Table 1.
Disruptive points and challenges reported by healthcare professionals and patients with SLE
| Potential disruption points to an optimal patient pathway in SLE | Physicians | Patients |
| Undertraining of physicians (including primary care physicians) about SLE. | ✓ | ✓ |
| Excessive diagnosis delay for SLE (in some cases). | ✓ | ✓ |
| Indications for ANA testing. | ✓ | ✗ |
| Lack of adequate management and/or referral strategy for patients with ANA positivity. | ✓ | ✓ |
| Lack of dedicated consultation for announcing the diagnosis. | ✗ | ✓ |
| Lack of proper support following diagnosis announcement. | ✗ | ✓ |
| Need for more coordinated healthcare. | ✓ | ✓ |
| Need for interoperable data management systems between healthcare professionals. | ✓ | ✗ |
| Use of innovating tools and technologies to ensure privacy and high quality of care. | ✓ | ✗ |
| Need for clearly defined and individualised SLE patient pathways. | ✓ | ✓ |
| Lack of detailed information about how to prepare the consultation with the specialist. | ✗ | ✓ |
| Need to clarify the role of secondary healthcare professionals. | ✓ | ✓ |
| Management and referral strategy for SLE flares. | ✓ | ✓ |
| Lack of access to an SLE care coordinator (such as a specialised nurse). | ✓ | ✓ |
| Written personalised therapeutic management plan for patients. | ✗ | ✓ |
| Regular SLE cases review by a multidisciplinary expert panel. | ✓ | ✗ |
| Individualised treatment strategies based on patient characteristics. | ✓ | ✗ |
| Lack of detailed feedback on laboratory tests results. | ✓ | ✓ |
| Therapeutic education about SLE. | ✓ | ✓ |
| Prevention of work disability, including the use of appropriate social support. | ✗ | ✓ |
| Increased interprofessional interactions with coordinated care. | ✓ | ✓ |
| Access to psychologists and dietitians (outside inpatient care settings). | ✗ | ✓ |
| Specific management of paediatric and adolescent SLE, including transition towards adult care. | ✓ | ✓ |
| Improved pain management. | ✗ | ✓ |
| The need for more coordinated care between in-hospital and outpatient pharmacies. | ✗ | ✓ |
| Lack of detailed assessment of SLE impact over personal life. | ✗ | ✓ |
Disruptive points and challenges marked with a tick (✓) were spontaneously reported by the stakeholders during the focus groups while those marked with a cross (✗) were not.