title: Engaging patients and caregivers in patient-centered outcomes research on advanced stage lung cancer: insights from patients, caregivers, and providers.
abstract: Participatory and patient-centered approaches to cancer research have been highlighted as the most appropriate means of engaging patients in the conduct of clinical research. However, there is a paucity of patient-centered outcomes research (PCOR) on lung cancer. Previous studies seeking to define lung cancer treatment success have generally not included patients' and caregivers' perceptions and views in treatment decision-making. Additionally, little is known about effective strategies for the engagement of lung cancer patients in PCOR. We sought to gain insights into the perceptions of patients, caregivers, and providers on lung cancer treatment success, as well as on strategies for patient engagement in lung cancer PCOR. Four focus groups were conducted with provider, patient, and caregiver participants from four cancer centers in Nebraska and South Dakota. A total of 36 providers, patients, and caregivers participated in this study. Patients and caregivers confirmed that survival alone should not be the measure of lung cancer treatment success and that definitions of treatment success should emphasize factors such as effective clinical guidance throughout treatment, symptom management, functionality, and quality of life. Clinician participants noted that the definition of treatment success evolved over time and appeared to be linked to patients' experiences with chemotherapy. Participants identified barriers to and facilitators of research participation and suggested strategies for the recruitment and retention of research participants. Our study indicates that patients can successfully play active and engaged roles in clinical research, ranging from participant to partner. Judging from the enthusiasm of our focus group attendees, patients and caregivers want to participate and be engaged in clinical research.
authors.affiliation: College of Public Health (COPH), Department of Epidemiology, University of Nebraska Medical Center (UNMC), Omaha, NE, USA, kmislam@unmc.edu.
authors.forename: K M
authors.initials: KM
authors.lastname: Islam
authors.forename: Samuel T
authors.initials: ST
authors.lastname: Opoku
authors.forename: Bettye A
authors.initials: BA
authors.lastname: Apenteng
authors.forename: Ann
authors.initials: A
authors.lastname: Fetrick
authors.forename: June
authors.initials: J
authors.lastname: Ryan
authors.forename: M
authors.initials: M
authors.lastname: Copur
authors.forename: Addison
authors.initials: A
authors.lastname: Tolentino
authors.forename: Irfan
authors.initials: I
authors.lastname: Vaziri
authors.forename: Apar K
authors.initials: AK
authors.lastname: Ganti
mesh_terms: D017028:Caregivers; D003657:Decision Making; D017144:Focus Groups; D006282:Health Personnel; D006801:Humans; D008175:Lung Neoplasms / Q000517:prevention & control*; D010166:Palliative Care; D063868:Patient Outcome Assessment; D010358:Patient Participation; D018802:Patient-Centered Care / Q000379:methods*; D010817:Physician-Patient Relations; D011788:Quality of Life; D013023:South Dakota
references.citation: Appl Nurs Res. 2010 Nov;23(4):233-7
references.pmid: 21035034
references.citation: J Gen Intern Med. 2003 Nov;18(11):893-902
references.pmid: 14687274
references.citation: Oncol Nurs Forum. 2011 Sep;38(5):542-52
references.pmid: 21875841
references.citation: J Cancer Educ. 2006 Winter;21(4):237-42
references.pmid: 17542716
references.citation: J Oncol Pract. 2013 Nov;9(6):267-76
references.pmid: 24130252
references.citation: BMJ. 2007 Mar 10;334(7592):521
references.pmid: 17329313
references.citation: J Cancer Educ. 2013 Jun;28(2):237-46
references.pmid: 23605172
references.citation: J Clin Oncol. 2003 Jul 1;21(13):2589-96
references.pmid: 12829680
references.citation: Health Expect. 2006 Mar;9(1):3-12
references.pmid: 16436157
references.citation: Support Care Cancer. 2013 Nov;21(11):3137-42
references.pmid: 23864288
references.citation: Lung Cancer. 2005 Nov;50(2):143-54
references.pmid: 16112249
references.citation: Oncol Nurs Forum. 2000 Oct;27(9):1435-8
references.pmid: 11058975
references.citation: J Clin Oncol. 2003 Mar 1;21(5):830-5
references.pmid: 12610181
references.citation: N Engl J Med. 2014 Feb 13;370(7):592-5
references.pmid: 24521104
references.citation: J Clin Oncol. 2009 May 20;27(15):2489-95
references.pmid: 19332716
references.citation: Qual Health Res. 2014 Jan;24(1):46-54
references.pmid: 24277776
references.citation: J Oncol Pract. 2013 Mar;9(2):e40-7
references.pmid: 23814523
references.citation: J Pain Symptom Manage. 2008 Apr;35(4):347-55
references.pmid: 18243642
references.citation: Eur J Cancer. 2011 Jul;47(10):1490-7
references.pmid: 21454072
references.citation: J Thorac Oncol. 2011 Jan;6(1):98-102
references.pmid: 21150469