Implementing early palliative care education in cystic fibrosis

Abstract

Background: People with CF and their families carry the burden of life-limiting illness. Palliative care enhances quality of life for people with serious and chronic illnesses. Opportunities are numerous to introduce palliative care before patients with CF develop advanced disease, but there is no standardized approach to incorporating palliative care into routine CF care. Objective: We aimed 1) to test the feasibility of incorporating standardized palliative care education into routine CF care and 2) to assess knowledge and perceptions of palliative care before and after providing palliative care education. Methods: We designed a 30-minute interactive palliative care education session utilizing existing palliative care resources and data from qualitative interviews with key stakeholders. Patients ages >13 years and a designated family caregiver are eligible to participate in this ongoing study. Participants complete surveys to assess knowledge and perceptions of palliative care before and after the education session during a routine clinic visit. The session includes a definition of palliative care, descriptions of 7 components of palliative care, and illustrative case examples. Change in knowledge and perceptions are measured using non-parametric Mann-Whitney U tests. Results: Twenty-seven participants have completed the education session to date, including 9 adult patients, 8 adolescent patients, and 10 caregivers. Median age of adult patients was 28 years, median FEV1 50% predicted. Median age of pediatric patients was 16.5 years, median FEV1 89% predicted. Participants reported low baseline knowledge of palliative care, with median composite knowledge score of 18 out of a maximum of 50. Many reported emotional uncertainty and concern related to the subject matter. After the education session, which participants felt was helpful, easy to understand, and contained an appropriate amount of information, knowledge scores increased significantly (post-session median knowledge score 37 of 50; p<0.01): participants understood the definition of palliative care, when it may be appropriate for people with CF, and how it could benefit people with CF. Participants described less fear and uncertainty after learning about palliative care and endorsed feeling relieved and more hopeful. Recruitment is ongoing at 3 CF care centers. Follow-up surveys will be conducted at 3 months to assess knowledge retention and perceptions over time. Medical records of patient participants are being examined for subsequent documentation of discussions about palliative care and/or referrals for palliative care consultation. Conclusions: Participants' willingness to engage in palliative care education suggests openness to discussions with CF providers about palliative care. Preliminary data indicate that standardized, relevant palliative care education can be provided within a reasonable amount of time in the outpatient setting and is well-received by adolescents and adults with CF and their caregivers. Future directions include dissemination of this educational session to other CF care centers.