Lauren D. Brumley

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.

Transitioning Adolescents and Young Adults With Sickle Cell Disease From Pediatric to Adult Health Care: Provider Perspectives.

The transition from pediatric to adult health care is often challenging for adolescents and young adults with sickle cell disease (SCD). Our study aimed to identify (1) measures of success for the transition to adult health care; and (2) barriers and facilitators to this process. We interviewed 13 SCD experts and asked them about their experiences caring for adolescents and young adults with SCD. Our interview guide was developed based on Social-Ecological Model of Adolescent and Young Adult Readiness to Transition framework, and interviews were coded using the constant comparative method. Our results showed that transition success was measured by health care utilization, quality of life, and continuation on a stable disease trajectory. We also found that barriers to transition include negative experiences in the emergency department, sociodemographic factors, and adolescent skills. Facilitators include a positive relationship with the provider, family support, and developmental maturity. Success in SCD transition is primarily determined by the patients’ quality of relationships with their parents and providers and their developmental maturity and skills. Understanding these concepts will aid in the development of future evidence-based transition care models.

Medical and psychosocial associates of nonadherence in adolescents with cancer.

The current study examined adherence to medication regimens among adolescents with cancer by applying the Pediatric Self-Management Model. Adolescents and their parents reported on adherence to medication, reasons for nonadherence, and patient-, family-, and community-level psychosocial variables. Adolescent- and parent-reported adherence were significantly correlated, with about half of the sample reporting perfect adherence. The majority reported “just forgot” as the most common reason for missed medication. Patient-, family-, and community-level variables were examined as predictors of adherence. With regard to individual factors, adolescents who endorsed perfect adherence reported a greater proportion of future-orientated goals and spent fewer days in outpatient clinic visits. For family factors, adolescents who endorsed perfect adherence reported greater social support from their family and were more likely to have a second caregiver who they perceived as overprotective. The community-level variable (social support from friends) tested did not emerge as a predictor of adherence. The results of this study provide direction for intervention efforts to target adolescent goals and family support in order to increase adolescent adherence to cancer treatment regimens.

Pathways from Childhood Adversity to Problem Behaviors in Young Adulthood: The Mediating Role of Adolescents’ Future Expectations

Adverse childhood experiences and pessimistic future expectations about college attendance or mortality are established risk factors for problem behaviors among youth. Data were from the National Longitudinal Study of Adolescent to Adult Health (N = 14,800; 49 % female). Participants were 11–17-years-old at baseline and 24–32-years-old at outcome. Adolescents’ college expectations and fatalistic expectations mediated the effect of childhood adversity on violent behavior in young adulthood. Neither college nor fatalistic expectations were significant mediators in models predicting substance use and nonviolent antisocial behaviors. Although observed mediational effect sizes were small, they survived models that included multiple controls designed to rule-out alternative explanations. Intervening on adversity-exposed adolescents’ college and fatalistic expectations may reduce risk for violent behaviors.

Development and Content Validation of the Transition Readiness Inventory Item Pool for Adolescent and Young Adult Survivors of Childhood Cancer

Objective The development of the Transition Readiness Inventory (TRI) item pool for adolescent and young adult childhood cancer survivors is described, aiming to both advance transition research and provide an example of the application of NIH Patient Reported Outcomes Information System methods. Methods Using rigorous measurement development methods including mixed methods, patient and parent versions of the TRI item pool were created based on the Social-ecological Model of Adolescent and young adult Readiness for Transition (SMART). Results Each stage informed development and refinement of the item pool. Content validity ratings and cognitive interviews resulted in 81 content valid items for the patient version and 85 items for the parent version. Conclusions TRI represents the first multi-informant, rigorously developed transition readiness item pool that comprehensively measures the social-ecological components of transition readiness. Discussion includes clinical implications, the application of TRI and the methods to develop the item pool to other populations, and next steps for further validation and refinement.

Comparing cumulative index and factor analytic approaches to measuring maltreatment in the National Longitudinal Study of Adolescent to Adult Health

Child maltreatment is a complex and multifaceted construct in need of advanced statistical techniques to improve its measurement. The current study compared the predictive utility of a cumulative index to a factor analytic approach for constructing a measure of maltreatment. Data were from Waves III and IV of the National Longitudinal Study of Adolescent to Adult Health (Wave III: n = 14,800; Wave IV: n = 12,288). As adults, participants retrospectively reported on their childhood experiences of physical abuse, sexual abuse, emotional abuse, physical neglect, supervisory neglect, and social services investigations. Both the cumulative index and a two-factor solution showed evidence of convergent validity, predicting lifetime incidence of homelessness, being paid for sex, and various measures of running away or living apart from biological parents, and prospectively predicting depression, substance use, and criminal behavior. The latent variables, derived from a factor analytic approach, had greater explanatory power for many outcomes compared to the cumulative index, even when controlling for sociodemographic variables. Results suggest that factor analysis is a better methodology than a cumulative index for measuring maltreatment in large datasets when explanatory power for external outcomes is of greatest concern.

What a Pain: The Impact of Physical Symptoms and Health Management on Pursuit of Personal Goals Among Adolescents with Cancer

PURPOSE This study examined health-related hindrance (HRH) of personal goals among adolescents receiving treatment for cancer and healthy peers. METHODS Adolescents and parents completed measures of demographics and psychosocial variables. Adolescents reported on their HRH, measured by ratings of the impact of pain, fatigue, other physical symptoms, and doing things to manage their health on self-identified personal goals. Disease-related information was abstracted from patient charts. RESULTS Adolescents with cancer experienced significantly more HRH than healthy peers, and their HRH was significantly associated with poorer health-related quality of life (p < 0.001), negative affect (p = 0.03), and depressive symptoms (p = 0.03). Risk and resilience factors associated with HRH for those with cancer included pain (current and past month severity, frequency, and pain-related quality of life), fatigue, nausea, cognitive problems, worse parent-reported family functioning, and female gender. When testing these significant associates in a regression model predicting HRH among adolescents with cancer, those with more severe pain (p < 0.001) and worse parent-reported family functioning (p = 0.01) were significantly associated with HRH; fatigue was marginally (p = 0.09) significant. CONCLUSIONS Results suggest that HRH is a significant problem for adolescents with cancer, particularly those who are experiencing pain. Addressing pain and other symptom management, enhancing family functioning, and helping adolescents adjust their goals or enhance support for goal pursuit may reduce HRH among adolescents with cancer. This may improve psychosocial well-being, address adolescent unmet needs, and ultimately help adolescents with cancer maintain normal developmental trajectories.