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BMC Palliat Care. 2015 Aug 19;14:40. doi: 10.1186/s12904-015-0037-8.

Design of, and enrollment in, the palliative care communication research initiative: a direct-observation cohort study.

Author information

1
Family Medicine Research Programs, University of Rochester, 1381 South Avenue, Rochester, NY, 14620, USA. robert_gramling@URMC.Rochester.edu.
2
Family Medicine Research Programs, University of Rochester, 1381 South Avenue, Rochester, NY, 14620, USA. elizabeth_gajary@URMC.Rochester.edu.
3
School of Nursing, University of Rochester, 601 Elmwood Avenue, Box SON, Rochester, NY, 14642, USA. susan_stanek@urmc.rochester.edu.
4
School of Nursing, University of Rochester, 601 Elmwood Avenue, Box SON, Rochester, NY, 14642, USA. nathalie_dougoud@urmc.rochester.edu.
5
School of Nursing, University of Rochester, 601 Elmwood Avenue, Box SON, Rochester, NY, 14642, USA. heather_pyke@urmc.rochester.edu.
6
Family Medicine Research Programs, University of Rochester, 1381 South Avenue, Rochester, NY, 14620, USA. marie_thomas@urmc.rocheter.edu.
7
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.
8
Family Medicine Research Programs, University of Rochester, 1381 South Avenue, Rochester, NY, 14620, USA. mechelle_sanders@urmc.rochester.edu.
9
Purdue University, Matthews Hall, 812 West State Street, West Lafayette, IN, 47907-2060, USA. alexan90@purdue.edu.
10
Family Medicine Research Programs, University of Rochester, 1381 South Avenue, Rochester, NY, 14620, USA. ronald_epstein@urmc.rochester.edu.
11
Family Medicine Research Programs, University of Rochester, 1381 South Avenue, Rochester, NY, 14620, USA. kevin_fiscella@urmc.rochester.edu.
12
University of Arizona, 301 Learning Services Building, 1512 East First St., Tucson, AZ, 85721, USA. dgl@email.arizona.edu.
13
Palliative Care Program, University of Rochester Medical Center, 601 Elmwood Avenue, Box 687, Rochester, NY, 14642, USA. susan_ladwig@urmc.rochester.edu.
14
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.
15
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.
16
School of Nursing, University of Rochester, 601 Elmwood Avenue, Box SON, Rochester, NY, 14642, USA. sally_norton@urmc.rochester.edu.

Abstract

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.

PMID:
26286538
PMCID:
PMC4544824
DOI:
10.1186/s12904-015-0037-8
[Indexed for MEDLINE]
Free PMC Article

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