Table 7 Engagement of the patients/parents on the quality team (QT)

Information and activation of the patients/parents

1. The patients and parents are educated regularly (annually or more often) by the team about general subjects concerning cystic fibrosis care and research.

2. The patients and parents are rather familiar with general cystic fibrosis information: research, progress made, and Registry data.

3. The CFC team has educated the patients and parents about the PHARE-M’s importance and aim.

4. A good relationship between the patient or parent recruited and the team is indispensable for the patient or parent to participate in the PHARE-M.

5. The patient or parent recruited is well informed of the challenges (10 commitments) of management quality.

6. The presence of a patient or parent on the steering team is a given and an asset.

7. The place of a parent or patient is not on a quality team, because he or she does not have enough training or education.

8. The place of a parent or patient is not on a quality team, because he or she already has too many personal problems to manage.

9. The patient or parent recruited possesses the qualities to become a member of the steering team.

10. The patient or parent recruited must have developed coping skills (see therapeutic education standard: knowing how to manage emotions and stress; solving problems, making decisions, and making choices; knowing how to communicate and being adept in relationships with others; and knowing how to put oneself in the place of others).