Engaging Patients and Caregivers in Patient-Centered Outcomes Research on Advanced Stage Lung Cancer: Insights from Patients, Caregivers, and Providers

Km Islam, Samuel T. Opoku, Bettye A. Apenteng, Ann Fetrick, June Ryan, M. Copur, Addison Tolentino, Irfan Vaziri, Apar K. Ganti

Research output: Contribution to journalArticle

8 Citations (Scopus)

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.

Original languageEnglish (US)
Pages (from-to)796-801
Number of pages6
JournalJournal of Cancer Education
Volume29
Issue number4
DOIs
StatePublished - Jan 1 2014

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Patient Outcome Assessment
Caregivers
Lung Neoplasms
Research
Focus Groups
Therapeutics
Patient Participation

Keywords

  • Advanced stage lung cancer
  • Adverse effects of treatment
  • Caregivers and providers
  • Focus groups
  • Lung cancer patients
  • Patient-centered care
  • Stage IV lung cancer

ASJC Scopus subject areas

  • Oncology
  • Public Health, Environmental and Occupational Health

Cite this

Engaging Patients and Caregivers in Patient-Centered Outcomes Research on Advanced Stage Lung Cancer : Insights from Patients, Caregivers, and Providers. / Islam, Km; Opoku, Samuel T.; Apenteng, Bettye A.; Fetrick, Ann; Ryan, June; Copur, M.; Tolentino, Addison; Vaziri, Irfan; Ganti, Apar K.

In: Journal of Cancer Education, Vol. 29, No. 4, 01.01.2014, p. 796-801.

Research output: Contribution to journalArticle

Islam, Km ; Opoku, Samuel T. ; Apenteng, Bettye A. ; Fetrick, Ann ; Ryan, June ; Copur, M. ; Tolentino, Addison ; Vaziri, Irfan ; Ganti, Apar K. / Engaging Patients and Caregivers in Patient-Centered Outcomes Research on Advanced Stage Lung Cancer : Insights from Patients, Caregivers, and Providers. In: Journal of Cancer Education. 2014 ; Vol. 29, No. 4. pp. 796-801.
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