RESUMEN
The findings of this body of work are presented in the eight articles included in this supplement. The impact and perspectives of adult and pediatric care teams and patient/families are covered with special attention to mental health care, the financial and personnel impacts within care programs, the experiences of vulnerable and underrepresented patient populations, and implementation of remoting monitoring. Commentaries from colleagues provide a broader perspective, offering reflections on the findings and their implications regarding the future CF care model.
Asunto(s)
COVID-19 , Fibrosis Quística , Prestación Integrada de Atención de Salud/organización & administración , Atención a la Salud/tendencias , Telemedicina , COVID-19/epidemiología , COVID-19/prevención & control , Control de Enfermedades Transmisibles/métodos , Continuidad de la Atención al Paciente , Fibrosis Quística/epidemiología , Fibrosis Quística/terapia , Accesibilidad a los Servicios de Salud/organización & administración , Accesibilidad a los Servicios de Salud/tendencias , Humanos , Innovación Organizacional , SARS-CoV-2 , Telemedicina/organización & administración , Telemedicina/normas , Estados Unidos/epidemiologíaRESUMEN
The Cystic Fibrosis Foundation is a voluntary, nonprofit, health organization whose mission is "to assure the development of the means to cure and control cystic fibrosis and to improve the quality of life for those with the disease." While substantial progress has been made, as evidenced by a marked increase in the median predicted age of survival, much work remains to be done. Ongoing medical programs and activities of the Cystic Fibrosis Foundation, which span basic science, drug discovery, drug development, clinical care, patient education, and advocacy, will be described in this article. The key role of respiratory therapists in the cystic fibrosis community will be highlighted.