Table 3 Summary of reported negative points and concrete solutions suggested

A need for patient-centered information

Two patients found they had received too much information

Medical synthesis systematically given at the end of the day to ensure patients can read the information again and understand it at home

Ten patients found they had not received enough information and went back home with their question

Creation of a bulleted list to help patients to prepare for their appointments at TBD-RC, including one specifying “I prepare and write down my questions before the consultation”

Two patients did not dare ask their questions as they were overwhelmed by the number of experts they had seen in one day

Patients information sheet about TBD-RC sent prior to their arrival

A need to facilitate appointments

Fifteen patients complained about a lack of punctuality from doctors

Patients informed that their appointment will occur within a time range rather than at a specific time (e.g. between 9:30 am and 11:30 am)

Twenty-six patients described a difficult initial appointment setting

- Notification on the website of the hospital: “All the appointments are given by email after having received the medical documents of the patients. There is no possibility to take an appointment by phone for new patients”

- Involvement of general practitioners to refer their patients, using tele-expertise

Questioning proposed care paths

Four patients refused to consult the psychologist considering it was unnecessary

Implementation of the information sheet to explain why we offer a systematic consultation with a psychologist, sharing the experience of satisfied patients

Seven patients felt lost between opposing narratives

-Discussion groups between patients and health professionals set up on controversial issues to help patients access verified sources to form their own opinion

- Psychological support systematically offered

A need for a better communication

Six patients reported a lack of communication about TBDs and difficulties to assess the reliability of the information sources

-A national day on LB was held for the first time in France in May 2023. The target audience is the general population

- The TBD-RCs website was launched in March 2022 to provide information on TBDs and the reference centers to the general population and physicians, relying on mediatisation (82,942 views recorded as of January 10, 2024). This may help direct patients to consensual care pathways

- National guidelines about recommended care-paths in France were published in 2022, under the aegis of the High Authority of Health, resulting from a consensus between the patient associations and official scientific societies. The target groups are physicians and the general population. This may help direct patients to consensual care pathways

Twenty-five patients reported a lack of communication about TBD-RCs and official care-paths

Three patients reported a lack of research about TBDs

Systematic communication of the results of research projects to patients:

-Flyers/Posters in the waiting room, “What’s up to date about TBDs? What’s up to come?”

-Newsletter about the French national cohort

-Discussion groups with patients