Communicating "cure" to pediatric oncology patients: A mixed-methods study

Abstract

Background: Uncertainty about cure puts childhood cancer survivors at risk of mental distress. We asked survivors if they had been told they had been cured and investigated associated factors.

Procedure: We used nationwide registry data and a questionnaire survey for ≥five-year survivors of childhood cancer (n = 301), followed by online focus groups with a purposive sample of Swiss pediatric oncologists (n = 17). Discussions were coded by investigators using thematic analysis.

Results: Overall, 235 among 301 survivors (78%; 95% confidence interval, 73%-83%) reported having been told they were cured. The proportion was 89% (81%-97%) among lymphoma and 84% (77%-91%) among leukemia survivors, but only 49% (33%-65%) among central nervous system tumor survivors. Pediatric oncologists acknowledged that telling survivors they are cured may reassure them that their cancer lies behind them. However, many refrained from telling all patients. Reasons included the possibility of late effects (cure disrupted by a continued need for follow-up care) or late relapse (uncertainty of biological cure), case-by-case strategies (use of "cure" according to individual factors), and reluctance (substitution of noncommittal terms for "cure"; waiting for the patient to raise the topic).

Conclusions: Not all physicians tell survivors they have been cured; their choices depend on the cancer type and risk of late effects.

Keywords: aftercare; cancer; communication; delivery of health care; fear; motivation; oncology; pediatricians; prognosis; survivors.