Giving adolescents with cystic fibrosis a voice: Predicting cystic fibrosis nutritional adherence from their decision-making involvement.

OBJECTIVE: Suboptimal nutritional adherence in adolescents with cystic fibrosis (awCF) has been associated with lower lung function. AwCF often have more independence in dietary decisions than younger children, yet little research has examined how adolescent decision-making relates to nutritional adherence. This study explored whether components of adolescent decision-making involvement facilitate enzyme and caloric adherence in awCF. METHODS: 37 families participated and completed study procedures. AwCF and caregivers completed electronic surveys, including the Decision-Making Involvement Scale (DMIS). The DMIS evaluated awCF behaviors during nutrition-related decision-making/discussions with caregivers using DMIS subscales: Child Seek (asking for help/advice from caregivers), Child Express (awCF stating opinions) and Joint/Options (awCF participating in joint decision-making or caregiver providing options). AwCF completed 2, 24-hr diet recalls via videoconferencing/phone to estimate adherence. Chart reviews collected medical information. DMIS subscales were regressed onto enzyme and caloric adherence. RESULTS: 43% of awCF met calorie recommendations; 48.6% took all enzymes as prescribed. Caloric adherence was positively correlated with adolescent- and parent-reported Child Seek (r = 0.53; r = 0.36) and adolescent-reported Joint/Options (r = 0.41). Per adolescent-report, the caloric adherence regression model was significant, with Child Seek contributing unique variance in caloric adherence (ß = .62, p = .03). Parent-reported adolescent-decision-making involvement significantly predicted caloric adherence, but none of the subscales contributed unique variance. No other regressions were significant. CONCLUSIONS: When awCF participated in nutrition-related discussions with a caregiver, especially with questions, caloric adherence was better. Future research should examine whether family factors influence these results. AwCF are encouraged to ask questions in nutrition discussions.

Pretransplant Quality of Life and Post-Transplant Survival in Adolescents with Cystic Fibrosis.

OBJECTIVE: Cystic fibrosis (CF) is the most common indication for pediatric lung transplantation and the third most common for adults. The selection of candidates and timing of transplant is challenging and whether there is a survival benefit of this procedure for pediatric patients is controversial. Use of the Cystic Fibrosis Questionnaire-Revised (CFQ-R), a well-validated, disease-specific quality of life measure may improve pretransplant referral decision-making. METHODS: This multicenter study evaluated whether specific domains on the CFQ-R (i.e., Physical Functioning, Respiratory Symptoms), assessed pretransplant, predicted survival 4-year post-transplant (n = 25). A two-step Cox regression, with physical predictors entered in step one (i.e., age, CF-related Diabetes, FEV1% predicted) and the Physical Functioning and Respiratory Symptoms CFQ-R scales entered in step two, was used to assess whether the CFQ-R explained additional and unique variance. Receiver Operating Characteristic (ROC) curves were used to assess the sensitivity and specificity of optimal cut-points of significant CFQ-R domains. RESULTS: The Respiratory Symptoms scale predicted survival 4-year post-transplant (Exp(B) = 0.38, 95% CI = 0.14-1.01; area under the curve = 0.87) and once it was added to the model, no other individual predictors were significant. The incremental improvement beyond the physical parameters approached but did not reach statistical significance (χ2 Δ = 5.79, p = .06). CONCLUSIONS: This study suggested that including patient-reported outcomes could aid pretransplant referral decision-making. The Respiratory Symptoms scale in particular may serve as a useful tool to help determine when to refer and evaluate an individual for transplant.

Comprehensive psychosocial screening in a pediatric diabetes clinic.

