Innovative telemedicine technology usage in rare diseases management in primary care in a COVID-19 pandemic era: Lessons learnt and recommendations for future practice

Abstract

COVID-19 affected routine healthcare significantly and impaired the capability of healthcare organizations to deliver quality healthcare to achieve expected patient outcomes, including the care of patients with rare diseases. The rationale for this review is to highlight the important contribution of telemedicine technology to improving care quality of patients with rare diseases in a pandemic era. Aims and Objective: To explore the role and impact of telemedicine digital technology usage and user satisfaction in patients with rare diseases in the last two years since the COVID-19 pandemic. Methodology: An electronic database search was conducted using the PRISMA guide with search terms ‘telemedicine’ and ‘rare diseases’ in the last 2 years since the COVID-19 pandemic. The final search identified about 10 papers after screening, applying the exclusion criteria and sorting for eligibility and relevance. Results: Of the 10 papers reviewed, 6 were research articles while 4 were review articles. For the research papers there were 5239 participants or responders in total, with 1476 (28.2%) patients, 50 (0.01%) carers and 3713 (70.9%) clinicians and workers. The average age recorded by 4 of the research papers was 43.4 years while one paper particularly emphasized that telemedicine digital technology was used preferably by clinicians below 50 years of age. 52.5% of Clinician and Worker participants in 2 Studies were Male while 47.5% were Female, while only 22% of patient participants were Male, with 78% being Female. One paper recorded the proportion of patients who used telemedicine as 22.8 %, a second recorded the highest proportion of clinicians’ telemedicine usage as 59.8%, a third paper concluded the highest number of carers who were satisfied with telemedicine usage was 90%, with 58% also supporting its usage and a fourth recorded that 86% of patients were satisfied with its usage. However, another paper recorded that 26% of clinicians (psychiatrists) were not keen to use telemedicine. Conclusion: This review concludes that there is some evidence that telemedicine digital technology is a viable option and can be a long-term solution to primary care patients’ access to quality care in the post-pandemic era, including patients with rare diseases. International collaboration of clinicians via electronic or digital platforms will enhance quality of care, especially targeted to younger male physicians below the age of 50. Guidelines and protocol for its use within governmental laws and legal boundaries need to be strictly followed to ensure patient safety, reduce waiting times and achieve positive patient outcomes.