Lauren C. Daniel

Fatigue in Adolescents With Cancer Compared to Healthy Adolescents

Cancer‐related fatigue is one of the most pervasive and debilitating side‐effects of cancer treatment and adolescents consistently rate cancer‐related fatigue as one of the most distressing aspects of treatment. Because fatigue is also high in adolescents without cancer, the current study aims to describe fatigue in adolescents with cancer relative to a control group and to identify associates of such fatigue. Knowing this is important for understanding the extent of the problem in adolescents with cancer relative to healthy adolescents and for understanding who is most at risk for fatigue and related distress.

Insurance Status as a Sociodemographic Risk Factor for Functional Outcomes and Health-related Quality of Life Among Youth With Sickle Cell Disease

Youth with sickle cell disease (SCD) are at risk for functional limitations and poor health-related quality of life (QoL). This study examined sociodemographic factors that may interact with medical complications to reduce functional ability and QoL among youth with SCD. Fifty-three patient/caregiver pairs (children 8 to 18 years; M=12.3 y) with SCD completed the Functional Disability Inventory and Pediatric Quality of Life Inventory questionnaires. Medical database reviews were conducted to collect health care utilization, disease complications, and sociodemographic information; insurance type (public vs. private insurance) and family zip code to access Census tract data reflecting neighborhood distress. Insurance type, but not neighborhood sociodemographic risk indicators, was significantly associated with disease-related complications and QoL. There were significant differences in both health care utilization and QoL by insurance type. Complications were higher in the group with public insurance. Insurance type seems to be more strongly related to disease outcomes and QoL than neighborhood sociodemographic distress. Closer attention to the contribution of insurance type to health outcomes may provide important insight to potential barriers for disease management. These issues are critically important for health care efficiency and equity for poor and underserved children with chronic health conditions.

Initial Validation of the Sleep Disturbances in Pediatric Cancer Model

OBJECTIVE : The current study evaluates content validity of the Sleep Disturbance in Pediatric Cancer (SDPC) model using qualitative and quantitative stakeholder input.  METHODS : Parents of children (aged: 3-12 years) with acute lymphoblastic leukemia (n = 20) and medical providers (n = 6) participated in semi-structured interviews about child sleep during cancer treatment. They also rated SDPC model component importance on a 0-4 scale and selected the most relevant sleep-related intervention targets.  RESULTS : Qualitatively, parents and providers endorsed that changes in the childs psychosocial, environmental, and biological processes affect sleep. Stakeholders rated most model components (parent: 32 of 40; provider: 39 of 41) as important (>2) to child sleep. Parents were most interested in interventions targeting difficulty falling asleep and providers selected irregular sleep habits/scheduling, though groups did not differ significantly. CONCLUSIONS : Stakeholders supported SDPC content validity. The model will inform subsequent measure and intervention development focusing on biological and behavioral factors most salient to sleep disturbances in pediatric cancer.

Functional Somatic Symptoms in Pediatric Hematology and Oncology

Functional somatic symptoms (FSS) in pediatric hematology and oncology significantly limit health-related quality of life and functional abilities, thus requiring regular assessment and treatment. This chapter focuses on FSS in pediatric sickle cell disease and pediatric cancer, diseases for which there is an established literature describing and explaining functional abilities, health-related quality of life, and other adaptive outcomes. Pain and fatigue in pediatric sickle cell disease and pain, nausea, vomiting, and fatigue in pediatric cancer are among the most common and distressing disease and treatment complications. Although physical in etiology, psychosocial risks and resources across multiple levels of pediatric patients’ social ecology influence the frequency, intensity, and course of these FSS. The literature regarding common approaches to assessment of pain, anticipatory nausea and vomiting, and fatigue as well as associated risk factors is summarized. Use of self- and parent proxy report measures of FSS, internalizing and externalizing symptoms, and psychosocial risk screening are recommended. Case studies demonstrate differential diagnosis and application of medical- and evidence-based psychological interventions for FSS. Importantly, multidisciplinary care models for pediatric sickle cell disease and pediatric cancer are consistent with the recommended approach to FSS.

A Review of Sleep Concerns in Paediatric Sickle Cell Disease

Children with sickle cell disease (SCD) are at an increased risk for sleep disorders as compared to healthy children, possibly because of disease processes, pain, minority status and living in an urban environment. Adequate sleep is an essential component of typical development, moodand-affect regulation and health maintenance, but more research is needed to understand the contribution of sleep to health outcomes in children with SCD. AS SCD is a chronic disease that can be affected by environmental, health, and behavioural factors, understanding the impact of the disease on sleep is important to maximise the quality of life in these children. If the disease causes poor sleep quality, then children may be at risk for a host of developmental and psychosocial problems, beyond those caused by SCD, as a result of inadequate sleep. Also, poor sleep may affect the disease course, thus exacerbating symptoms. Prevalent sleep disorders in this population are reviewed, including sleep-disordered breathing, periodic limb movements, restless legs syndrome and nocturnal enuresis. Also, the contribution of the disease symptoms pain, hypoxaemia, daytime tiredness and fatigue to disrupted sleep are examined. Finally, the effects of sociodemographic factors, such as poverty and minority status, are described, as these contextual factors significantly impact sleep across several chronic conditions in paediatrics. Frequent monitoring for sleep disruptions can be essential to improving health outcomes and quality of life in children with SCD.