Improving patients health outcomes by supporting our members
CF Quality Improvement Training Palestine -
Boston Children's Hospital CF Center and Caritas Baby Hospital, Bethlehem.
We aim to establish a pilot, state of the art multidisciplinary Cystic Fibrosis (CF) Care Center at Caritas Baby Hospital, Bethlehem, State of Palestine. This pilot center will accommodate all the needs of patients with CF while following the standards of care established by the Cystic Fibrosis Foundation, the world leader in the fight against CF.
1. To implement a state of the art, world class multidisciplinary CF Center in Bethlehem and Caritas Baby Hospital. 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 the West Bank.
2. To train a multidisciplinary expert CF Team based in Caritas Baby Hospital and West Bank. 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.
3. To significantly improve clinical outcomes of patients with CF seen at the Center. We aim to improve the nutritional status measured by BMI% and lung function measured by FEV1% by FEF25-75%, respectively.
4. To focus on Quality Improvement (QI) methodology to achieve clinical outcomes. The team at BCH/BWH will work closely with Caritas Baby Hospital to establish QI projects to reach their goal of improving care. Areas of QI work will include: improving BMI, improving pulmonary function testing, implementing Infection Prevention and Control (IP&C), availability of 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 Caritas Baby Hospital to serve as model for subsequent implementation of a network of CF centers across the West Bank and later, Gaza Strip. Once the pilot project has been consolidated, we will work with the other clinics and hospitals to implement the same approach taken with Caritas Baby Hospital or assist them to directly provide training. This network will adhere and meet all the requirements of the CFF for center accreditation.
6. To achieve in 5-8 years, a median life expectancy approaching 30 years of age.
CF Patients at the Caritas Hospital, Bethlehem
PILOT AND FEASIBILITY PROGRAM TO DEVELOP A CYSTIC FIBROSIS CARE CENTER OF EXCELLENCE IN TURKEY
Marmara CF Center, Istanbul, Turkey
UNIVERSITY OF Michigan Collaboration
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 Turkey’s setting. The program will train a multidisciplinary expert CF Team based in Turkey.
The training will occur under direct and continuous supervision of the University of Michigan (UM) CF Center, both in the US and Turkey. The program will focus on quality improvement (QI) projects with the UM CF team working closely with University of Marmara (UoM) CF Center.
Areas of QI work will include: improving BMI, improving pulmonary function testing, implementing Infection Prevention and Control (IP&C) in the center.
Once the pilot project has been consolidated, we will use the programs approach at another CF Center in Turkey. That will be followed by working with the 2 centers and MoH to develop 5-8 CF Centers, thus creating the National CF Center Network in Turkey. This network will adhere and meet all the requirements of the Cystic Fibrosis Foundation for center accreditation achieving after 5 or more years, a median life expectancy approaching 30 years of age.
This will be accomplished by cementing the National 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.
Prof. Nasr and the Michigan CF Center Team
Clinician and Allied Health Training Program
In the Middle East there are limited options for specialized CF care mainly due to lack of well trained allied health professionals working in pulmonology departments. There is little to no training available and most hospitals lack adequate budget to cover a dedicated allied health team for CF.
MECFA offers deep dive allied health workshshops at our annual conferences. IN 2020, MECFA will again offer specialized workshops specifically for allied health professionals.
Pediatric Leadership program
Dr Nisreen Rumman, a MECFA founding member, is working to build a CF team at Caritas Baby Hospital in Bethlehem, where most Palestinian CF patients are followed up.
Dr Rumman applied and was accepted to attend the Pediatric leadership program (PLP)
This program is a one-year certificate program developed by the Harvard Medical School, USA and University College London Great Ormond Street, England. It is designed for medical professionals who want to become leaders in pediatrics and provides them with tools to foster innovation at their respective organizations.
Dr Rumman's course is being sponsored by the We Care program and MECFA partners.
Dr Nisreen Rumman and the Caritas Baby Hospital CF Team
EGYPT - ALLIED HEALTH
Allied Health Training 2022 Preliminary Program
Ain Shams University, Cairo Egypt
Hypothesis and Specific Aims:
1- Assessing the resources and needs for physical therapy (PT) and nutrition at each of the 5 University Children’s Hospitals
2- Provide education and training by our PT and dietitian to the 5 Universities to improve their care. This training is lacking in these 2 areas in Egypt. Combine this training with patient and parent education on basic nutrition and PT.
3- Developing of national standard of care for CF patients in Egypt. From the interactions with the Universities there, they are eager to work on following & developing national guidelines for CF care specifically for PT and nutrition.
Egypt’s current CF Care indicates that without a systematic and sustained intervention, CF could rapidly lead to death, with a high economic and emotional cost to patients and their families. There should be training of the care teams on CF care and developing of specific guidelines to help improve treatment, outcomes, and quality of life for these patients. In addition to training and working with the pediatric pulmonologists there to improve their CF care which will be done by Profl Samya Nasr during her sabbatical (June through November), having the PT and dietitian joining Prof. Nasr in June to conduct the assessment and training will be extremely helpful.
Thank you to our sponsors
CF Foundation www.cff.org
As part of the MaMi project, Marmara University CF Center fellow, Pinar Almala Ergenekon, joined the Michigan CF Center in the USA for 2 months training this summer. Prof. Samya Nasr and her CF team at the Michigan CF Center welcomed Pinar in June 2019. The Marmara fellow training included attending UM CF clinics, inpatient rounds, attends bronchoscopies, rotation through PFT lab, sleep clinics and other pulmonary clinics.
Fellow Pinar Almala Egenekon
Cystic Fibrosis Daignostic PILOT PROGRAM to increase CF diagnostics in the Middle East.
Lack of diagnosis plays a major role in the early morbidity rate among CF patients in Egypt, Jordan, Ethiopia and Palestine, particularly in Gaza. In these countries due to low population of diagnosed patients, Health Ministries offer little support for adequate care and essential therapies. In order to successfully lobby governments for support of patients an increase in accurate, early CF diagnosis is necessary.
Establishment of a pilot program to donate diagnostic equipment and testing consumables (10,000 tests, 1,000 with each collection/anyliser system) to 10 hospitals located in Egypt (5), Ethiopia (1), Palestine/Gaza (2) and Jordan (2).
Provide education in the use of the UTSAT CF diagnostic system and diagnosis methods onsite at each receiving hospital.
Host diagnostic workshops for clinicians from participating hospitals during the MECFC 2020 in Muscat, Oman.
Provide tutorial videos on the use of the equipment online free to participating hospitals.
Monitor each hospital to ensure technique and accuracy in diagnosing CF with the UTSAT system.
Use the donation and increase in diagnosed patients to begin lobbying the MoH in each participating country to support CF patients care and essential therapies.
Evaluate the program and develop policies and procedures for donating medication and equipment to MECFA member countries.
The main objective of this pilot program is
to significantly improve clinical outcomes of patients with CF through early and accurate diagnosis.
Several benefits have been associated with early identification of CF, including better growth and lung function, less intensive therapeutic burden and reduced cost of care. Accurate detection permits early access to specialized medical care, and thus results in less morbidity and longer life expectancy.
Increasing education and access to diagnostic equipment and supplies will lead to early detection and improved awareness of the signs of CF among pediatricians and pulmonologists at each hospital.
Lobbying for Therapies
Palestine and Jordan lobby for essential therapies.
MECFA supports members who are working to lobby their health ministries and government officials to gain access to essential therapies for CF patients.
Palestine and Jordan are now actively engaged with programs to lobby for essential CF therapies supported by MECFA and our partners.