Leanne Embry

Psychosocial service use and unmet need among recently diagnosed adolescent and young adult cancer patients

Adolescents and young adults (AYAs) with cancer demonstrate biomedical risks and psychosocial issues distinct from those of children or older adults. In this study, the authors examined and compared the extent to which AYAs treated in pediatric or adult oncology settings reported use of, and unmet need for, psychosocial support services.

Psychological distress and unsatisfied need for psychosocial support in adolescent and young adult cancer patients during the first year following diagnosis.

Identifying at‐risk adolescent and young adult (AYA) cancer patients and referring them to age‐appropriate psychosocial support services may be instrumental in reducing psychological distress and promoting psychosocial adaptation. The purpose of this study is to identify trajectories of clinically significant levels of distress throughout the first year following diagnosis and to distinguish factors, including supportive care service use, that predict the extent to which AYAs report distress.

Prevalence and predictors of post‐traumatic stress symptoms in adolescent and young adult cancer survivors: a 1‐year follow‐up study

Post‐traumatic stress symptoms (PTSS) have been identified as a meaningful indicator of distress in cancer survivors. Distinct from young adult survivors of childhood cancer, young people diagnosed with cancer as adolescents and young adults (AYAs) face unique psychosocial issues; however, there is little published research of PTSS in the AYA population. This study examines prevalence and predictors of PTSS among AYAs with cancer.

Neurocognitive dysfunction in survivors of childhood brain tumors.

Newer treatments have resulted in increasing numbers of survivors of childhood cancer, for whom neurological and neurocognitive toxicity directly impacts overall functioning and quality of life. There are multiple disease- and host-related factors that influence the development of cancer-related neurocognitive dysfunction, which can progress over time and lead to significant functional impairments. This article provides an overview of the types of neurocognitive deficits seen in survivors of childhood brain tumors, the tools used to assess neurocognitive function, and the factors that impact its severity. This provides a framework for consideration of potential areas for primary prevention by reducing treatment-related toxicity as well as interventions, using behavioral and pharmacologic treatments.

Children's Oncology Group's 2013 blueprint for research: Behavioral science

Behavioral science has long played a central role in pediatric oncology clinical service and research. Early work focused on symptom relief related to side effects of chemotherapy and pain management related to invasive medical procedures. As survival rates improved, the focused has shifted to examination of the psychosocial impact, during and after treatment, of pediatric cancer and its treatment on children and their families. The success of the clinical trials networks related to survivorship highlights an even more critical role in numerous domains of psychosocial research and care. Within the cooperative group setting, the field of behavioral science includes psychologists, social workers, physicians, nurses, and parent advisors. The research agenda of this group of experts needs to focus on utilization of psychometrically robust measures to evaluate the impact of treatment on children with cancer and their families during and after treatment ends. Over the next 5 years, the field of behavioral science will need to develop and implement initiatives to expand use of standardized neurocognitive and behavior batteries; increase assessment of neurocognition using technology; early identification of at‐risk children/families; establish standards for evidence‐based psychosocial care; and leverage linkages with the broader behavioral health pediatric oncology community to translate empirically supported research clinical trials care to practice. Pediatr Blood Cancer 2013; 60: 1048–1054.

Implementation of multi-site neurocognitive assessments within a pediatric cooperative group: Can it be done?†

Neurocognitive functioning is an important construct in childhood cancer survivorship, given the potential neurotoxicity of central nervous system (CNS) diseases and treatments and the relevance for important functional outcomes in adulthood. However, within pediatric oncology cooperative groups there have been significant barriers to neurocognitive data collection that have historically resulted in incomplete data (<30% compliance), thereby limiting progress in understanding the neurocognitive functioning of survivors. This paper describes the development, feasibility, and potential efficacy of a brief neurocognitive battery to maximize collection of psychometrically robust neurocognitive data within a pediatric cooperative group. We hypothesized that a novel set of procedures could result in collection of data from over 80% of eligible children.

The relationship between posttraumatic stress and posttraumatic growth among adolescent and young adult (AYA) cancer patients

Theories of posttraumatic growth suggest that some degree of distress is necessary to stimulate growth; yet, investigations of the relationship between stress and growth following trauma are mixed. This study aims to understand the relationship between posttraumatic stress symptoms and posttraumatic growth in adolescent and young adult (AYA) cancer patients.

Health-Related Quality of Life in Adolescent and Young Adult Patients With Cancer: A Longitudinal Study

Purpose To examine changes in health-related quality of life (HRQoL) and its predictors during the first 2 years after initial cancer diagnosis in adolescent and young adult (AYA) patients with cancer. Patients and Methods A multicenter, longitudinal, prospective study was conducted among a diverse sample of AYA patients with cancer ages 15 to 39 years. One hundred seventy-six patients (75% response) completed a self-report measure of HRQoL (Short Form-36 [SF-36]) within the first 4 months after diagnosis and again 12 and 24 months later. Linear mixed models with random intercepts and slopes estimated changes in QoL. Results Recently diagnosed AYA patients with cancer had significantly worse physical component scale (PCS) scores (38.7 v 52.8; P < .001) and mental component scale (MCS) scores (42.9 v 48.9; P < .001) when compared with population norms. Significant improvements in PCS and MCS scores from baseline to 24-month follow-up were observed; however, these increases were largest during the first 12 months. At the 24-month follow-up, AYA patients still had significantly lower PCS scores (48.0 v 52.8; P < .001) and MCS scores (45.8 v 48.9; P = .002) when compared with population norms. Multivariable analyses revealed that improvements in PCS and MCS scores were primarily a function of being off-treatment and being involved in school or work. PCS but not MCS scores were worse for AYA patients diagnosed with cancers with poorer prognoses. Conclusion Although HRQoL improved over time, it was still compromised 24 months after primary diagnosis. Given relatively little observed improvement in HRQoL during the 12- to 24-month period after diagnosis, AYA patients may benefit from supportive care interventions administered during the second year after diagnosis.

Standard of Care for Neuropsychological Monitoring in Pediatric Neuro-Oncology: Lessons From the Children's Oncology Group (COG).

As the mortality of pediatric cancers has decreased, focus on neuropsychological morbidities of treatment sequelae have increased. Neuropsychological evaluations are essential diagnostic tools that assess cognitive functioning and neurobiological integrity. These tests provide vital information to support ongoing medical care, documenting cognitive morbidity and response to interventions. We frame standards for neuropsychological monitoring of pediatric patients with CNS malignancy or who received cancer‐directed therapies involving the CNS and discuss billing for these services in the United States in the context of clinical research. We describe a cost‐effective, efficient model of neuropsychological monitoring that may increases access to neuropsychological care. Pediatr Blood Cancer

Standard of Care for Neuropsychological Monitoring in Pediatric Neuro-Oncology

As the mortality of pediatric cancers has decreased, focus on neuropsychological morbidities of treatment sequelae have increased. Neuropsychological evaluations are essential diagnostic tools that assess cognitive functioning and neurobiological integrity. These tests provide vital information to support ongoing medical care, documenting cognitive morbidity and response to interventions. We frame standards for neuropsychological monitoring of pediatric patients with CNS malignancy or who received cancer‐directed therapies involving the CNS and discuss billing for these services in the United States in the context of clinical research. We describe a cost‐effective, efficient model of neuropsychological monitoring that may increases access to neuropsychological care. Pediatr Blood Cancer