Journal of Cystic Fibrosis 13 (2014) 359 – 360 www.elsevier.com/locate/jcf

Editorial

ESCF Care Guidelines beyond Europe Over the past two decades there has been a significant improvement in clinical outcomes for individuals with cystic fibrosis (CF). The median predicted survival age in the US reached 41.1 years in 2012 [4]. Although a number of new medications and more effective therapies have been introduced to treat CF, improved survival has also been a consequence of better strategies to use these therapies including: development of sophisticated patient registries, elaboration and use of evidencebased best practice guidelines, provision of care by expert, multidisciplinary care teams and a system-oriented approach to quality improvement with emphasis on patient-centered and family-centered care [5]. The updated European CF Society (ECFS) Standards of Care Guidelines presented in the accompanying supplement of the Journal of Cystic Fibrosis provide another opportunity to improve the quality of care for individuals with CF and to establish best practice standards across Europe [1–3]. These care guidelines also represent a significant contribution for improving CF care worldwide. The ECFS has not only provided recommendations for the specific care practices and therapeutic interventions, but they strive to define best practices for the delivery of expert, multidisciplinary care within specialized care centers. However, adoption and implementation of these care guidelines may be challenging for some countries in Europe [6], Latin America, and other areas of the world [7] where resources are limited. Therapeutic programs must be adapted to specific geographical, social and political environments where poverty, lack of understanding of the value of multidisciplinary care and geographic barriers can hinder access to CF care. Nevertheless, centralization and organization of CF care within centers of excellence employing best practices and engaging in quality improvement initiatives, and the creation of national data registries represent important steps that can lead to improved survival. Gutierrez et al. [7] suggested that the key to improve CF outcomes in Latin America is enhancing expertise and access to specialized CF care. Similarly, Colombo and Littlewood [6] suggested that European countries should have at least one adequately staffed CF care center, improved funding, neonatal screening, national patient registries and the formation of national CF parent and patient organizations. The development of a care center network in the United States has been instrumental in advancing care practices and improving

the lives of those with CF [8]. However, to successfully implement care guidelines with high standards in many areas of the world the current framework of CF care delivery will need to be transformed because there is a lack of expert manpower and multidisciplinary teams. For example, in Latin America there are several barriers to establishing comprehensive multidisciplinary CF centers. First, there are few pediatric pulmonologists who have received training at high-performing CF centers abroad. Additionally, the structure of academic medicine, including time commitment and poor remuneration, makes it very difficult for these individuals to serve as mentors and leaders in CF care. Most academic faculty appointments and governmental and charitable job opportunities do not allow financial independence with physicians and other healthcare professionals in these settings are forced to supplement their income by working part-time in private practice. This makes it impossible to support a multidisciplinary team and effectively creates a choice of care for their patients, preventing CF care providers from caring for an adequate minimal number of patients. In Chile, the majority of the population receives health care through public health service bureaus [9]. These bureaus are required to be self-sufficient and able to handle all but the most complex medical conditions (such as transplantation and complex neonatal care). Thus, CF is managed within each bureau, resulting in a significant dispersion of patients. In Chile's capital Santiago, a city of 6.5 million inhabitants, the six health bureaus each care for an average of 20–30 patients, an insufficient number for providers to acquire needed expertise. The ECFS Center Framework Guidelines call for 50 patients as the minimum number to maintain an appropriate level of expertise and experience [1]. Nonetheless, there are examples of CF care centers in Latin America, specifically in Argentina [10] and Brazil [11], that fulfill the requirements proposed by the ECFS. However, these are typically single, local care centers, led by a visionary leader and dedicated personnel, without translation into regional or national programs. An additional value of care guidelines is that they can be used to guide quality improvement efforts. To be successful, reliable information must be available to track both therapeutic interventions and outcomes. Therefore, the development of patient registries to track these data is essential for optimal CF care. Some countries in South America attempted developing such registries (Cystic Fibrosis Latin American Registry, REGLAFQ,

http://dx.doi.org/10.1016/j.jcf.2014.05.002 1569-1993/© 2014 European Cystic Fibrosis Society. Published by Elsevier B.V. All rights reserved.

