Design of, and enrollment in, the palliative care communication research initiative: a direct-observation cohort study.
BACKGROUND
Understanding the characteristics of communication that foster patient-centered outcomes amid serious illness are essential for the science of palliative care. However, epidemiological cohort studies that directly observe clinical conversations can be challenging to conduct in the natural setting. We describe the successful enrollment, observation and data collection methods of the ongoing Palliative Care Communication Research Initiative (PCCRI).


METHODS
The PCCRI is a multi-site cohort study of naturally occurring inpatient palliative care consultations. The 6-month cohort data includes directly observed and audio-recorded palliative care consultations (up to first 3 visits); patient/proxy/clinician self-report questionnaires both before and the day after consultation; post-consultation in-depth interviews; and medical/administrative records.


RESULTS
One hundred fourteen patients or their proxies enrolled in PCCRI during Enrollment Year One (of Three). Seventy percent of eligible patients/proxies were invited to hear about a communication research study (188/269); 60% of them ultimately enrolled in the PCCRI (114/188), resulting in a 42% sampling proportion (114/269 eligible). All PC clinicians at study sites were invited to participate; all 45 participated.


CONCLUSIONS
Epidemiologic study of patient-family-clinician communication in palliative care settings is feasible and acceptable to patients, proxies and clinicians. We detail the successful PCCRI methods for enrollment, direct observation and data collection for this complex "field" environment.
Family Medicine Research Programs, University of Rochester, 1381 South Avenue, Rochester, NY, 14620, USA. robert_gramling@URMC.Rochester.edu.
Robert
R
Gramling
Family Medicine Research Programs, University of Rochester, 1381 South Avenue, Rochester, NY, 14620, USA. elizabeth_gajary@URMC.Rochester.edu.
Elizabeth
E
Gajary-Coots
School of Nursing, University of Rochester, 601 Elmwood Avenue, Box SON, Rochester, NY, 14642, USA. susan_stanek@urmc.rochester.edu.
Susan
S
Stanek
School of Nursing, University of Rochester, 601 Elmwood Avenue, Box SON, Rochester, NY, 14642, USA. nathalie_dougoud@urmc.rochester.edu.
Nathalie
N
Dougoud
School of Nursing, University of Rochester, 601 Elmwood Avenue, Box SON, Rochester, NY, 14642, USA. heather_pyke@urmc.rochester.edu.
Heather
H
Pyke
Family Medicine Research Programs, University of Rochester, 1381 South Avenue, Rochester, NY, 14620, USA. marie_thomas@urmc.rocheter.edu.
Marie
M
Thomas
Division of Hospital Medicine and Palliative Care Program, University of California, Clinical Sciences Building Suite C-126, 521 Parnassus Ave, Box 0131, San Francisco, CA, 94143-0131, USA. jenica.cimino@ucsf.edu.
Jenica
J
Cimino
Family Medicine Research Programs, University of Rochester, 1381 South Avenue, Rochester, NY, 14620, USA. mechelle_sanders@urmc.rochester.edu.
Mechelle
M
Sanders
Purdue University, Matthews Hall, 812 West State Street, West Lafayette, IN, 47907-2060, USA. alexan90@purdue.edu.
Stewart C
SC
Alexander
Family Medicine Research Programs, University of Rochester, 1381 South Avenue, Rochester, NY, 14620, USA. ronald_epstein@urmc.rochester.edu.
Ronald
R
Epstein
Family Medicine Research Programs, University of Rochester, 1381 South Avenue, Rochester, NY, 14620, USA. kevin_fiscella@urmc.rochester.edu.
Kevin
K
Fiscella
University of Arizona, 301 Learning Services Building, 1512 East First St., Tucson, AZ, 85721, USA. dgl@email.arizona.edu.
David
D
Gramling
Palliative Care Program, University of Rochester Medical Center, 601 Elmwood Avenue, Box 687, Rochester, NY, 14642, USA. susan_ladwig@urmc.rochester.edu.
Susan
S
Ladwig
Division of Hospital Medicine and Palliative Care Program, University of California, Clinical Sciences Building Suite C-126, 521 Parnassus Ave, Box 0131, San Francisco, CA, 94143-0131, USA. wendy.anderson@ucsf.edu.
Wendy
W
Anderson
Division of Hospital Medicine and Palliative Care Program, University of California, Clinical Sciences Building Suite C-126, 521 Parnassus Ave, Box 0131, San Francisco, CA, 94143-0131, USA. stephen.pantilat@ucsf.edu.
Stephen
S
Pantilat
School of Nursing, University of Rochester, 601 Elmwood Avenue, Box SON, Rochester, NY, 14642, USA. sally_norton@urmc.rochester.edu.
Sally A
SA
Norton
D015331:Cohort Studies; D003142:Communication; D006801:Humans; D010166:Palliative Care / Q000706:statistics & numerical data*; D063868:Patient Outcome Assessment; D018579:Patient Selection; D012106:Research; D011795:Surveys and Questionnaires