Communicating neurocognitive impacts of childhood cancer: Engaging stakeholders to identify research priorities.

OBJECTIVE: Supporting childhood cancer survivors with neurocognitive late effects is critical and requires additional attention in the research arena. This convening project's aim was to engage parents, healthcare providers, and education stakeholders in order to identify research priorities regarding patient/family-provider communication about neurocognitive impacts associated with childhood cancer. METHODS: Specific components of the Stakeholder Engagement in quEstion Development (SEED) method were combined with an online e-Delphi consensus building approach. Multiple modalities were utilized for engagement including in-person/hybrid meetings, email/Zoom/call communications, targeted-asynchronous learning activities by stakeholders, iterative surveys, and hands-on conceptual modeling. RESULTS: Twenty-four (parents n = 10, educators n = 5, healthcare providers n = 9) participated in the year-long project, generating 8 research questions in the stakeholder priority domains of training families/caregiver, access of neuropsychological assessment, tools to facilitate communication and training medical providers. CONCLUSIONS: This paper illustrates a successful stakeholder convening process using multi-modal engagement to establish research priorities. The resulting questions can be utilized to guide research projects that will fill gaps to providing optimal care to children with neurocognitive late effects. PRACTICE IMPLICATIONS: This process can be used as a template for tackling other healthcare issues that span across disciplines and domains, where stakeholders have rare opportunities to collaborate.

Burnout in psychosocial oncology clinicians: A systematic review.

OBJECTIVE: Few studies have examined burnout in psychosocial oncology clinicians. The aim of this systematic review was to summarize what is known about the prevalence and severity of burnout in psychosocial clinicians who work in oncology settings and the factors that are believed to contribute or protect against it. METHOD: Articles on burnout (including compassion fatigue and secondary trauma) in psychosocial oncology clinicians were identified by searching PubMed/MEDLINE, EMBASE, PsycINFO, the Cumulative Index to Nursing and Allied Health Literature, and the Web of Science Core Collection. RESULTS: Thirty-eight articles were reviewed at the full-text level, and of those, nine met study inclusion criteria. All were published between 2004 and 2018 and included data from 678 psychosocial clinicians. Quality assessment revealed relatively low risk of bias and high methodological quality. Study composition and sample size varied greatly, and the majority of clinicians were aged between 40 and 59 years. Across studies, 10 different measures were used to assess burnout, secondary traumatic stress, and compassion fatigue, in addition to factors that might impact burnout, including work engagement, meaning, and moral distress. When compared with other medical professionals, psychosocial oncology clinicians endorsed lower levels of burnout. SIGNIFICANCE OF RESULTS: This systematic review suggests that psychosocial clinicians are not at increased risk of burnout compared with other health care professionals working in oncology or in mental health. Although the data are quite limited, several factors appear to be associated with less burnout in psychosocial clinicians, including exposure to patient recovery, discussing traumas, less moral distress, and finding meaning in their work. More research using standardized measures of burnout with larger samples of clinicians is needed to examine both prevalence rates and how the experience of burnout changes over time. By virtue of their training, psychosocial clinicians are well placed to support each other and their nursing and medical colleagues.

The Effectiveness of a Hospital-Based School Liaison Program: A Comparative Study of Parental Perception of School Supports for Children With Pediatric Cancer and Neurofibromatosis Type 1.

Childhood survivors of central nervous system (CNS) cancers (defined as cancers whose diagnosis or treatment affect the CNS) are at increased risk for educational related difficulties, as are children affected by neurofibromatosis type 1. This study evaluated the effectiveness of and satisfaction with a model of psychoeducation, consultation, and advocacy provided by a School Liaison Program (SLP) for families and schools of children with CNS-involved cancers compared with a control group of parents of children with a diagnosis of neurofibromatosis type 1 who did not receive school-based services. Results indicated significant between-group differences in parents' belief that their child is meeting academic potential, with parents who received SLP services reporting greater satisfaction with their child's progress, better understanding of their child's learning needs, and an increased ability to access school supports. The strong, positive impact associated with the consultation, psychoeducation, and parental advocacy training provided by the SLP suggests that a similar model of care would potentially benefit other groups of children whose neurocognitive functioning is compromised by chronic medical conditions.

Supporting pediatric cancer survivors with neurocognitive late effects: a model of care.

Educational difficulties are common for childhood survivors of central nervous system (CNS) cancers. Children who have been treated for brain tumors and those who have received treatments involving the CNS are at increased risk of developing neurocognitive late effects including difficulties with attention, executive functioning, speed of processing, and academic functioning. These children are also at risk for difficulties with social functioning and social isolation. This hospital's School Liaison Program (SLP) provides ongoing psychoeducation, advocacy, and consultation services for parents, schools, and medical staff to address the educational needs associated with the late effects of treatment for pediatric CNS-involved patients. This article provides an overview of the SLP model of care and discusses parent-perceived quality and program effectiveness. In general, parents attributed SLP involvement to improved academic performance, home-school communication, and school-level understanding of unique student cognitive profiles and learning needs.

Cerebellar mutism after posterior fossa tumor resection: case discussion and recommendations for psychoeducational intervention.

Cerebellar mutism (also known as posterior fossa syndrome) is a relatively common complication of posterior fossa surgery for primary brain tumors in children. Many children with cerebellar mutism experience long-term adverse neurological, cognitive, and psychological sequelae and require extensive interdisciplinary support. This study illustrates a typical case of cerebellar mutism in a child after resection of medulloblastoma, followed by a review of associated symptoms, clinical course, and modulating factors. Additionally, recommendations for providing educational support to children with cerebellar mutism are explored.