Table 1.

Unmet needs identified in the phases of the SSc patient pathway in all eight European countries

	Identified by HCPs and patients	Identified by HCPs	Identified by patients
Pre-diagnosis	Low awareness of first SSc symptoms among patients	Lack of clear referral structure
	Limited knowledge of SSc among GPs
	Low knowledge of SSc among specialists
Diagnosis	Lack of knowledge regarding ILD	Absence of established care pathways	Patient confusion when receiving the diagnosis
	Difficulties for patients to remember information from the diagnostic consultation	Lack of specialized nurses
Post-diagnosis	Lack of curative treatment	Lack of multidisciplinary collaboration among specialists	Difficulties in meeting other SSc patients for patients   living in remote areas
	Lack of paramedical care		Difficulty in explaining the disease to others
	Lack of psychological support
	Lack of clear and positive information

GP: general practitioner; HCP: healthcare professional; ILD: interstitial lung disease.