Discussion
Our team (UoM CFC) started collaborating with a CF center in Turkey (Ma
CFC) to see if we can help improve their CF care. Our collaboration has
been successful because the two teams have been willing to work together
to create an effective model of collaboration. Each team brought varying
strengths and resources to the partnerships, but they also brought their
own organizational cultures, regulations, and expectations, that led to
adjustment of the guidelines and protocols to accommodate for the
cultural, regulations and resources. Marmara University administration
were also willing to work with the teams to improve care which led to
providing the center with much needed resources.
The goal of the collaboration has been to address the deficiency in
quality of care and outcomes. The collaboration between the 2 centers
has been supported by MECFA and CFF. Of note, Turkey is classified as
middle-income country.
To create a model of care at Ma CFC, UoM CFC team visits to the center
was an important part of the collaboration to evaluate the areas that
need improvement and follow progress. The Ma team visits to the UoM CFC
provided an important look at a HIC CF center’s structure and operation.
The collaboration included also training of the Ma team on QI measures
and processes.
Data sharing between the two centers was an important part of the
collaboration.
Teaching and implementing QI tools have led to improvement in the Ma CFC
care and data. Compared to 2017, there has been significant improvement
in FEV1 in all age groups in 2020 data (Table 2). This is due in large
part to the close monitoring of FEV1pp and the intervention if there was
a drop in FEV1pp according to UoM algorithm. 9Improvements in FEV1pp are also likely due to teaching pw CF and their
families the importance of doing their treatment regularly, adhere to
the regularly scheduled visits and learn how to clean their nebulized
equipment. In addition, educational material was created and shared with
them through classes and virtually. Evaluating the nutritional status of
pw CF has become a top priority since achieving an optimal nutritional
status results in improving morbidity and mortally. The UoM protocols
and algorithm were used for the implementation of a BMI QI project at
Marmara. 8 BMI improved for the 2–5-year-old age
group but it didn’t show improvement in the 6-11 years old and the
12-17- year -old groups. That could be due to the need to more
aggressive in implementation of the algorithm in these age groups
including the use of high calorie diet, appetite stimulants and enteral
feedings. That could also be due to the need to change the culture of pw
CF and families of accepting the fact that these patients are small and
want to be thin. (Table 3).
The collaboration started with in person interactions. The site visit,
team visits and fellow’s visits have all been very productive and useful
to both teams. However, when the CoV2 pandemic started, an adjustment to
the collaboration was needed. The communications became virtual with
regularly scheduled virtual meetings to work on progress, start new
projects and come up with new ideas. The second fellow’s rotation was
delayed and rescheduled to 2022. The collaboration was scheduled for 2
years, however with the pandemic delay, it became 2 years in person
visits (with the second year scheduled for 2022), and two years of
virtual interaction in between
. The extension of the collaboration has been fruitful in strengthening
the collaboration and the QI work.
Next steps in the collaboration are: 1- to work with the Turkish
Thoracic Society and MoH to create a notional CF guideline, 2- to create
National CF Center Network in Turkey, using evidence-based, state of the
art healthcare delivery, operating under quality improvement principles,
ongoing multidisciplinary team training, and establishing a meaningful
clinical research initiative.
In conclusion , this partnership can be viewed as a model of
collaboration to be duplicated in other Middle East Countries and LMIC
to deliver optimal CF care. There are future challenges and
opportunities to create a meaningful collaboration between teams in LMIC
and HIC to improve CF care globally. Some of the challenges include the
inability to make the diagnosis, either because of lack of the sweat
testing equipment or low index of suspension for CF. Another challenge
could be the lack of the multidisciplinary team training and approach to
treating CF. Opportunities include collaborations with CF teams from HIC
to help with the training and to help adapt CF care guidelines to the
countries’ resources and culture. Creating patient organizations would
help in increasing awareness like KIFDER does in Turkey. Use of mobile
technology (which is widely available in most LMIC), to strengthen the
collaboration between teams and to facilitate access, improve
communication between the medical teams and patients and families would
be beneficial. Creating registries with standard datasets that guide
population management and data management tools could help clinical
management. We believe that more collaborations between CF centers in
HIC and LMIC could lead to significant improvement in CF care worldwide.