Katianne M. Howard Sharp

Background: Cancer‐predisposing germline variants are increasingly identified and disclosed during pediatric oncology clinical care. To understand whether and how parents communicate about identified cancer predisposition syndromes (CPS) with their adolescent and young adult (AYA) children, this study qualitatively characterized the content and approach (e.g., timing) of parent–AYA communication about AYAs’ CPS. Procedure: AYAs with a CPS identified during clinical cancer care and their parents independently completed semi‐structured interviews regarding their CPS‐related communication. Interviews were completed 1.0–3.99 years following genetic test result disclosure and coded using inductive content analysis. Results: Twenty‐one AYAs (age 13–20 years) and 24 parents (17 mothers, 6 fathers, 1 grandmother) completed interviews. Although most parents reported repeatedly communicating with their child, several AYAs did not recall these conversations and nearly half described a one‐time conversation. Parents described communicating to disclose genetic results, educate regarding cancer risk, attend to AYAs’ emotions, and provide anticipatory guidance for future risk management. Parents whose AYA had a CPS conferring risk for adult‐onset cancers (e.g., colon cancer) expected to continue to remind their AYA about cancer surveillance well into adulthood. Parents and AYAs described their CPS‐related communication as “light,” prompted by the AYAs’ medical appointments and questions, and impacted by parents’ understanding of the CPS. Conclusions: Our findings highlight areas for targeted genetic education and support. Parents may benefit from screening to ascertain their CPS understanding, education regarding AYAs’ CPS‐related information and emotional support needs, and support for transitioning AYAs to independently manage CPS‐related health needs. Trial Registration: ClinicalTrials.gov identifier: NCT04848142

We read with interest the arguments by Watts, et al. for upholding personal utility in the case of clinical genomic testing (Watts and Newson 2026). Based on our extensive experience with clinical ...

PURPOSE: To determine whether transitioning from a two-visit consent process led by an expert consenter to a decentralized model of consenting using an educational video and a clinical care provider translated into sustained decisional satisfaction and comparable levels of understanding about genomic sequencing for cancer predisposition. MATERIALS AND METHODS: A total of 150 parents of children with cancer agreed to participate in this study approximately 4 weeks (±2 weeks) after a consent conversation for genomic sequencing using a decentralized model to assess their genetic knowledge and decision satisfaction. Results were compared with a cohort of parents (n = 121) consented with an expert consenter using a two-visit process consisting of an informational session followed by knowledge reinforcement 5 weeks (±3 weeks) after diagnosis. RESULTS: Among parents in the decentralized consent process, 94% recalled providing consent. However, 53% could not recall who conducted the consent conversation. Less than half (44%) recalled reviewing a copy of the consent form, and only 17% viewed the educational video. Overall, parents endorsed consenting to sequencing as the right choice (mean 4.4/5-point Likert) without decisional regret (1.5 of 5). Parents who consented through the decentralized process did not significantly differ in genetic knowledge from the baseline preconsent genetic knowledge assessment for the comparison sample. Only 56% of parents who consented through the decentralized process answered at least 75% of the knowledge questions correctly ( P < .001), compared with 82% of parents who consented through the expert consenter model. CONCLUSION: While the decentralized consenting processes translated into lower knowledge scores, parents maintained high levels of decisional satisfaction. Further research is warranted to maximize knowledge exchange and ensure values-aligned consent in decentralized models.

