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. Wiley-Liss 10.1002/pbc.27661

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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.

Item Type:

Journal Article (Original Article)

Division/Institute:

04 Faculty of Medicine > Pre-clinic Human Medicine > Institute of Social and Preventive Medicine
04 Faculty of Medicine > Department of Gynaecology, Paediatrics and Endocrinology (DFKE) > Clinic of Paediatric Medicine

Graduate School:

Graduate School for Health Sciences (GHS)

UniBE Contributor:

Essig, Stefan; Michel, Gisela; Dupont, Carole; Tinner Oehler, Eva Maria Eugenia and Kühni, Claudia

Subjects:

600 Technology > 610 Medicine & health
300 Social sciences, sociology & anthropology > 360 Social problems & social services

ISSN:

1545-5009

Publisher:

Wiley-Liss

Language:

English

Submitter:

Beatrice Minder Wyssmann

Date Deposited:

28 Feb 2019 16:32

Last Modified:

20 Apr 2019 01:32

Publisher DOI:

10.1002/pbc.27661

PubMed ID:

30729685

Uncontrolled Keywords:

aftercare cancer communication delivery of health care fear motivation oncology pediatricians prognosis survivors

BORIS DOI:

10.7892/boris.127049

URI:

https://boris.unibe.ch/id/eprint/127049

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