Abstract
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. 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. 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). Not all physicians tell survivors they have been cured; their choices depend on the cancer type and risk of late effects.
Highlights
More than 80% of childhood cancer patients currently survive at least 5 years after diagnosis.[1]
Cure has been defined as the recovery from the original cancer,[9,10] i.e., physicians discussing the cancer-related prognosis with children and parents as a likelihood or hope of cure.[10,11]
We first conducted a quantitative analysis to determine the proportion of childhood cancer survivors who are told by their physicians that they have been cured, and which factors determine whether this is done
Summary
More than 80% of childhood cancer patients currently survive at least 5 years after diagnosis.[1]. Scientific studies do not mention cure but report survival and remission. Background/rationale Objectives Methods Study design Setting Participants. Explain the scientific background and rationale for the investigation being reported. Locations, and relevant dates, including periods of recruitment, exposure, follow-up, and data collection (a) Cohort study—Give the eligibility criteria, and the sources and methods of selection of participants. Case-control study—Give the eligibility criteria, and the sources and methods of case ascertainment and control selection. Cross-sectional study—Give the eligibility criteria, and the sources and methods of selection of participants (b) Cohort study—For matched studies, give matching criteria and number of exposed and unexposed. 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
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