Distress and psychosocial risk in families with newly diagnosed pediatric brain tumors

Abstract

<jats:sec><jats:title>OBJECTIVE</jats:title><jats:p>Hospitalization for a newly diagnosed pediatric brain tumor is an extremely stressful time for a family, but this period has not been the focus of rigorous study. The purpose of this study was to quantify distress and psychosocial risk in this population to improve psychosocial care delivery.</jats:p></jats:sec><jats:sec><jats:title>METHODS</jats:title><jats:p>The authors administered the National Comprehensive Cancer Network Distress Thermometer (DT) and the Psychosocial Assessment Tool 2.0 (PAT) to primary caregivers of all children admitted to Children’s of Alabama with a new brain tumor between April 2016 and August 2017. The DT is a single-item measure of distress (scale range 0–10). The PAT (range 0–7) stratifies families by risk level: a score less than 1.0 indicates universal risk level (risk typically experienced during hospitalization); a score of 1.0–2.0 indicates targeted risk (specific psychosocial difficulties that impact medical treatment); and a score higher than 2.0 indicates clinically significant risk. Demographic and clinical information was abstracted from each child’s medical record. A correlation matrix using nonparametric statistics was created between abstracted data and the DT and PAT scores.</jats:p></jats:sec><jats:sec><jats:title>RESULTS</jats:title><jats:p>Forty primary caregivers were enrolled (of 49 eligible), with the patient age ranging from newborn to 17 years (mean 7.7 years). Twenty-five (63%) of the children were male, and 24 (60%) were white, non-Hispanic. Mean and median DT scores were 7.2 (SD 2.6) and 7, respectively. However, 12 (30%) rated their distress 10/10, and 85% rated distress 5 or greater. PAT scores ranged from 0.0 to 2.36 with mean and median scores of 0.89 (SD 0.50) and 0.86, respectively. PAT results for 16 (40%) families were in the targeted or clinical range, indicating psychosocial factors that have the potential to interfere with medical treatment. No clinical or demographic variable correlated significantly with the DT or PAT score.</jats:p></jats:sec><jats:sec><jats:title>CONCLUSIONS</jats:title><jats:p>Families of children with newly diagnosed brain tumors experience high levels of distress and psychosocial risk. This work will serve as the foundation for efforts to standardize psychosocial evaluation for newly diagnosed pediatric neurosurgical patients, and to create protocols that organize existing hospital-based psychosocial support services. These efforts have the potential to improve patient and family satisfaction as well as treatment outcomes.</jats:p></jats:sec>

Screening for caregiver psychosocial risk in children with medical complexity: a cross-sectional study

“…In our model, we did not include the caregiver's level of education as this variable is inherently included within our PAT questionnaire. Our results are in accordance with another recent study by Rocque et al 42 that investigated children with brain tumours. As in our study, demographic factors were not found to be significantly predictive of PAT scores.…”

The Many Roles of the Rock: A Qualitative Inquiry into the Roles and Responsibilities of Fathers of Children with Brain Tumors

“…The psychosocial effects of a pediatric brain tumor diagnosis and treatment course impact the entire family unit, including the child’s parental figures [1,2,3]. Parental caregiver distress is notably higher in pediatric brain tumor diagnoses than for parents of children with other forms of cancer [4]. The multiple psychosocial impacts of childhood brain cancer are noted to have lasting and late effects, not only for survivors of childhood brain tumors, but also for their parents [1,5,6,7].…”

Psychological Needs and Resources of the Staff in a Pediatric Neurosurgery Ward: A Phenomenological-Hermeneutic Study

“…To our knowledge, this is the first study based on first-hand accounts of healthcare professionals taking care of children with brain tumors in a neurosurgery unit. Nonetheless, some of the themes emerging from our data can be fruitfully confronted with results coming from different pediatric oncology settings (Zander et al, 2010;Taylor and Aldridge, 2017;Rocque et al, 2018;Slater et al, 2018;Nicklin et al, 2021). Morris and Morris (2017) undertook a qualitative study with the aim of exploring the experiences of the medical staff in a very stressful pediatric setting, characterized by high staff burnout, anxiety, and high turnover rates, namely in a pediatric bone marrow transplant unit.…”