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The evolution of regret: decision-making for parents of children with cancer

  • Bryan A. SiskEmail author
  • Tammy I. Kang
  • Jennifer W. Mack
Original Article

Abstract

Purpose

Parents of children with cancer make treatment decisions in highly emotional states while feeling overwhelmed with information. In previous work, 1 in 6 parents demonstrated heightened decisional regret regarding treatment at diagnosis. However, it is unclear how regret evolves over time. We aimed to determine whether parents of children with cancer experience decisional regret over time and to identify parental characteristics and clinician behaviors associated with longitudinal regret.

Methods

Prospective, questionnaire-based cohort study of parents of children with cancer at two academic pediatric hospitals. Parents reported decisional regret at diagnosis, 4 months, and 12 months.

Results

At baseline, 13% of parents (21/158) reported heightened regret, 11% (17/158) at 4 months (p = 0.43, McNemar’s test relative to baseline), and 11% (16/158) at 12 months (p = 0.35 relative to baseline and p = 0.84 relative to 4 months). In multivariable analysis using generalized estimating equations adjusted for the time point of survey completion, heightened regret was associated with non-white race/ethnicity (OR 11.57, 95% CI 3.53 to 41.05, p < .0001) and high anxiety (OR 2.01, 95% CI 1.04 to 3.90, p = .04). Parents with high peace of mind (OR 0.24, 95% CI 0.09 to 0.62, p = .003) and those reporting high-quality information (OR 0.22, 95% CI 0.07 to 0.69, p = 0.01) had lower odds of heightened regret. We found no association between heightened regret and the time point of survey administration.

Conclusions

A small, significant proportion of parents experience heightened regret throughout the first year of their child’s cancer treatment; non-white parents are at higher risk. Effective communication may protect against regret.

Keywords

Pediatric oncology Communication Decision-making Regret Psychosocial oncology Parent 

Notes

Funding

JWM received American Cancer Society Mentored Research Scholar Grant MRSG-08-010-01-CPPB and 2007 American Society of Clinical Oncology Career Development Award. BAS received National Center for Advancing Translational Sciences of the National Institutes of Health UL1 TR002345.

Compliance with ethical standards

Conflict of interest

The authors declare that they have no conflict of interest.

Contributors’ statements

Dr. Sisk: conceptualization, formal analysis, writing (original draft and review), and editing. Dr. Kang: conceptualization, writing (review), and editing. Dr. Mack: conceptualization, formal analysis, writing (review), and editing.

Supplementary material

520_2019_4933_MOESM1_ESM.tif (759 kb)
Flow Chart for Survey Administration (TIF 759 kb)

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Copyright information

© Springer-Verlag GmbH Germany, part of Springer Nature 2019

Authors and Affiliations

  1. 1.Division of Hematology and Oncology, Department of PediatricsWashington University School of MedicineSt. LouisUSA
  2. 2.Section of Pediatric Palliative CareTexas Children’s HospitalHoustonUSA
  3. 3.Department of PediatricsBaylor College of MedicineHoustonUSA
  4. 4.Pediatric Oncology and Division of Population SciencesDana-Farber Cancer InstituteBostonUSA
  5. 5.Division of Pediatric Hematology/OncologyBoston Children’s HospitalBostonUSA

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