Supportive Care in Cancer

, Volume 22, Issue 12, pp 3331–3340

Distress among caregivers of phase I trial participants: a cross-sectional study

  • Elizabeth R. Kessler
  • Angela Moss
  • S. Gail Eckhardt
  • Mark L. Laudenslager
  • Kristin Kilbourn
  • Iris B. Mauss
  • Daniel W. Bowles
  • Sharon Hecker
  • Diane L. Fairclough
  • Jean S. Kutner
Original Article

DOI: 10.1007/s00520-014-2380-3

Cite this article as:
Kessler, E.R., Moss, A., Eckhardt, S.G. et al. Support Care Cancer (2014) 22: 3331. doi:10.1007/s00520-014-2380-3

Abstract

Purpose

The number of patients with cancer enrolling in phase I trials is expected to increase as these trials incorporate patient selection and exhibit greater efficacy in the era of targeted therapies. Despite the fact that people with advanced cancer often require a caregiver, little is known about the experience of caregivers of people enrolling in oncology phase I clinical trials. We conducted a cross-sectional study assessing the distress and emotion regulation of caregivers of phase I trial participants to inform the design of future interventions targeting the unique needs of this population.

Methods

Caregivers of oncology patients were approached at the patient’s phase I clinical trial screening visit. Caregiver participants completed a one-time survey incorporating validated instruments to comprehensively assess distress and emotion regulation. Basic demographic information about both the caregiver and patient was collected.

Results

Caregivers exhibited greater distress than population norms. Emotion regulation was also moderately impaired. Respondents identified positive aspects of caregiving despite exhibiting moderate distress.

Conclusion

Enrollment of a patient in a phase I clinical trial is a time of stress for their caregivers. This pilot study demonstrates the feasibility of engaging caregivers of phase I trial participants and the need to better support them through this component of their caregiving experience.

Keywords

Phase ICaregiverDistressClinical trial

Copyright information

© Springer-Verlag Berlin Heidelberg 2014

Authors and Affiliations

  • Elizabeth R. Kessler
    • 1
    • 2
  • Angela Moss
    • 8
  • S. Gail Eckhardt
    • 1
    • 2
  • Mark L. Laudenslager
    • 2
    • 4
  • Kristin Kilbourn
    • 5
  • Iris B. Mauss
    • 6
  • Daniel W. Bowles
    • 1
    • 2
  • Sharon Hecker
    • 2
  • Diane L. Fairclough
    • 3
  • Jean S. Kutner
    • 7
  1. 1.Division of Medical Oncology, Department of MedicineUniversity of Colorado School of MedicineAuroraUSA
  2. 2.University of Colorado Cancer CenterAuroraUSA
  3. 3.Department of Biostatistics and InformaticsColorado School of Public HealthAuroraUSA
  4. 4.Department of PsychiatryUniversity of Colorado School of MedicineAuroraUSA
  5. 5.Department of PsychologyUniversity of Colorado DenverDenverUSA
  6. 6.Department of PsychologyUniversity of CaliforniaBerkeleyUSA
  7. 7.Division of General Internal Medicine, Department of MedicineUniversity of Colorado School of MedicineAuroraUSA
  8. 8.Colorado Health Outcomes ProgramUniversity of Colorado Anschutz Medical CampusAuroraUSA