ArticleAnnals of pediatrics & child health2015
Communicating Prognosis in Sickle Cell Disease: A Qualitative Study of Adolescents with Sickle Cell Disease, Their Parents and Providers.
Article in Annals of pediatrics & child health, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
4 citing papers in PubMed.
- Coping Skills, Hospitalizations, and Hopefulness in Youths with Sickle Cell Disease Treated in a Regional Outpatient Comprehensive Pediatric Center.Children (Basel, Switzerland) · 2026Article
- Prognostic imagination: Genetic counseling amidst therapeutic innovation and evolving futures.Journal of genetic counseling · 2023Article
- Managing Prognosis in Precision Medicine: Utility, Imagination, and Communication.Children (Basel, Switzerland) · 2023Article
- The perception of pediatric sickle cell anemia patient's caregivers toward hematopoietic stem cell transplantation (single-center experience, Saudi Arabia).Frontiers in pediatrics · 2023Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors.
Funding
Abstract
Adolescents with sickle cell disease (SCD) and their parents are more optimistic about their future than their physicians. This may affect treatment preferences and therapy adherence. Disease specific recommendations for discussing disease course of children with SCD do not exist. To begin to address this gap, we held focus groups for adolescents with SCD 14-21 years old (n=6), parents of adolescents with SCD (n=4) and with pediatric (n=3) and adult (n=2) hematologists. SCD prognosis is complicated due to the uncertain disease course. Fear and worry are associated with discussing the future. Parents disagree with adolescents and hematologists about the best approach to discussing prognosis and oppose prognosticating that includes life expectancy. Guidelines to improve communication between physicians and families are needed.
Indexed as
Identifiers
39712473PMC11661846What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.