Fear of cancer recurrence (FCR) is a significant but understudied concern among parents of childhood cancer survivors. This study quantitatively characterized parental FCR and explored potential demographic and clinical correlates among parents of children treated for cancer. Parents (N = 192) completed the Fear of Cancer Recurrence Inventory-Parent Short Form (FCRI-Parent) and provided demographic information. Clinical variables were obtained from medical chart review. Associations between FCR and demographic or clinical variables were analyzed using t-tests, ANOVAs, and Pearson’s correlations. Parents reported a mean FCR score of 18.64 (SD = 8.73), with 42.2% of parents endorsing FCR above a score of 22. Parental FCR significantly varied by parent race, education, and spirituality. Higher FCR was also significantly negatively correlated with child age, time since diagnosis, and time since treatment completion. Parents of children with central nervous system tumors or hematological malignancies endorsed significantly higher FCR compared to parents of children with solid tumors. Findings build on previously identified psychosocial needs for parents of children treated for cancer by quantitatively describing parental FCR and exploring subgroups that may be at increased risk for FCR. Tailored interventions, including strategies that support spiritual coping, may help mitigate FCR among at-risk parents.

Introduction: Characterizing stressful events reported by childhood cancer survivors experienced throughout the lifespan may help improve trauma‐informed care relevant to the survivor experience. Methods: Participants included 2552 survivors (54% female; 34 years of age) and 469 community controls (62% female; 33 years of age) from the St. Jude Lifetime (SJLIFE) cohort who completed the Posttraumatic Stress Disorder (PTSD) Checklist for the Diagnostic and Statistical Manual of Mental Disorders (PCL‐5) or the Posttraumatic Stress Disorder (PTSD) Checklist civilian version (PCL‐C) primer question in which participants identified their most stressful event. Demographic and clinical data were also obtained. Qualitative responses were analyzed using content analysis. Quantitative analyses included descriptive statistics for the sample, and frequencies of category reporting derived from qualitative analyses among survivors and controls. Results: Eleven categories of stressful events were observed: accidents and natural disasters, financial and home, acts of violence, social and relational, political and legal, occupational and educational, suicide, cancer and its treatment, illnesses and injuries, loved one's illnesses and injuries, and loved one's deaths. The most commonly reported category was loved ones’ deaths (39.7% and 36.7% in survivors and controls, respectively). Survivors more often reported illnesses and injuries (13.0% vs. 8.1%, p = 0.003) than community controls. Only 8.5% of survivors reported cancer and its treatment as their most stressful life event; survivors of bone tumors reported this more often compared to other diagnosis groups (17.3%, p < 0.0001). Conclusion: Adult survivors of childhood cancer identify events both related and unrelated to cancer or its treatment as their most stressful life events. Understanding individual survivors’ experiences may serve to better specify trauma‐informed care models.

Objective: This study describes adolescent and young adult (AYA) cancer survivors’ self-image, including the role of social media, in the context of social interaction. More specifically, this study describes how survivors view their physical appearance, personality, and capabilities throughout their cancer experience. Methods: Data were derived from semi-structured interviews of 21 AYA oncology survivors, ages 16–22 years, who were treated for cancer 1–4 years prior to participation. A five-phase approach for data analysis that incorporated both deductive and inductive qualitative strategies was used to identify themes of self-image. Results: The analysis revealed two themes for each of the self-image components (personality, appearance, and capabilities). Specifically, AYA reflect on how a cancer diagnosis affects their identity, self-esteem, physical features, and social normalcy. In terms of the role of social media, AYA cancer survivors identified that social media promotes an unrealistic expectation and is used for external validation. Conclusions: Survivors report ways in which their cancer experience and social perceptions contribute to their sense of self. The multifaceted aspects of self-image described are key concepts that psychosocial providers should assess throughout the AYA cancer trajectory. From AYAs’ perspective, social media contributes to their self-image by creating a pressure to conform to societal expectations on appearance; additional research and support to mitigate this impact are warranted. Increasing AYAs’ media literacy and enhancing psychosocial assessments and support to navigate online and offline social worlds may help shape AYA’s self-image.

