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J Cyst Fibros. 2019 Aug 27. pii: S1569-1993(19)30841-0. doi: 10.1016/j.jcf.2019.08.009. [Epub ahead of print]

Addressing the burden of illness in adults with cystic fibrosis with screening and triage: An early intervention model of palliative care.

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MJHS Institute for Innovation in Palliative Care, 39 Broadway, 3rd Floor, New York, NY 10006, USA. Electronic address:
The Cystic Fibrosis Center, Division of Pulmonary, Critical Care and Sleep Medicine, Icahn School of Medicine at Mount Sinai, Mount Sinai Beth Israel, First Avenue at 16th Street, New York, NY 10003, USA.
MJHS Institute for Innovation in Palliative Care, 39 Broadway, 3rd Floor, New York, NY 10006, USA.
Southern Nevada Adult Mental Health Services, 6161 W. Charleston Blvd, Las Vegas, NV 89146, USA.
James J. Peters VA Medical Center, 130 West Kingsbridge Road, Bronx, NY 10468, USA.
University of Southern California, Los Angeles, CA 90007, USA.



Novel models that improve generalist-level palliative care for cystic fibrosis (CF) are needed to address the burden of this illness. A screening-and-triage model has the potential to identify clinical problems requiring immediate follow-up by CF professionals. This study describes such a model and its immediate impact on care delivery for CF patients during a two-year period.


Eligible adults completed monthly online screening for sources of distress. If results revealed one or more "indicators of concern" on two consecutive screenings, this triggered an attempted triage by a social worker. Completed triages led to prompt follow-up by CF professionals for clinical problems, if indicated. Process data were summarized and generalized linear mixed models were used to evaluate baseline patient characteristics (symptom distress, quality of life, and sociodemographics) associated with the need for prompt follow-up.


A total of 1,015 monthly surveys were completed by 74 patients; 634 (66 patients) had >1 indicators of concern; and 164 surveys (46 patients) had >1 indicators for two consecutive surveys (e.g., global distress, pain, dyspnea, and psychological symptoms). The 164 attempted triages yielded 84 completed triages (51.2%), of which 39 (46.4%) required prompt follow-up. In multivariable analyses, older patients and those with higher symptom distress at baseline were more likely to require prompt follow-up (p < .05).


Web-based screening that assesses varied domains of distress or burden can identify a subset of CF patients whose clinical problems may benefit from immediate medical or psychological attention. Additional investigations should improve screening efficiency.


Cystic fibrosis; Generalist-level palliative care; Models of care; Screening; Telehealth


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