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Communicating “cure” to pediatric oncology patients: a mixed‐methods study


Essig, Stefan; Michel, Gisela; Dupont, Carole; Kiss, Alexander; Bergstraesser, Eva; Tinner, Eva Maria; Kuehni, Claudia E (2019). Communicating “cure” to pediatric oncology patients: a mixed‐methods study. Pediatric Blood & Cancer, 66(6):e27661.

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.

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.

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Additional indexing

Item Type:Journal Article, refereed, original work
Communities & Collections:04 Faculty of Medicine > University Children's Hospital Zurich > Medical Clinic
Dewey Decimal Classification:610 Medicine & health
Uncontrolled Keywords:Pediatrics, Perinatology, and Child Health, Oncology, Hematology, aftercare; cancer; communication; delivery of health care; fear; motivation; oncology; pediatricians; prognosis; survivors
Language:English
Date:1 June 2019
Deposited On:06 Feb 2020 16:17
Last Modified:06 Feb 2020 16:17
Publisher:Wiley-Blackwell Publishing, Inc.
ISSN:1545-5009
OA Status:Closed
Publisher DOI:https://doi.org/10.1002/pbc.27661
PubMed ID:30729685
Project Information:
  • : FunderH2020
  • : Grant ID713279
  • : Project TitleCAROLINE - Collaborative Research Fellowships for a Responsive and Innovative Europe
  • : FunderSNSF
  • : Grant IDPZ00P3_121682
  • : Project TitleFollow-up care after childhood and young adult cancer
  • : FunderSNSF
  • : Grant IDPZ00P3_141722
  • : Project TitleFollow-up care after childhood and young adult cancer

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Language: English
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Embargo till: 2020-06-01