1. Communicating 'cure' to pediatric oncology patients: A mixed‐methods study
- Author
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Carole Dupont, Alexander Kiss, Claudia E. Kuehni, Eva Bergstraesser, Eva Maria Tinner, Stefan Essig, and Gisela Michel
- Subjects
Adult ,Male ,Pediatrics ,medicine.medical_specialty ,Adolescent ,Aftercare ,Young Adult ,03 medical and health sciences ,Mental distress ,0302 clinical medicine ,Cancer Survivors ,Neoplasms ,Surveys and Questionnaires ,Pediatric oncology ,Humans ,Medicine ,Registries ,Child ,Oncologists ,business.industry ,Questionnaire ,Cancer ,Hematology ,Prognosis ,medicine.disease ,Focus group ,humanities ,Confidence interval ,3. Good health ,Health Communication ,Oncology ,Child, Preschool ,030220 oncology & carcinogenesis ,Pediatrics, Perinatology and Child Health ,Female ,Registry data ,Thematic analysis ,business ,Delivery of Health Care ,Follow-Up Studies ,030215 immunology - 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.
- Published
- 2019
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