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Long-term implications of autologous HCT for caregiver quality of life: how does the survivor’s health matter?

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Abstract

Introduction

This study examines caregiver quality of life (CQOL) 3–26 years after autologous hematopoietic cell transplantation (HCT) for patients with lymphoma. Using a framework that views the patient-caregiver dyad as a system of mutual influence, we argue that CQOL is associated with survivor functional health status and sense of personal control.

Methods

Ninety-nine autologous HCT survivor-caregiver dyads participated. CQOL was measured using the Caregiver Quality of Life Scale-Cancer. Survivor functional health status was assessed using the Functional Assessment of Cancer Therapy-General. Sense of control was examined using an instrument from the MIDUS II study. Clinical measures were collected from medical records.

Results

After controlling for sociodemographic and clinical covariates, caregivers with higher sense of control had higher CQOL. Poorer survivor functional health was associated with lower CQOL but only when the survivor reported low personal control. When the survivor reported high personal control, functional health was not a factor. Lower CQOL was observed for younger and more educated caregivers. In contrast, more education among survivors was linked to higher CQOL.

Conclusion

These results (1) support using a mutuality framework for the study of long-term outcomes of caregivers, (2) suggest the importance of ongoing support for caregivers, and (3) help identify caregivers at risk for poorer adaptation. Poorer survivor functional health is a risk factor, but its adverse implications can be offset by higher caregiver and survivor sense of control, a psychological resource aiding caregiver adaptation. These findings can inform the development of support programs for long-term caregivers.

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Acknowledgments

We would like to acknowledge the efforts of the study participants, the dedication of Katelyn Ann Tynan and other undergraduate research assistants, and the extensive support and guidance of the late Dr. Karl Blume, who encouraged and inspired this work.

Funding

This research was supported by a Stanford Cancer Center Internal Grant.

Author information

Authors and Affiliations

  1. Sociology, University of Alabama Birmingham, Birmingham, AL, USA

    Irena Stepanikova

  2. Institute for Research in Social Sciences (IRiSS), Stanford University, Stanford, CA, USA

    Irena Stepanikova & Karen Powroznik

  3. Sociology, Stanford University, Stanford, CA, USA

    Karen Cook

  4. Stanford University Medical Center, Stanford University, Stanford, CA, USA

    D. Kathryn Tierney

  5. Corvus Pharmaceuticals Inc, Burlingame, CA, USA

    Ginna Laport

Authors
  1. Irena Stepanikova
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  2. Karen Powroznik
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  3. Karen Cook
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  4. D. Kathryn Tierney
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  5. Ginna Laport
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Corresponding author

Correspondence to Irena Stepanikova.

Ethics declarations

Ethical background of the study

The study was approved by Stanford University IRB, eProtocol 25865, Title: The Psychosocial Impact of Blood and Marrow Transplantation in Patients with Lymphoma. Currently approved until October 31, 2018. The manuscript has not been previously published and is not under consideration in the same or substantially similar form in any other peer-reviewed media or outlets. All the authors listed have contributed sufficiently to the project to be included as authors, and all those who are qualified to be authors are listed in the author byline.

Conflict of interest

The authors declare that they have no conflict of interest.

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Stepanikova, I., Powroznik, K., Cook, K. et al. Long-term implications of autologous HCT for caregiver quality of life: how does the survivor’s health matter?. Support Care Cancer 27, 191–198 (2019). https://doi.org/10.1007/s00520-018-4311-1

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  • DOI: https://doi.org/10.1007/s00520-018-4311-1

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