Qualitative inquiry: a method for validating patient perceptions of palliative care while enrolled on a cancer clinical trial

Christina Slota; Connie M Ulrich; Claiborne Miller-Davis; Karen Baker; Gwenyth R Wallen

doi:10.1186/1472-684X-13-43

Qualitative inquiry: a method for validating patient perceptions of palliative care while enrolled on a cancer clinical trial

BMC Palliat Care. 2014 Sep 5:13:43. doi: 10.1186/1472-684X-13-43. eCollection 2014.

Authors

Christina Slota¹, Connie M Ulrich¹, Claiborne Miller-Davis², Karen Baker³, Gwenyth R Wallen²

Affiliations

¹ Department of Medical Ethics and Health Policy, New Courtland Center for Transitions and Health, University of Pennsylvania School of Nursing, Philadelphia, USA.
² National Institutes of Health Clinical Center, 10 Center Drive, 2B-09, Bethesda, MD 20892, USA.
³ Pain and Palliative Care Service, National Institutes of Health Clinical Center, 10 Center Drive, 2-1733 MSC 1517, Bethesda, MD 20892, USA.

Abstract

Background: Palliative care is a vital component of patient-centered care. It has increasingly become central to the management and care of seriously ill patients by integrating physical, psychosocial, and spiritual supportive services. Through qualitative inquiry, this paper examines cancer patients' perceptions of the process and outcomes of the pain and palliative care consultative services they received while enrolled in a clinical trial.

Methods: A qualitative analysis of open-ended questions was conducted from a sub-sample of patients (n = 34) with advanced cancers enrolled in a randomized controlled trial exploring the efficacy of a palliative care consult service. Two open-ended questions focused on patient perceptions of continued participation on their primary cancer clinical trials and their perceptions of interdisciplinary communication.

Results: THREE OVERARCHING THEMES EMERGED WHEN ASKED WHETHER RECEIVING PAIN AND PALLIATIVE CARE SERVICES MADE THEM MORE LIKELY TO REMAIN ENROLLED IN THEIR PRIMARY CANCER CLINICAL TRIAL: patients' past experiences with care, self-identified personal characteristics and reasons for participation, and the quality of the partnership. Four themes emerged related to interdisciplinary communication including: the importance of developing relationships, facilitating open communication, having quality communication, and uncertainty about communication between the cancer clinical trial and palliative care teams.

Conclusions: Our findings suggest the importance of qualitative inquiry methods to explore patient perceptions regarding the efficacy of palliative care services for cancer patients enrolled in a cancer clinical trial. Validation of patient perceptions through qualitative inquiry regarding their pain and palliative care needs can provide insight into areas for future implementation research.

Trial registration: NIH Office of Human Subjects Research Protection OHSRP5443 and University of Pennsylvania 813365.

Keywords: Cancer clinical trial; Communication; Pain; Palliative care.