Developing a rare disease chronic care model: Management of systemic sclerosis (MANOSS) study protocol.
Agnes KocherMichael SimonAndrew A DwyerPeter M VilligerPatrizia Künzler-HeuleSabina De GeestLut BerbenDunja NiccaPublished in: Journal of advanced nursing (2019)
Patients living with this rare disease lack access to coordinated, specialized care and self-management support from qualified HPs. Reengineering of current care, with consideration for technological opportunities, is warranted to meet patients' and families' needs.
Keyphrases
- systemic sclerosis
- end stage renal disease
- palliative care
- healthcare
- ejection fraction
- chronic kidney disease
- study protocol
- randomized controlled trial
- quality improvement
- peritoneal dialysis
- clinical trial
- interstitial lung disease
- pain management
- rheumatoid arthritis
- patient reported outcomes
- open label
- drug induced
- double blind