Table 4 Criteria for quality of CF care derived from the chronic care model

IG — Improvement Goals at the CFC

1 — There are improvement goals at the CFC

2 — These goals, if they exist, are the subject of both indicators and an action plan at the CFC

3 — The CFC has tools to follow up this action plan in the form of a dashboard

4 — To your knowledge, this action plan has been discussed with management and validated

SMS — Self-Management Support - Therapeutic Patient Education

1 — To your knowledge, there is a therapeutic education program for patients at the CFC authorized by the French regional health agency (ARS)

2 — In your opinion, the professionals at the CFC are well trained in TPE

3 — More than 80% of the patients/parents attended at least one TPE session in the last year

4 — The total time spent by the professionals on TPE is sufficient

5 — There are no obstacles to implementing TPE at the CFC

6 — The team is involved in the studies of one of the French national groups on therapeutic education via face-to-face participation or regular reporting of information

7 — The CFC has priority objectives for developing TPE

8 — If yes, the CFC has indicators to follow up the achievement of these priority objectives

MM — Multidisciplinary management

1 — To your knowledge, the multidisciplinary team at the CFC comprises all the disciplines recommended by the French National Diagnosis and Treatment Protocol (PNDS): specialist physician, nurse, physiotherapist, psychologist, secretary, and social worker

2 — The number of staff in all disciplines is sufficient for the number of patients followed up

3 — In your view, the multidisciplinary team seems stable over time (the professionals’ turnover rate is below 20% in a year)

4 — The members of the multidisciplinary team have a great deal of expertise in managing cystic fibrosis

5 — The multidisciplinary team meets often enough to perform a summary of the records of the patients who have come to the CFC

6 — During these multidisciplinary meetings, the team generally reviews the records of the patients with a scheduled visit to the CFC

7 — During these multidisciplinary meetings, the team regularly examines the patients’ educational needs and the outcomes of the educational sessions held

8 — The scheduled consultation is genuinely multidisciplinary: the patient meets with at least the physician, the nurse, and the physiotherapist

9 — The scheduled consultation allows the patient to meet with a professional other than the ones mentioned above, as required (dietician, psychologist, or social worker)

10 — The scheduled consultation allows the patient to benefit at least once per year from a TPE session on a priority objective for him or her

11 — When a patient requires it, the CFC is able to call upon a network of referent professionals in other disciplines with knowledge of cystic fibrosis (geneticist, endocrinologist, ENT, gastroenterologist, etc.)

12 — It is possible to be managed at the CFC on a 24/7 basis

13 — Patients who arrive at the hospital emergency department are managed in accordance with a protocol established by the CFC with the emergency department for patients suffering from cystic fibrosis

14 — The team regularly holds a meeting to discuss its functioning and the problems at the CFC in order to improve care management

DS — Therapeutic decision support (guidelines)

1 — The team manages the availability of guidelines (nutritional, respiratory, hygienic, etc.) in a way that they are accessible to all professionals

2 — The team has defined an internal reporting procedure to insure that care management recommendations (guidelines) updates are accessible to the team

3 — The team systematically verifies for each patient that the latest recommendations are applied and/or offered to him or her

4 — The team uses alerts on the population followed up to verify that the latest recommendations for care are applied to the eligible patients (e.g. glucose tolerance test alert, vaccination alert, examination alert, etc.)

5 — The team has optimally organized the multidisciplinary consultation process (circuit, schedules, chain of professionals, cross-contamination, hazards, etc.) to deliver high quality of care.

6 — The team has optimally organized the process of responding to telephone or email messages from the patients and families

IS — Patient information system

1 — The team uses an electronic cystic fibrosis patient record

2 — The team has an electronic patient record system that allows it to view changes in the patient health outcomes (nutritional and respiratory outcomes) over the course of several years

3 — The team uses the electronic patient record system during the multidisciplinary staff meetings

4 — The team displays information from the electronic patient record during the multidisciplinary meeting (graphs of changes over time, reports from previous consultations with different professionals, etc.)

5 — The team uses the electronic patient record system both to create alerts on applying recommendations for the patient and to compile statistics on the population followed up

6 — The team uses the electronic patient record system to include biology results

7 — The team uses the electronic patient record system to include imaging results

8 — The electronic patient record system helps in selecting patients for clinical trials

9 — The electronic patient record data are automatically transmitted with a good degree of reliability (minimal verifications, corrections, and additions) to the French Cystic Fibrosis Registry

SN — Staff in the networks in the community

1 — The CFC has organized a network of professionals in the patient community for managing care at home

2 — The CFC organizes regular trainings for professionals in the patient community

3 — The CFC regularly evaluates the professionals caring for CF patients in the community

4 — The CFC assesses the health providers of devices managing CF patients

5 — The CFC assesses the needs for home care and its distribution between professionals and carers for a balanced organization of home care

6 — The CFC provides the patients with offers of sports activities, creative activities, and psychological support near their place of residence