Patient reported outcome (PRO) measures are needed to fully understand the subjective experiences of children during cancer treatment. Literacy skills are necessary for children to independently complete PRO instruments. The association of age, race, and literacy in school-aged children undergoing cancer therapy is not well-documented, and it is unknown how these factors impact the child’s ability to understand and complete PROs. Age is currently used to decide when patient-reported outcome measures can be collected.
The purpose of this research study was to examine the relationship between literacy and a child’s age, race, and ability to understand and complete a new instrument—the Pediatric PRO-Common Terminology Criteria for Adverse Events (CTCAE). Children aged 7-20 years, from 8 sites, participated in cognitive interviews as part of the validation process for the Pediatric PRO-CTCAE. The Word Reading component of the Wide Range Achievement Test (WRAT) was used to evaluate literacy. Logistic regression and multivariable linear regression were used to examine relationships between variables. Wide variations in literacy skills were noted across all ages in the 140 participants. Most 7 year olds (63%) required help with reading, although words were often recognized when stated out loud. A one-unit increase in WRAT score, which equates to an increasing higher literacy level, was associated with a decline in words/questions identified by the children as “hard to understand” (p=0.017). Age and literacy were highly correlated (B -0.804, p=0.045). Although literacy scores increased with age, older children (16-20 years) were more likely to fall behind the expected literacy level. Children, even those with lower literacy scores, were able to complete the PRO-CTCAE, indicating that a variety of factors may influence comprehension (i.e., child’s developmental stage, prior health experiences, vocabulary). There was no significant association between race and literacy in this study. The findings from this study demonstrate that age is not always an accurate proxy for literacy level, and therefore it is recommended that special consideration be given to literacy in conjunction with PRO use in children with cancer.
Exercise has an important role in health promotion and is recommended for individuals with sickle cell disease (SCD) to enhance physical and mental health. However, exercise is challenging for them because exercise capacity is limited due to the pathophysiology of the disease, health risks such as vaso-occlusion are associated with excessive exercising, and exercise guidelines are vague and do not focus on improving exercise capacity or fitness. Mild to moderate exercise is advised, but self-regulation of these intensities is difficult. To regulate intensity, one SCD recommendation is to stop exercising at the first sense of fatigue.
Children undergoing treatment for leukemia report co-occurring symptoms of fatigue, sleep disturbances, pain, nausea, and depression as a symptom cluster. Physical activity (PA) is essential for development and may influence symptom severity. Children with leukemia are at risk for cognitive impairments from CNS directed therapies. Longitudinal parallel-process (LPP) modeling is a type of analysis that examines relationships between two or more longitudinal processes. Using an LPP model, we were able to explore relationships among the functions of PA and cognition with symptom clusters over the trajectory of leukemia treatment.
Partnerships between academia and practice can lead to improved patient care outcomes. Nurse educators in both academia and practice are positioned to facilitate opportunities for students and practicing nurses to be involved in evidence-based practice (EBP) care initiatives. Best practices in collaborative partnerships have demonstrated the significance of their far-reaching impact on students, nurses, patients, and health systems. However, many students and nurses still lack the confidence in initiating and carrying out EBP projects.
The inpatient hematology/oncology and stem cell transplant units at an urban children’s hospital had experienced multiple years above the Solutions for Patient Safety (SPS) baseline central line-associated bloodstream infection (CLABSI) rates, including and excluding mucosal barrier injury (MBI) events. Two clinical nurse specialists (CNSs)—one focused on hospital-acquired infections, another focused on the inpatient cancer center—decided to approach their local policies and outcomes data critically.
Fortunately, there have been great strides in the progress of treating children diagnosed with cancer during the last 50 years, with ever-increasing survivor outcomes. This is what every practitioner working in the pediatric oncology field strives and hopes for. And yet, despite the remarkable and increasingly sophisticated treatment options, not all children will survive their diagnosis with cancer. In general, nurses have more training, education, and skills with delivering chemotherapy, biotherapy, and other interventions than in providing end-of-life care.
Most newly diagnosed pediatric oncology patients begin their disease trajectory in the inpatient setting, but this initial hospitalization has become shorter as more care is provided in the outpatient setting. This creates a short timeframe for families to process the diagnosis, adapt to new roles, and acquire essential knowledge and care-management skills. Parents who feel inadequately prepared often struggle to care for their child at home; this might result in increased stress, poorer patient outcomes, and increased emergency department visits and readmissions.