Providing high-quality care remotely to patients with rare bone diseases during COVID-19 pandemic.
E BrizolaG AdamiG I BaroncelliM F BedeschiP BerardiS BoeroM L BrandiL CasaretoE CastagnolaP FraschiniD GattiS GianniniM V GonfiantiniV LandoniA MagrelliG MantovaniM B MichelisL A NastoL PanzeriE PianigianiA ScopinaroL TrespidiA VianelloG ZampinoLuca SangiorgiPublished in: Orphanet journal of rare diseases (2020)
During the COVID-19 outbreak, the European Reference Network on Rare Bone Diseases (ERN BOND) coordination team and Italian rare bone diseases healthcare professionals created the "COVID-19 Helpline for Rare Bone Diseases" in an attempt to provide high-quality information and expertise on rare bone diseases remotely to patients and healthcare professionals. The present position statement describes the key characteristics of the Helpline initiative, along with the main aspects and topics that recurrently emerged as central for rare bone diseases patients and professionals. The main topics highlighted are general recommendations, pulmonary complications, drug treatment, trauma, pregnancy, children and elderly people, and patient associations role. The successful experience of the "COVID-19 Helpline for Rare Bone Diseases" launched in Italy could serve as a primer of gold-standard remote care for rare bone diseases for the other European countries and globally. Furthermore, similar COVID-19 helplines could be considered and applied for other rare diseases in order to implement remote patients' care.
Keyphrases
- bone mineral density
- end stage renal disease
- sars cov
- coronavirus disease
- chronic kidney disease
- healthcare
- newly diagnosed
- ejection fraction
- bone loss
- soft tissue
- palliative care
- bone regeneration
- quality improvement
- peritoneal dialysis
- pregnant women
- young adults
- risk factors
- pulmonary hypertension
- body composition
- patient reported outcomes
- pain management
- social media
- clinical practice
- respiratory syndrome coronavirus
- transition metal