MECFA launches QI program in Jordan
CF Quality Improvement Education
Jordan
HYPOTHESIS AND SPECIFIC AIMS:
1- Establishment of a state-of-the-art multidisciplinary Cystic Fibrosis (CF) Care Center at King Abdullah University Hospital to accommodate all the needs of patients with CF while following the standards of care established by the Cystic Fibrosis Foundation.
2- Following our work with King Abdullah University Hospital, our goal is to create a network of CF Centers in Jordan with the proposed 3 centers located in 3 key cities, to advance CF care in pediatric and adult pulmonology hospitals throughout the country, including Princes Hamza Hospital, and Princess Rahmah Teaching Hospital.
3- Establish clinics for adults with CF at each center, ambulatory care only, and forge relationship with adult hospitals in Jordan.
SPECIFIC AIMS
1. To establish a network of CF Care Centers by starting with the development of a world class multidisciplinary CF Center at King Abdullah University Hospital (KAUH). This pilot and feasibility project will establish a care center able to manage all clinical aspects of patients with CF, following best evidence-based care guidelines and adapting them to settings in Jordan. The training will occur under direct and continuous supervision of the Boston Children’s Hospital and Brigham and Women’s Hospital (BCH/BWH) CF Center in Boston, Harvard Medical School, both in-person and virtually. Following virtual initial assessment, including electronic communication, we propose an in-person site visit to assess needs and deficiencies by:
2. To significantly improve clinical outcomes of patients with CF at the KAUH CF Center. We aim to significantly improve the nutritional status measured by body mass index percentile (BMI%) and lung function measured by forced expiratory volume in 1 second (FEV1%) and FEF25-75%.
3. To train multidisciplinary expert CF Team based in KAUH, ahead of expansion to Princes Hamza Hospital (PHH), and Princess Rahmah Teaching Hospital (PRTH).
4. To focus on Quality Improvement (QI) methodology to achieve clinical outcomes. In coordination with CFF sponsored QI coaches, the team at BCH/BWH will work closely with the Jordan teams to establish QI projects as a means to reach their goal of improving clinical care and well-established outcome measures. Areas of QI work will include: improving BMI, improving pulmonary function testing (e.g. FEV1); implementing Infection Prevention and Control (IP&C), access to devices for airway clearance, mental health screening and intervention, access to mucolytics, development of a CF Registry, as well as teaching QI methodology. QI project algorithms based on protocols developed with Cystic Fibrosis Foundation (CFF) sponsored leadership and learning collaboratives.
5. To empower the KAUH CF Center to serve as model for subsequent implementation of a network of CF centers across Jordan and to train CF Team at other centers, including PHH and PRTH. Once the pilot project has been consolidated and together with KAUH, we will work with these other clinics and hospitals to implement the same approach taken with KAUH, specifically PHH, and PRTH, or assist them indirectly to provide such training themselves. This network will adhere and meet all the requirements of the CFF for CF center accreditation.
6. To achieve in 5-8 years, a median life expectancy approaching 30 years of age. This will be accomplished by cementing the Jordan CF Center Network, using evidence-based, state of the art healthcare delivery, operating under strict quality improvement principles, ongoing multidisciplinary team training, and establishing a meaningful clinical research initiative.
BACKGROUND AND SIGNIFICANCE:
The state of current CF Care in Jordan indicates that without a systematic and sustained intervention, CF leads to rapid progression and premature death, particularly when compared with other countries regionally and globally. This also comes with a high economic and emotional cost to patients and their families. Guidelines similar to the ones in the US will help develop specific interventions on prevention, diagnosis, treatment and rehabilitation to improve outcomes and quality of life of these patients. Thus, this pilot and feasibility project will help enhance the capacity of a national program and develop a care network for patients with CF in the country of Jordan.
EXPERIMENTAL DESIGN AND METHODS:
PARTICIPANTS
1. Boston Children’s Hospital and Brigham and Women’s Hospital CF Center (BCH/BWH), Division of Pediatric Pulmonary Medicine at Boston Children’s and the Division of Pulmonary and Critical Care Medicine (Ahmet Uluer, DO MPH, Internal Medicine and Pediatric Trained Pulmonologist and Adult CF Center Director) at Harvard Medical School, will provide intensive on-site training to KAUH, ahead of training provided to PHH, and PRTH teams in the initial part of the project. Subsequently, the BCH/BWH CF Team will travel at least twice to evaluate patients, provide management guidance and initiate QI activities. The BCH/BWH CF team will establish a fluid communication via secured IT with the local teams to discuss patient management and care plans. The BCH/BWH CF team will maintain close collaboration with KAUH and eventually the 2 CF Centers earmarked and more.
2. KAUH, and eventually PHH, PRTH CF Centers will participate in the project by establishing a collaborative relationship with BCH/BWH CF Center. Such a relationship assures the regulatory framework and compliance with minimum quality of healthcare. A long-term goal is establishing a network of CF care centers in Jordan.
3. The Jordan Ministry of Health, Dr Firas Hawari: we will work together with officials charged with the medical care of children at KAUH, as well as the other 2 state CF Centers enrolled in the program.
4. The Ministry of Health has agreed to supply two missing essential drugs, dornase alpha and fat-soluble CF vitamins.
5. They Ministry of Health has dedicated space in KAUH CF Center and each of the other hospital CF Centers and added pulmonary function testing (Spirometry and Body Plethysmography) to pulmonology departments.
3. MECFA donated UTSAT diagnostic systems to two of the Centers chosen for the program. There is now adequate access to diagnosis in Jordan.
4. As the collaboration expands, other hospitals, including Jordan University Hospital and the Queen Rania Military Hospital will be invited to join the network and learn QI methodology.