The psychosocial aspects of pediatric hereditary cancer range beyond initial coping with the genetic diagnosis and are situated across the lifespan and continuum of care. Over the past 20 years, a growing body of evidence has demonstrated the need for tailored support to identify and manage psychosocial concerns of pediatric patients with, or at risk of, a cancer predisposition syndrome (CPS). As the unmet needs of young people with a CPS continue to grow, the importance of psychology in the genomic era has expanded. This paper discusses how psychologists can be integrated with inter‐ or multi‐disciplinary teams to address complex psychosocial needs.

The psychosocial aspects of pediatric hereditary cancer range beyond initial coping with the genetic diagnosis and are situated across the lifespan and continuum of care. Over the past 20 years, a growing body of evidence has demonstrated the need for tailored support to identify and manage psychosocial concerns of pediatric patients with, or at risk of, a cancer predisposition syndrome (CPS). As the unmet needs of young people with CPS continue to grow, the importance of psychology in the genomic era has expanded. This paper discusses how psychologists can be integrated with inter-or multi-disciplinary teams to address complex psychosocial needs.

Objective: Children with cancer increasingly undergo germline genetic testing to identify genetic predispositions and inform clinical care options. Parents of children with pathogenic/likely pathogenic (P/LP) germline results have reported more distress than parents of children with negative results. Little is known about modifiable risk and resilience factors for intervention, such as cognitive perceptions. This study examined the moderating effects of parents’ cognitive perceptions on adjustment to their child’s germline genetic test results. Methods: Parents (N = 191) completed surveys reporting cognitive perceptions (i.e., intolerance of uncertainty, symptom attributions, and perceptions of child physical vulnerability) and psychological adjustment 1–3.99 years post-disclosure of their child’s genetic test results. Moderation analyses examined whether parents’ cognitive perceptions moderated the relation between children's cancer predisposition genetic testing results (P/LP, uncertain [VUS], or negative) and parental psychological adjustment. Results: Moderation analyses revealed significant interactions between genetic test results and both intolerance of uncertainty and psychological attributions for children’s symptoms. Specifically, parents of children with P/LP results endorsed significantly more distress and uncertainty compared to each VUS and negative results, only in cases of moderate to high intolerance of uncertainty and psychological attributions (distress outcomes). In contrast, somatic attributions for symptoms and perceived child vulnerability were directly associated with higher distress regardless of results. Conclusions: Cognitions such as intolerance of uncertainty and psychological symptom attribution may contribute to distress among parents of children with P/LP results. Therefore, cognitive interventions (e.g., Cognitive Behavioral Therapy, Acceptance and Commitment Therapy) may help parents manage distress regarding their child’s genetic cancer risk.

Germline genomic sequencing is increasingly integrated into pediatric cancer care, with pathogenic cancer-predisposing variants identified among 5–18% of affected children and variants of uncertain significance (VUS) in up to 70%. Given the potential medical implications for children and their families, parents’ psychosocial responses to learning results are important to understand. Parents of children with cancer who learned their children’s germline pathogenic or VUS results following paired tumor and germline genomic sequencing described their cognitive and affective responses to results in an open-ended write-in question after disclosure (M = 10 months post-disclosure; range = 1–28). Responses were coded and categorized using content analysis, then compared across results using chi-square and Fisher’s exact test. Parents of children with pathogenic (n = 9), VUS (n = 52), and pathogenic plus VUS results (n = 9) described negative emotions, positive reactions, mixed emotions (i.e., positive and negative emotions), and neutral reactions. Negative emotions were described significantly more frequently with pathogenic results than VUS only (χ² = 5.19; p = .02), with peace of mind and empowerment only described for those with VUS. Parents also described approach(es) to coping (e.g., faith, plan of action) and reactions specific to the uncertainty of VUS (e.g., disappointment at no explanation for cancer etiology). A subset with VUS described decreasing worry/distress with increased understanding of results, whereas others displayed misconceptions regarding VUS. Screening for emotional adjustment is warranted for parents of children with cancer receiving pathogenic germline results, and screening for understanding is warranted with VUS. Findings highlight the importance of pre-and posttest genetic counseling.