Literature DB >> 31471264

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

Lara Dhingra1, Patricia Walker2, Maria Berdella2, Amy Plachta2, Jack Chen3, Ashley Fresenius4, Julie Balzano5, Malcolm Barrett6, Marilyn Bookbinder3, Kenya Wilder2, Myra Glajchen3, Elinor Langfelder-Schwind2, Russell K Portenoy3.   

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.
Copyright © 2019 European Cystic Fibrosis Society. Published by Elsevier B.V. All rights reserved.

Entities:  

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

Mesh:

Year:  2019        PMID: 31471264     DOI: 10.1016/j.jcf.2019.08.009

Source DB:  PubMed          Journal:  J Cyst Fibros        ISSN: 1569-1993            Impact factor:   5.482


  2 in total

1.  Prevalence of unmet palliative care needs in adults with cystic fibrosis.

Authors:  Elizabeth T Trandel; Joseph M Pilewski; Elisabeth P Dellon; Kwonho Jeong; Jonathan G Yabes; Laura T Moreines; Robert M Arnold; Zachariah P Hoydich; Dio Kavalieratos
Journal:  J Cyst Fibros       Date:  2019-12-18       Impact factor: 5.482

2.  Models of Palliative Care Delivery for Individuals with Cystic Fibrosis: Cystic Fibrosis Foundation Evidence-Informed Consensus Guidelines.

Authors:  Dio Kavalieratos; Anna M Georgiopoulos; Lara Dhingra; Melissa J Basile; Elliot Rabinowitz; Sarah E Hempstead; Albert Faro; Elisabeth P Dellon
Journal:  J Palliat Med       Date:  2020-09-16       Impact factor: 2.947

  2 in total

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