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

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.