Methods
Following the site visit, in 2018, the collaboration started in 2019 and
included exchange of visits between the 2 centers to share knowledge and
experience and help train the Ma CFC team on the CFF standard of care.
The collaboration included in person visit from the UoM CFC team to Ma
CFC, visit from the Ma CFC team to the UoM CFC and a rotation for the Ma
CFC fellow to train at the UoM CFC for 2 months. In 2020 and 2021, due
to the CoV2 pandemic and the travel restrictions, webcast meetings were
arranged and are ongoing between the 2 centers to continue with follow
up on progress and QI efforts. QI methodology was taught to all team
members to improve their center data including patients’ nutritional and
pulmonary function status. Implementation of IP&C policy started
following the first site visit to the center. UoM CFC QI processes were
shared with Ma CFC team members. Ma CFC has been involved in several
clinical research projects. Expanding Ma CFC’s research capacity is a
focus of the collaboration as well. The CFF guidelines were reviewed and
adjusted to meet the Ma CFC’s needs and available resources. The
Patient/Family organization KIFDER involvement with this collaboration
has been very important to help change the current culture of pw CF.
KIFDER has been helpful in getting pw CF to adhere to the new
implemented IP&C measures, not to socially interact and to schedule
regular visits for exacerbations. In addition, KIFDER has been crucial
in supporting the center with much needed resources and staff support
through fund raising and advocacy. MoH is supportive in supplying most
of the necessary medications, diagnostics and laboratory follow up.
However, it has been partially supportive of the centers’ Allied Health
professionals. Table 1 summarizes the Ma CFC patient population
demographics.