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Relationships between health literacy, having a cancer care coordinator, and long-term health-related quality of life among cancer survivors

Abstract

Purpose

Care coordination is a strategy to reduce healthcare navigation challenges for cancer patients. The objectives of this study were to assess the association between having a cancer care coordinator (CCC) and long-term health-related quality of life (HRQoL), and to evaluate whether this association differed by level of health literacy.

Methods

A population-based sample of survivors diagnosed with breast, prostate, or colorectal cancer in 2015 from the Iowa Cancer Registry participated in an online survey conducted in 2017–2018 (N = 368). Chi-squared tests and logistic regression were used to model the association between patient characteristics and having a cancer care coordinator. Linear regression was used to model the association between patient perception of having a cancer care coordinator and post-treatment physical or mental HRQoL by differing levels of health literacy while controlling for sociodemographic and clinical factors.

Results

Most survivors (81%) reported having one healthcare professional who coordinated their cancer care. Overall, patient perception of having a coordinator was not significantly associated with physical HRQoL (p = 0.118). However, participants with low health literacy (21%) who had a coordinator had significantly higher physical HRQoL scores compared to those who did not (adjusted mean difference 5.2, p = 0.010), while not so for medium (29%) or high (51%) health literacy (p = 0.227, and p = 0.850, respectively; test for interaction p = 0.001). Mental HRQoL was not associated with having a coordinator in our analyses.

Conclusion

Findings suggest that care coordinators improved post-treatment physical HRQoL, particularly for participants with low health literacy. Care coordinators may be beneficial to the most vulnerable patients struggling to navigate the complex healthcare system during cancer treatment. Future research should focus on the mechanisms by which care coordination may affect post-treatment HRQoL.

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Fig. 1

Data availability

Our data are not deposited in publicly available repositories. However, the datasets used and/or analyzed during the current study are available from the corresponding author on reasonable request.

Code availability

The code used for analysis are available from the corresponding author upon reasonable request.

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Funding

This work was supported under TORFP 2016–07 (Surveillance, Epidemiology and End Results Rapid Response Surveillance Study) HHSN261201300020I/HHSN26100014. This work was also supported by the University of Iowa Holden Comprehensive Cancer Center, which is funded in part by NIH/ NCI P30 CA086862.

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All authors have made (a) substantial contributions to conception and design, or acquisition of data, or analysis and interpretation of data; (b) drafting the article or revising it critically for important intellectual content; (c) final approval of the version to be published.

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Correspondence to Natalie J. Del Vecchio.

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The questionnaire and research protocol were approved by the University of Iowa Institutional Review Board, with a waiver of documentation of consent.

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Patients were provided a letter containing the elements of consent. Given that this was an online survey, a waiver of documentation of consent was obtained from our Institutional Review Board. Participants had to click on an 'Agree' button to consent and enroll in the study.

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Not applicable.

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Del Vecchio, N.J., McDowell, B.D., Carter, K.D. et al. Relationships between health literacy, having a cancer care coordinator, and long-term health-related quality of life among cancer survivors. Support Care Cancer 29, 7913–7924 (2021). https://doi.org/10.1007/s00520-021-06356-w

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Keyword

  • Care coordination; Cancer care; Health literacy; Quality of life; Care coordinator; Patient navigator