CFDB - Cystic Fibrosis DataBase

primary studies published RCT

Embedded Specialist Palliative Care in Cystic Fibrosis: Results of a Randomized Feasibility Clinical Trial.

Study design (if review, criteria of inclusion for studies)

Single-site, equal-allocation randomized pilot study


50 Adults with CF age ≥18 years with any of the following: FEV(1)% predicted ≤50, ≥2 CF-related hospitalizations in the past 12 months, supplemental oxygen use, or noninvasive mechanical ventilation use, and moderate-or-greater severity of any symptoms on the Edmonton Symptom Assessment Scale. Mean age 38, baseline mean FEV(1)% predicted 41.8 (usual care), and 41.2 (intervention).


ts with CF to intervention (n = 25) or usual care (n = 25),

Outcome measures

Intervention visit completion, data completements, participant ratings of intervention acceptability and benefit, and intervention delivery fidelity.

Main results

No participants withdrew, five were lost to follow-up, and two died (88% retention). In the intervention group, 23 of 25 completed all study visits; 94% stated the intervention was not burdensome, and 97.6% would recommend the intervention to others with CF. More than 90% of study visits addressed topics prescribed by intervention manual.

Authors' conclusions

Adding specialist PC to standard clinic visits for adults with CF is feasible and acceptable.

Keywords: non pharmacological intervention - psyco-soc-edu-org; Palliative care; pharmacological_intervention;