Integrating Supportive Care in Cystic Fibrosis
Integrating Supportive Care in Cystic Fibrosis
Individuals living with cystic fibrosis (CF) commonly report high symptom burden, poor
 quality of life, and additional psychosocial stressors; these burdens are particularly
 heightened in advanced stages of the disease. Although supportive care (aka palliative care)
 has been shown to improve many of these outcomes among patients with illnesses such as
 cancer, no clinical trials to date have tested the impact of supportive care for patients
 with CF. The purpose of this pilot randomized clinical trial study is to evaluate the
 feasibility, acceptability, and perceived effectiveness of an embedded supportive care
 intervention, whereby a supportive care specialist will be integrated within the usual care
 experience of patients with advanced CF. The investigators will enroll 50 patients with
 advanced CF, who will be equally randomized to receive this embedded supportive care
 intervention or usual care. Secondary measures include: patient quality of life, mood, coping
 style, satisfaction with care, and symptom burden. This study will provide preliminary data
 to support the development of a larger, definitive, Phase III randomized clinical trial.
As described above.
Inclusion Criteria:

 -  Ability to comprehend English

 -  Advanced CF

 (Any of the following criteria will be indicative of "Advanced CF")

 -  Baseline supplemental oxygen requirement

 -  FEV1 ≤ 50%

 -  Baseline non-invasive mechanical ventilation requirement

 -  ≥ 2 hospitalizations in the past 12 months for respiratory complications related to CF

 Exclusion Criteria:

 -  Prisoners

 -  Females who are pregnant

 -  Prior receipt of specialist SC services

 -  Cognitive impairments

 -  Patients younger than 18 years of age