Addressing the burden of illness in adults with cystic fibrosis with screening and triage: An early intervention model of palliative care
Lara Dhingra, Patricia Walker, Maria Berdella, Amy Plachta, Jack Chen, Ashley Fresenius, Julie Balzano, Malcolm Barrett, Marilyn Bookbinder, Kenya Wilder, Myra Glajchen, Elinor Langfelder-Schwind, Russell K Portenoy, Lara Dhingra, Patricia Walker, Maria Berdella, Amy Plachta, Jack Chen, Ashley Fresenius, Julie Balzano, Malcolm Barrett, Marilyn Bookbinder, Kenya Wilder, Myra Glajchen, Elinor Langfelder-Schwind, Russell K Portenoy
Abstract
Background: 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.
Methods: 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.
Results: 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).
Conclusions: 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.
Keywords: Cystic fibrosis; Generalist-level palliative care; Models of care; Screening; Telehealth.
Conflict of interest statement
Declaration of Competing Interest None of the authors have any conflict of interest associated with this research.
Copyright © 2019 European Cystic Fibrosis Society. Published by Elsevier B.V. All rights reserved.
Source: PubMed