Follow-up care experiences and perceived quality of care among long-term survivors of breast, prostate, colorectal, and gynecologic cancers.

Abstract

Post-treatment follow-up represents a crucial aspect of quality cancer care; however, data are lacking regarding follow-up care experiences, perception of provider involvement in care, and perceived quality of care from diverse samples of long-term survivors diagnosed as adults. Questionnaires were mailed in 2005 to 2006 to breast, prostate, colorectal, endometrial, and ovarian cancer survivors (4 to 14 years after diagnosis), sampled from California SEER cancer registries. Most survivors (n = 1,490) reported recent follow-up care (68.7%), generally from oncology specialists only (47.4%) or shared between oncology and primary care providers (PCPs; 27.6%). Most survivors reported follow-up care advice (79.9%); fewer reported late-effects advice or receipt of a treatment summary (41.7% and 19.9%, respectively). Survivors who identified a PCP as their main follow-up care physician were as likely as those identifying an oncology specialist to rate their care as high quality (odds ratio [OR], 2.56; 95% CI, 0.98 to 6.74); however, survivors who could not identify a main follow-up care provider were less likely to report high-quality care (OR, 0.20; 95% CI, 0.08 to 0.50). Compared with follow-up care by an oncology specialist only, care by a PCP only was associated with a lower quality-of-care rating (OR, 0.34; 95% CI, 0.13 to 0.91), but there was no significant difference in quality rating by survivors when care was shared by an oncology specialist and PCP compared with an oncology specialist only. Long-term survivors commonly report follow-up care years after their diagnosis; however, many patients' follow-up lacks important components. Care is more likely to be rated as high quality when one main provider is identified and an oncology specialist is involved.