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1987–2000); but they have been limited in scope, reach, provider participation and many are not currently active. Brazil, with a population of 190 million, more than 3000 individuals with CF and 250 to 300 newly diagnosed patients yearly, has made important advances in developing a CF center network currently with thirteen centers, neonatal screening in several provinces as part of the National Neonatal Registry Program (Programa Nacional de Triagem Neonatal, PNTN), and a patient registry (Registro Brasileiro de Fibrose Cistica, REBRAFQ) [11]. Chile has made significant progress since 2002 with the start of the National Cystic Fibrosis Program (Programa Nacional de Fibrosis Quistica, PNFQ) [12]. Lastly, Argentina with a comparatively high incidence of CF, has reinitiated the Argentinian Cystic Fibrosis Registry, RENAFQ, with currently 790 entries (S. Pereyro, personal communication). The revised ECFS Care Guidelines provide a roadmap to enhancing care in Europe. Hopefully, these guidelines will inspire the development of specialized centers that can provide expert, multi-disciplinary care throughout the world.

References [1] Conway S, Balfour-Lynn IM, De Rijcke K, Drevinek P, et al. European Cystic Fibrosis Society Standards of Care; Framework for the Cystic Fibrosis Centre. J Cystic Fibrosis 2014;13(Suppl. 1):s3–s22. [2] Smyth AR, Bell SC, Bojcin S, Bryon M, et al. European Cystic Fibrosis Society Standards of Care: Best Practice Guidelines. J Cystic Fibrosis 2014;13(Suppl. 1):s23–42. [3] Stern M, Bertrand DP, Bignammi E, et al. European Cystic Fibrosis Society Standards of Care. Quality Management in Cystic Fibrosis Eur J Cystic Fibrosis 2014;13(Suppl. 1):s43–59. [4] Cystic Fibrosis Foundation Patient Registry. Annual data report; 2013 1–32 (Bethesda, Maryland).

[5] Schechter MS, Gutierrez HH. Improving the quality of care for patients with cystic fibrosis. Curr Opin Pediatr 2010;22(3):296–301. http:// dx.doi.org/10.1097/MOP.0b013e328339550e. [6] Colombo C, Littlewood J. The implementation of standards of care in Europe: state of the art. J Cyst Fibros 2011;10(Suppl. 2):S7–S15. http:// dx.doi.org/10.1016/S1569-1993(11)60003-9. [7] Gutierrez HH, Sanchez I, Schidlow DV. Cystic fibrosis care in Chile. Curr Opin Pulm Med 2009. http://dx.doi.org/10.1097/MCP.0b013e328330db7a. [8] Mogayzel PJ, Dunitz J, Marrow LC, Hazle LA. Improving chronic care delivery and outcomes: the impact of the cystic fibrosis Care Center Network. BMJ Qual Saf 2014;23(Suppl. 1):i3–8. http://dx.doi.org/ 10.1136/bmjqs-2013-002363. [9] Becerril-Montekio V, Reyes J de D, Manuel A. The health system of Chile. Salud Publica Mex 2011;53(Suppl. 2):s132–43. [10] Rodriguez VA. Fibrosis Quistica en Argentina. Neumol Pediatr (Chile) 2010;5:37–8. [11] de Abreu e Silva FA. Fibrosis Quistica en Brasil. Neumol Pediatr (Chile) 2010;5:39–41. [12] Astudillo P. Fibrosis Quistica en Chile. Neumol Pediatr (Chile) 2010;5:42–3.

Hector H. Gutierrez, M.D. Corresponding author. Department of Pediatrics, Cystic Fibrosis Center, The University of Alabama at Birmingham, 1600 7th Avenue South, Lowder 620, Birmingham, AL 35233, USA E-mail address: [email protected]

Peter J. Mogayzel Jr., M.D., Ph.D., M.B.A. Department of Pediatrics, The Johns Hopkins Medical Institutions, Cystic Fibrosis Center, 200 North Wolfe Street, Baltimore, MD 21287, USA E-mail address: [email protected]

ESCF care guidelines beyond Europe.

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