Background
Patients with cancer are increasingly offered genomic sequencing, including germline testing for cancer predisposition or other disorders. Such testing is unfamiliar to patients and families, and clear communication is needed to introduce genomic concepts and convey risk and benefit information.
Methods
Parents of children with cancer were offered the opportunity to have their children’s tumor and germline examined with clinical genomic sequencing. Families were introduced to the study with a 2‐visit informed consent model. Baseline genetic knowledge and self‐reported literacy/numeracy were collected before a study introduction visit, during which basic concepts related to genomic sequencing were discussed. Information was reinforced during a second visit, during which informed consent was obtained and a posttest was administered.
Results
As reflected by the percentage of correct answers on the pretest and posttest assessments, this model increased genetic knowledge by 11.1% (from 77.8% to 88.9%; P < .0001) in 121 parents participating in both the study introduction and consent visits. The percentage of parents correctly identifying the meaning of somatic and germline mutations increased significantly (from 18% to 59% [somatic] and from 31% to 64% [germline]; P < .0001). Nevertheless, these concepts remained unfamiliar to one‐third of the parents. No relation was identified between the change in the overall percentage of correct answers and self‐reported literacy, numeracy, or demographics.
Conclusions
The use of a 2‐visit communication model improved knowledge of concepts relevant to genomic sequencing, particularly differences between somatic and germline testing; however, these areas remained confusing to many participants, and reinforcement may be necessary to achieve complete understanding.
Objective
This study examined the relationships between parental posttraumatic stress symptoms (PTSS), child PTSS, and parent-child concordance for child PTSS.
Method
Participants were children with cancer (n = 199) and healthy children (n = 108) and their parents. Children self-reported on PTSS and parents completed measures of child and parent PTSS.
Results
In the cancer group, child and parent report of child PTSS were significantly correlated with no mean differences between reporters. In contrast, correlations were non-significant in the control group, and parents reported significantly lower levels of child PTSS than children. Increased parental PTSS was associated with better concordance in the cancer group, but not in the control group. In fact, in the cancer group, parent-child concordance was strongest at the highest level of parental PTSS.
Conclusions
Parents of children with cancer were found to be accurate reporters of their children’s distress, even with high levels of reported personal distress. In contrast, parents of healthy children appear primarily influenced by personal distress when reporting child PTSS. Although multiple informant assessments are always desirable, it appears that utilization of a single informant may be reasonable in the cancer setting when access to informants is limited.
Early childhood is a time of remarkable growth that sets the foundation for subsequent development. Cognitive, speech and language, emotional, behavioral, and problem-solving skills begin to emerge during these years and mature on a developmental time line (Brown & Jernigan, 2012). These abilities are vital to positive long-term outcomes including academic success
Young children with cancer may be at significant risk of deficits in intellectual, adaptive, and preacademic functioning. Although our sample is biased by those who were referred for clinical evaluations, the severity of deficits highlights the potential vulnerability of young patients, even before most have entered formal school. Interventions-such as hospital-based preschool programs to increase preacademic skills-should be designed that explicitly target preschool-aged children and focus on a wide range of domains.
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