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

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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.

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Conflict of Interest and Sources of Funding

This project was supported in part by the Patient-Centered Outcomes Research Institute (PCORI) Contract #CE-12-11-4351. The contents are solely the responsibility of the authors and do not necessarily represent the official views of PCORI.

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Authors and Affiliations

  1. College of Public Health (COPH), Department of Epidemiology, University of Nebraska Medical Center (UNMC), Omaha, NE, USA

    K. M. Islam

  2. COPH, Department of Health Services Research, Administration, and Policy UNMC, Omaha, NE, USA

    Samuel T. Opoku & Ann Fetrick

  3. College of Public Health, Department of Health Policy and Management, Georgia Southern University Jiann-Ping Hsu, Statesboro, GA, USA

    Bettye A. Apenteng

  4. Nebraska Cancer Coalition, Lincoln, NE, USA

    June Ryan

  5. Saint Francis Cancer Treatment Center of Grand Island, Grand Island, NE, USA

    M. Copur

  6. Avera Cancer Institute of Sioux Falls, Sioux Falls, SD, USA

    Addison Tolentino

  7. Callahan Cancer Center of North Platte, North Platte, NE, USA

    Irfan Vaziri

  8. Veterans Healthcare Administration, Nebraska-Western Iowa Health Care System, Omaha, NE, USA

    Apar K. Ganti

  9. Division of Oncology and Hematology, UNMC, Omaha, NE, USA

    Apar K. Ganti

Authors
  1. K. M. Islam
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  2. Samuel T. Opoku
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  3. Bettye A. Apenteng
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  4. Ann Fetrick
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  5. June Ryan
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  6. M. Copur
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  7. Addison Tolentino
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  8. Irfan Vaziri
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  9. Apar K. Ganti
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Correspondence to K. M. Islam.

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Islam, K.M., Opoku, S.T., Apenteng, B.A. et al. Engaging Patients and Caregivers in Patient-Centered Outcomes Research on Advanced Stage Lung Cancer: Insights from Patients, Caregivers, and Providers. J Canc Educ 29, 796–801 (2014). https://doi.org/10.1007/s13187-014-0657-3

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  • DOI: https://doi.org/10.1007/s13187-014-0657-3

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