Primary palliative care skills in CF: Perspectives of adults with CF, caregivers, and CF care team members

Title

Primary palliative care skills in CF: Perspectives of adults with CF, caregivers, and CF care team members

Creator

Dellon EP; Basile M; Hobler M R; Georgiopoulos A; Goggin JL; Chen E; Goss CH; Hempstead SE; Faro A; Kavalieratos D

Identifier

Publisher

Pediatric Pulmonology

Date

2018

Subject

advance care planning; hospice; clinical assessment; pain assessment; education; palliative therapy; major clinical study; lung; prognosis; caregiver; skill; conference abstract; human; child; female; male; controlled study; adult; perception; awareness; depression assessment; Kruskal Wallis test

Description

Background: "Primary" palliative care (PC) skills for CF care teams are not clearly defined, but in general for serious illness include managing basic physical and emotional symptoms, and having basic discussions about prognosis, goals, suffering, and code status. Complex symptom management and addressing conflicts around goals and decisions are considered "specialty" PC skills for which PC consultation may be appropriate. We aimed to understand primary PC skills of CF care teams from the perspectives of team members, individuals with CF, and family caregivers. Methods: CF care team members ("providers"), adults with CF ("patients"), and family caregivers ("caregivers") rated the ability of CF care teams to provide various aspects of PC using a 5-point scale from "poor" to "excellent." Median ratings were compared between and among groups using Mann-Whitney and Kruskal-Wallis tests. Results: A total of 520 participants, including 70 patients, 100 caregivers, and 350 providers, completed surveys. CF care teams consistently rated their PC skills higher than patients or caregivers rated providers' skills. Providers rated their teams "very good" at pain and depression assessments, discussing lung transplant, and discussing prognosis, and "good" at discussing advance care planning (ACP), code status, end of life, and hospice. Patients and caregivers agreed that teams provide "very good" pain assessment, but rated teams "good" at assessing depression (P<0.001) and discussing prognosis (P=0.006), and "poor" at discussing lung transplant (P<0.001), ACP (P<0.001), code status (P<0.001), end of life (P<0.001), and hospice (P<0.001). Providers, patients, and caregivers affiliated with adult CF care teams rated teams more highly then providers, patients, and caregivers affiliated with pediatric teams at discussing lung transplant (P<0.001), end of life (P=0.006), ACP (P<0.001), code status (P=0.012), and hospice (P=0.016). A majority of patients (69%) and caregivers (60%) felt CF care teams should definitely receive more PC training. Conclusions: Discrepancies exist among patient/caregiver and provider perceptions of PC skills in CF, and skills of adult and pediatric teams may differ. While patients, caregivers, and providers agree that CF care teams are skilled in some "primary" PC skills like pain and depression assessment and discussing prognosis, patients and caregivers feel providers' skills are lacking in discussing lung transplant, ACP, code status, end of life, and hospice. Education for all groups could promote awareness of PC, and CF care teams may benefit from specific PC training to enhance "primary" PC skills as well as understanding when and how to utilize specialty PC services.

Citation List Month

December 2018 List

Collection

Citation

Dellon EP; Basile M; Hobler M R; Georgiopoulos A; Goggin JL; Chen E; Goss CH; Hempstead SE; Faro A; Kavalieratos D, “Primary palliative care skills in CF: Perspectives of adults with CF, caregivers, and CF care team members,” Pediatric Palliative Care Library, accessed July 30, 2021, https://pedpalascnetlibrary.omeka.net/items/show/15822.

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