Survivorship and the chronic cancer patient: Patterns in treatment‐related effects, follow‐up care, and use of survivorship care plans

• Published in: Cancer Vol. 123; no. 21; pp. 4268 - 4276
• Main Authors: Frick, Melissa A., Vachani, Carolyn C., Bach, Christina, Hampshire, Margaret K., Arnold‐Korzeniowski, Karen, Metz, James M., Hill‐Kayser, Christine E.
• Format: Journal Article
• Language: English
• Published: United States Wiley Subscription Services, Inc 01-11-2017
• Subjects: Breast Neoplasms - psychology; Breast Neoplasms - therapy; Cancer; chronic cancer; Chronic Disease; Cognitive ability; Communication; Continuity of Patient Care; Dyspnea; Erectile dysfunction; Fatigue; Female; Health care; Humans; Internet; Leukemia; Leukemia - therapy; Lymphedema; Lymphoma - therapy; Male; Metastases; metastasis; Middle Aged; Needs Assessment; Neoplasm Recurrence, Local - therapy; Neoplasms - psychology; Neoplasms - therapy; Neoplasms, Second Primary; Oncology; Patient Education as Topic - methods; Patient Reported Outcome Measures; Patient Satisfaction; Patients; patient‐reported outcomes; Peripheral neuropathy; Primary care; residual cancer; Respiration; Survival; Survivors; survivorship; survivorship care plan; User satisfaction; chronic cancer; patient-reported outcomes; survivorship; metastasis; residual cancer; Internet; survivorship care plan
• ISSN: 0008-543X; 1097-0142
• DOI: 10.1002/cncr.30862

BACKGROUND
The survivorship needs of patients living with chronic cancer (CC) and their use of survivorship care plans (SCPs) have been overlooked and underappreciated.
METHODS
A convenience sample of 39,088 SCPs completed for cancer survivors with an Internet‐based SCP tool was examined; it included 5847 CC survivors (15%; CC was defined as chronic leukemia and/or recurrent/metastatic cancer of another nature). Patient‐reported treatment effects and follow‐up care patterns were compared between CC survivors and survivors treated with curative intent (CI). Responses from a follow‐up survey regarding SCP satisfaction and use were reviewed.
RESULTS
CC survivors had greater odds of experiencing multiple treatment‐related effects than survivors treated with CI; these effects included fatigue, cognitive changes, dyspnea, peripheral neuropathy, lymphedema, and erectile dysfunction. Nearly half of CC survivors were managed by an oncologist alone, and they were less likely than CI patients to be comanaged by a primary care provider and an oncologist. Fewer SCPs were generated by health care providers (HCPs) for CC survivors versus CI survivors. A smaller proportion of CC users versus CI users rated their experience and satisfaction with the SCP tool as very good or excellent, and CC users were less likely to share the HCP summary with their health care team.
CONCLUSIONS
A substantial number of CC survivors, often considered incurable but treatable, seek survivorship support. Tools to facilitate participation, communication, and coordination of care are valuable for these patients, and future iterations of SCPs should be designed to address the particular circumstances of living with CC. Cancer 2017;123:4268–4276. © 2017 American Cancer Society.
Using data obtained from an Internet‐based survivorship care plan tool, this study demonstrates that a substantial number of survivors living with chronic cancer, who are often considered incurable but treatable, seek survivorship information and support. These survivors face particular disparities in survivorship care in comparison with their counterparts treated with curative intent. These disparities include a greater burden of patient‐reported treatment effects, reduced participation of primary care providers in the cancer care team, a lower proportion of health care providers generating survivorship care plans for follow‐up care, and decreased satisfaction with currently available survivorship care plans.