TY - JOUR
T1 - Specialty palliative care in COVID-19
T2 - Early experiences from the palliative care quality collaborative
AU - Kamal, Arif H.
AU - Thienprayoon, Rachel M.
AU - Aldridge, Melissa
AU - Bull, Janet
AU - Fazzalaro, Kristyn
AU - Meier, Diane E.
AU - Mueller, Lance
AU - Rodgers, Phillip E.
AU - McKenna, Kelly A.
AU - Pantilat, Steven Z.
N1 - Funding Information:
The PCQC acknowledges the tireless and dedicated palliative care professionals who generously contributed to the COVID19 registry and the Gordon and Betty Moore Foundation and Cambia Health Foundation for supporting the resources required.
Publisher Copyright:
© Copyright 2021, Mary Ann Liebert, Inc., publishers 2021.
PY - 2021/11/1
Y1 - 2021/11/1
N2 - Background: The COVID-19 pandemic has spurred unprecedented need for specialty palliative care. The Palliative Care Quality Collaborative (PCQC) provides unique infrastructure for rapid data collection and analysis. Objectives: To capture and describe real-time, real-world experiences of specialty palliative care professionals caring for patients with COVID-19 through a rapid reporting tool and registry. Setting: Palliative care clinicians consulted for patients either positive for COVID-19, under investigation for COVID-19, or recovered from COVID-19. Design: The PCQC created a 13-item COVID-19 case report form (CRF), modeled after the PCQC core dataset for specialty palliative care quality measurement. Twelve items offered discrete answer choices and one was open-ended. The CRF was publicized widely (e.g., social media, e-mail list serves) and completed through a link on the PCQC website. Results: Three hundred six reports (298 adult, 8 pediatric) were submitted between April 6, 2020 and October 7, 2020. The majority of patients (83%) were 50 years or older; 25% were 80 or older, and 78% were COVID-19 positive. Male gender identity was significantly more prevalent than female (58% vs. 40%, p < 0.002). The most common comorbidity was cardiovascular disease (23%). Of adult hospital-based patients, 69% were full code before palliative care consultation versus 28% after (p < 0.05). All pediatric patients were full code before and after palliative care consult. Qualitative themes were strained communication with patients, family visitation challenges, communication barriers between clinicians and families, rapid changes in palliative care medical management, community care options difficult to find, lack of testing in community-based settings, and guardianship and legal challenges. Conclusion: Preliminary data from the first 306 patients reported to the PCQC COVID-19 Registry describe palliative care use concentrated among older and higher risk patients and challenges to the provision of palliative care during this pandemic.
AB - Background: The COVID-19 pandemic has spurred unprecedented need for specialty palliative care. The Palliative Care Quality Collaborative (PCQC) provides unique infrastructure for rapid data collection and analysis. Objectives: To capture and describe real-time, real-world experiences of specialty palliative care professionals caring for patients with COVID-19 through a rapid reporting tool and registry. Setting: Palliative care clinicians consulted for patients either positive for COVID-19, under investigation for COVID-19, or recovered from COVID-19. Design: The PCQC created a 13-item COVID-19 case report form (CRF), modeled after the PCQC core dataset for specialty palliative care quality measurement. Twelve items offered discrete answer choices and one was open-ended. The CRF was publicized widely (e.g., social media, e-mail list serves) and completed through a link on the PCQC website. Results: Three hundred six reports (298 adult, 8 pediatric) were submitted between April 6, 2020 and October 7, 2020. The majority of patients (83%) were 50 years or older; 25% were 80 or older, and 78% were COVID-19 positive. Male gender identity was significantly more prevalent than female (58% vs. 40%, p < 0.002). The most common comorbidity was cardiovascular disease (23%). Of adult hospital-based patients, 69% were full code before palliative care consultation versus 28% after (p < 0.05). All pediatric patients were full code before and after palliative care consult. Qualitative themes were strained communication with patients, family visitation challenges, communication barriers between clinicians and families, rapid changes in palliative care medical management, community care options difficult to find, lack of testing in community-based settings, and guardianship and legal challenges. Conclusion: Preliminary data from the first 306 patients reported to the PCQC COVID-19 Registry describe palliative care use concentrated among older and higher risk patients and challenges to the provision of palliative care during this pandemic.
KW - COVID
KW - COVID-19
KW - PCQC
KW - palliative care
KW - quality registry
UR - http://www.scopus.com/inward/record.url?scp=85115098778&partnerID=8YFLogxK
U2 - 10.1089/jpm.2020.0440
DO - 10.1089/jpm.2020.0440
M3 - Article
C2 - 34160293
AN - SCOPUS:85115098778
SN - 1096-6218
VL - 24
SP - 1689
EP - 1696
JO - Journal of Palliative Medicine
JF - Journal of Palliative Medicine
IS - 11
ER -