Parental distress and desire for information regarding long-term implications of pediatric cancer treatment.

Abstract:

BACKGROUND:Parents of children with cancer have unmet information needs regarding future limitations resulting from cancer or its treatment. Prior research has demonstrated that, in early care discussions, clinicians focus on the acute effects of therapy rather than long-term limitations, partly due to worries of causing distress. The validity of concerns regarding distress is unknown. In the current study, the authors evaluated parental distress associated with information regarding future limitations, and the extent to which distress is associated with information preferences. METHODS:The authors surveyed 355 parents of children with cancer within 3 months of diagnosis, and the children's physicians at Dana-Farber Cancer Institute/Boston Children's Cancer and Blood Disorders Center and the Children's Hospital of Philadelphia. The primary outcome was parental distress associated with information regarding long-term limitations. RESULTS:Approximately 46% of parents found information regarding future limitations to be extremely or very upsetting. In multivariate analysis, parents were more likely to consider information regarding future limitations distressing if they also found prognostic information upsetting (odds ratio [OR], 5.36; P<.001), struggled to accept their child's illness (OR, 2.57; P<.001), or had depression (OR, 1.79; P=.01). However, approximately 92% of parents considered information regarding potential future limitations to be extremely/very important. Those who found information regarding future limitations distressing were more likely to consider it important (96% vs 89%; P=.03) and to desire a precise understanding of their child's risks (92% vs 80%; P=.001). CONCLUSIONS:Although information regarding future limitations caused by cancer treatment is upsetting to many parents, the majority of them desire this information, and those who are distressed are more likely to value this information.

journal_name

Cancer

journal_title

Cancer

authors

Greenzang KA,Cronin AM,Kang TI,Mack JW

doi

10.1002/cncr.31772

subject

Has Abstract

pub_date

2018-12-01 00:00:00

pages

4529-4537

issue

23

eissn

0008-543X

issn

1097-0142

journal_volume

124

pub_type

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