralded by subtle neurocognitive changes which later progress. Acute presentation of childhood ALD has been reported, but the incidence is not known. We reviewed the records of 485 boys with childhood ALD, determined those with acute presentation, and classified them as adrenal crisis, seizures, or encephalopathy. Of the 485 reviewed cases, 45 (9.3%) presented acutely at an average age of 5.5 years. Twenty of 45 (44%) presented with seizures, focal seizures in 6 boys and generalized in the remainder with 4 having status epilepticus. Twenty out of 45 presented with acute adrenal crisis. Five of 45 presented with acute encephalopathy or coma. The diagnosis of ALD was rarely made in the acute period, but was often suggested by neuroimaging. The accurate, rapid diagnosis of ALD has important implications for treatment as well as for other family members and should be considered in appropriate patients.
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