Palliative Care in CF

Unmet Palliative Care Needs in CF Patients and their Families
Principal Investigator:  C. Goss
Research Grant:  Cystic Fibrosis Foundation (CFF), February 2015 to January 2017

The aim of this study is to identify and explore unmet palliative care needs for patients with moderate or advanced cystic fibrosis and their families and how these needs change over a 6-month period.  The potential domains of unmet needs may include physical, psychological, communication, decision-making about transplantation and other treatments, advanced care planning, and spiritual domains. Identification of the palliative care needs of patients with CF will facilitate the creation of a short screening tool for identifying unmet palliative care needs of individual patients and the adaptation of a tool for advance care planning that addresses the unique features of living with CF. We will also look at the types of interventions that might help address unmet palliative care needs and the barriers and facilitators to each type of intervention.  Interventions, including routine palliative care consultation, facilitated advance care planning, and proactive family conferences, will be explored with semi-structured interviews along with survey tools to examine the acceptability and the barriers and facilitators to these proposed interventions.

Publications from this study include:

Hobler MR, Engelberg RA, Curtis JR, Ramos KJ, Zander MI, Howard SS, Goss CH, Aitken ML. Exploring Opportunities for Primary Outpatient Palliative Care for Adults with Cystic Fibrosis: A Mixed-Methods Study of Patients’ Needs. J Palliat Med. 2018 Apr;21(4):513-521. Epub 2018 Jan 3.