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Blood cancer survivorship in NCI-Designated Cancer Centers: a study of services, gaps, and access barriers

  • Crystal A. ReinhartEmail author
  • Maria Sae-Hau
  • Carol A. Lee
  • Elisa S. Weiss
Article

Abstract

Purpose

This study explored survivorship services provided at National Cancer Institute (NCI)–Designated Cancer Centers for patients with blood cancer to identify gaps in services, unmet needs, and barriers to access.

Methods

Qualitative interviews with national experts and blood cancer survivors aided the development of an online survey distributed to a survivorship clinic director or staff at 63 NCI-Designated Cancer Centers.

Results

Staff at 71% of centers participated (n = 45). Survivorship needs identified as most important—follow-up for health issues due to treatment side effects, healthy behavior programming, and individual mental health services—were reported as offered at 91%, 84%, and 84% of centers, respectively. However, respondents indicated that satellite centers offered these services 20% of the time or less. Forty-five percent reported that they believed the majority of survivorship needs of patients with blood cancer who have completed treatment were not adequately met by their center or other organizations. Most frequently indicated barriers to accessing services were distance from the patient’s home and lack of primary care physician adherence to best practices or knowledge of late/long-term effects.

Conclusions

To enhance survivorship services for patients with blood cancer, NCI-Designated Cancer Centers and non-profits should focus on increasing access to services for survivors who do not reside near the main center and improving coordination between oncology, mental health, and primary care.

Implications for Cancer Survivors

Understanding survivorship service delivery is an important step toward developing solutions that help survivors seek and access support at their site of care and from other non-profit organizations.

Keywords

Survivorship Hematologic malignancy Health services accessibility 

Notes

Funding information

This study was funded by The Leukemia & Lymphoma Society (#089119).

Compliance with ethical standards

Conflict of interest

Crystal Reinhart and Carol Lee received funding from The Leukemia & Lymphoma Society to conduct this research. Maria Sae-Hau and Elisa Weiss are employed by the funding agency for this study.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed consent

Informed consent was obtained from all individual participants included in the study.

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Copyright information

© Springer Science+Business Media, LLC, part of Springer Nature 2019

Authors and Affiliations

  1. 1.Center for Prevention Research and DevelopmentUniversity of IllinoisChampaignUSA
  2. 2.The Leukemia & Lymphoma SocietyRye BrookUSA
  3. 3.School of Social WorkUniversity of IllinoisChampaignUSA

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