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Prognostic disclosures over time: Parental preferences and physician practices
Bryan A Sisk1, Tammy I Kang2,3, Jennifer W Mack4,5
1Department of Pediatrics, St. Louis Children's Hospital, St. Louis, Missouri.
Cancer
|April 4, 2017
Summary
Parents of children with cancer consistently desire detailed prognostic information throughout the first year. Open communication about prognosis over time is beneficial and preferred by most parents.
Area of Science:
- Pediatric Oncology
- Clinical Communication
- Patient-Centered Care
Background:
- Parents of children with cancer often desire prognostic information.
- Little is known about how this desire and experience evolves over time.
Purpose of the Study:
- To investigate changes in parents' desire for and experiences with prognosis communication over the first year after a child's cancer diagnosis.
Main Methods:
- Longitudinal, prospective questionnaire-based cohort study.
- 156 parents of children with cancer at two academic pediatric hospitals.
- Utilized previously published scales administered at diagnosis, 4 months, and 12 months.
Main Results:
- Majority of parents preferred detailed prognosis information throughout the first year (84-87%).
- Few parents desired less information (<5%), while a significant portion wanted more (24-28%).
- High rates of prognostic discussions occurred (74-93%); satisfaction linked to detailed initial disclosure and timely follow-up discussions.
Conclusions:
- Parents desire ongoing, detailed prognostic conversations.
- Revisiting these discussions over time is beneficial.
- Future research should explore optimal content for longitudinal discussions and pediatric patient communication preferences.