Embedded Specialty Palliative Care Is Feasible, Acceptable, and Perceived to Be Effective in Cystic Fibrosis: Results of a Pilot Randomized Clinical Trial (TH371A)

Abstract

•Appraise the challenges in conducting palliative care interventions among individuals with genetic disorders, such as cystic fibrosis (CF).•Interpret the results of a pilot feasibility trial of an embedded specialty palliative care intervention in cystic fibrosis. People with CF experience myriad physical and emotional burdens, all of which degrade quality of life (QoL). Although specialty palliative care (PC) reduces suffering for individuals with serious illness, no evidence exists for its impact in CF. Conduct the first randomized pilot trial to evaluate the feasibility, acceptability, and perceived effectiveness of embedded specialty PC for patients with CF. Following a needs assessment, we developed a protocolized, patient-centered PC intervention embedding a PC clinician within an adult CF center. Patients receive >4 in-person visits (and follow-up calls as needed) with a PC nurse practitioner, addressing: symptom management, emotional support, advance care planning, and coping. We measured feasibility via enrollment and assessment rates. We conducted semi-structured interviews evaluating acceptability and perceived effectiveness. We randomized 50 adults to intervention plus usual care, or usual care alone (approach-to-randomize rate, 79%). Fifty-six percent of our sample was male, with a median age of 32 (range: 18-67), and median FEV1 of 41% predicted (range: 20-82% predicted) at enrollment. Of 50 randomized, two died and one was lost to follow-up. Sixty-seven percent of participants reported the intervention was not burdensome and 100% agreed/strongly agreed that they were satisfied with the PC clinician’s care. Sixty-seven percent of participants agreed/strongly agreed that the intervention improved their physical symptoms, 62% their QoL, and 100% felt that all patients with CF should receive specialty PC. Interview themes include: 1) appreciation that PC focuses on more than physical symptoms; 2) appreciation that PC was seamlessly integrated within usual CF care, longer clinic appointments notwithstanding; and 3) a desire to have been exposed to specialty PC earlier in their disease. Embedded specialty PC is feasible, acceptable, and perceived to be effective among individuals living with CF.