Deficiencies
The collaboration started with a site visit in 2018. The following
deficiencies were identified:
- A high number of patients had low BMI Z scores: Median Z score was
-1.2 (25th and 75th: -2.2- -0.2), -0.2 (25th and 75th: -1.5-0.4), and
-0.6 (25th and 75th: -1.3-0.1) in patients 2-5, 6-11, 12-17 years old,
respectively. The BMI Z score was lower in all age groups compared to
the peers registered in ECFSPR.
- A high number of patients had FEV1 pp values which trended down as
they got older: Median FEV1 pp was 86.1 (25th and
75th%:70.5-97.8) in 6-17 years compared to 60.8
(25th and 75th: 40.5-73.3) in patients 18-24 years old.
- Inadequate structural integration of Ma CFC with Physiotherapy and
Physical Medicine and Rehabilitation department (PM&R). Patients were
receiving consultation for airway clearance, bronchial hygiene
techniques and exercise programs as needed especially while
hospitalized.
- The center had no infection
prevention and control (IP&C) policies or measures in place.
- Although there was an outpatient clinic schedule in place, patients
with mild to moderate CF exacerbation were seen in the CF clinic
without a scheduled appointment.
- Clinic space was inadequate and not suitable for CF patients follow
up.
- Inadequate Allied Health professionals support to the center,
including CF nurse, dietetian, physical therapist. Ma CFC had no
social workers or psychologists in the institution..