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.