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Patient activation and treatment decision-making in the context of cancer: examining the contribution of informal caregivers’ involvement

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Abstract

Purpose

The present work investigated the relationship between patient activation, treatment decision-making, and adherence to the prescribed treatment regimen. Given the role of informal caregivers in patient-reported outcomes, it was additionally assessed whether caregiver involvement acted as a moderator of this relationship.

Methods

Survey data collected from 504 cancer survivors were utilized. Structural equation modeling (SEM) controlling for covariates was used to examine the relationship between patient activation measure (PAM), caregiver involvement, and the identified outcomes. Moderator analysis was conducted using multiple group SEM.

Results

Patient activation was significantly associated with treatment planning being reflective of survivors’ goals and values (p < 0.001); adherence to treatment (p = 0.011); and satisfaction (p < 0.001). Caregiver’s involvement significantly moderated the association between activation and adherence to treatment.

Conclusions

Patient activation was positively associated with all three selected outcomes. However, for cancer survivors reporting low rates of caregiver’s involvement, patient activation was not associated with treatment adherence. Research is needed to test and deliver self-management interventions inclusive of informal caregivers.

Implications for Cancer Survivors

Findings supported the need not only to monitor and sustain patient activation across the cancer continuum, but also to assume a dyadic perspective when designing self-management interventions in cancer survivorship.

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Data availability

Data are available upon request.

Code availability

Not applicable.

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Acknowledgements

This article is dedicated to the memory of Dr. Paul R. Swank, a generous mentor and colleague.

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Authors and Affiliations

  1. Graduate College of Social Work, University of Houston, 3511 Cullen Blvd Room 110HA, Houston, TX, 77204-4013, USA

    Chiara Acquati

  2. Department of Health Disparities Research, The UT MD Anderson Cancer Center, 1515 Holcombe Blvd, TX, 77030, Houston, USA

    Chiara Acquati

  3. Health Policy Research Group, University of Oregon, Eugene, OR, 97403-1209, USA

    Judith H. Hibbard

  4. CancerCare, 275 Seventh Ave, NY, 10001, New York, USA

    Ellen Miller-Sonet

  5. School of Social Work, University of Michigan, 1080 S. University Ave, Ann Arbor, MI, 48109, USA

    Anao Zhang

  6. Graduate College of Social Work, University of Houston, 3511 Cullen Blvd, Room 333, Houston, TX, 77204-4013, USA

    Elena Ionescu

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Contributions

CA, JD, and EMS contributed to study conceptualization and design; JD and EMS contributed to acquisition of data; CA, JD, ES, AZ, and EI contributed to analysis and interpretation of the data. CA, JD, ES, AZ, and EI contributed to drafting of manuscript and critical revisions.

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Correspondence to Chiara Acquati.

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This is a secondary data analysis; participants in the original study completed informed consent documents.

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Conflict of interest

Chiara Acquati, Ellen Miller-Sonet, Anao Zhang, and Elena Ionescu have no potential conflict of interest. Judith H. Hibbard is a consultant to and equity stakeholder in Insignia Health.

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The present work was presented at the 2021 ASCO Annual Meeting, June 4-8, 2021 as part of the poster session: Symptoms and Survivorship.

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Acquati, C., Hibbard, J.H., Miller-Sonet, E. et al. Patient activation and treatment decision-making in the context of cancer: examining the contribution of informal caregivers’ involvement. J Cancer Surviv 16, 929–939 (2022). https://doi.org/10.1007/s11764-021-01085-9

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  • DOI: https://doi.org/10.1007/s11764-021-01085-9

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