OBJECTIVE: The ISPAD recommends routine, comprehensive psychosocial screening for adolescents with diabetes. However, few clinics have implemented procedures consistent with these guidelines. This study describes the results of a universal, comprehensive psychosocial screening program in an integrated pediatric diabetes clinic located within an academic medical center. RESEARCH DESIGN AND METHODS: Participants included 232 ethnically diverse adolescents with type 1 diabetes (55.5% female; M age = 14.85; 58.5% Hispanic; 20% Black). Adolescents completed screening measures on iPads in the waiting room before their medical visit. The proportion of adolescents screening positive on each psychosocial measure was assessed, and regression analyses evaluated how psychosocial variables accounted for variance in insulin non-adherence and glycemic control (measured by A1c). RESULTS: Psychosocial concerns were common and ranged from 7% of adolescents screening positive for disordered eating and suicide risk to 52% screening positive for low motivation to manage diabetes. A1c and insulin non-adherence were positively correlated with suicide risk, depressive symptoms, anxiety, disordered eating, diabetes stress, blood glucose monitoring stress, family conflict, and total number of elevations, and negatively correlated with intrinsic motivation. Insulin non-adherence, disordered eating, diabetes stress, and family conflict uniquely predicted A1c. Age, motivation, and family conflict uniquely predicted insulin non-adherence. Eighty-three percent of eligible youth completed the screener. Referrals by physicians to the team psychologist increased by 25% after the screening program was implemented. CONCLUSIONS: Comprehensive psychosocial screening can be effectively implemented as part of routine pediatric diabetes care and can identify adolescents in need of additional supports.

Systematic Review of Health Literacy in Childhood Cancer Patients, Survivors, and Their Caregivers.

OBJECTIVE: This systematic review examined the literature regarding health literacy among pediatric cancer patients, survivors, and their caregivers. Specific aims were to identify and summarize measures used, levels of and demographic correlates of health literacy, effects of health literacy interventions, and associations between health literacy and health outcomes. METHODS: The search strategy was executed in the following databases: PubMed, EMBASE, PsycINFO, CINAHL, ERIC, and the Cochrane Library. Of the 842 unique studies retrieved, 9 met the inclusion criteria and were included in the systematic review. RESULTS: Studies used a variety of validated and study-specific measures with no measure emerging as the standard. Levels of health literacy were typically assessed subjectively and across studies the majority of those sampled self-reported adequate health literacy. Few studies examined demographic correlates of health literacy, precluding the identification of consistent predictors. Health literacy intervention research for this population is in its infancy and only pilot projects were identified; effects could not be evaluated. No studies assessed the impact of health literacy on health outcomes. CONCLUSIONS: Very few studies assessed health literacy in pediatric oncology. As treatment for childhood cancer becomes increasingly complex, and patients and caregivers are expected to have adequate understanding of health information, health literacy is a critical construct that should not be overlooked.

Provider perceptions' of a patient navigator for adolescents and young adults with cancer.

PURPOSE: Healthcare providers (HCPs) and other staff at a comprehensive Cancer Center were interviewed on how to best implement a patient navigator position when working with adolescents and young adults (AYA) with cancer. Research objectives included assessing staff perceptions of (a) barriers to optimal care for AYA, (b) roles and responsibilities for a patient navigator, and (c) training needed for future patient navigators. METHODS: Semi-structured interviews were conducted with 17 staff members providing care to AYA. Verbatim transcripts were hand-coded using inductive content analysis. RESULTS: Roles and responsibilities of a patient navigator were described as needing to coordinate services, be knowledgeable of resources inside and outside the Cancer Center, provide emotional support, advocate for AYA, assist with financial and insurance issues, and serving as the first point of contact. CONCLUSIONS: Staff serving AYA reported the desired roles and training they wished a patient navigator to possess. This study contributes to the literature by conducting stakeholder assessment of the goals and roles of an AYA patient navigator (PN). PN positions should be adapted to the workflow and ethos of the institution.

NOURISH-T: Targeting caregivers to improve health behaviors in pediatric cancer survivors with obesity.

BACKGROUND: Obesity rates in pediatric cancer survivors (PCS) are alarmingly high. Although healthy lifestyle changes may prevent future health complications, promoting healthy behaviors in PCS is challenging, and few interventions have successfully addressed this issue. PROCEDURE: This randomized control trial evaluated the feasibility and preliminary effectiveness of a parent-focused six-session intervention, NOURISH-T (Nourishing Our Understanding of Role Modeling to Improve Support and Health for Healthy Transitions), compared with enhanced usual care (EUC) on the outcomes of caregiver and PCS anthropometric measurements, eating behaviors, and physical activity. Behavioral and self-report assessments of caregivers and PCS in both conditions were conducted at baseline, postintervention, and at a 4-month follow-up. RESULTS: In comparison to no change among EUC caregivers, NOURISH-T caregivers showed small yet significant decreases from baseline through follow-up on BMI, waist-hip ratio, and total daily caloric intake. However, there was no change with regard to daily fat and sugar intake. NOURISH-T caregivers also showed positive changes in their child feeding behaviors, including decreases in pressuring their child to eat and restricting their child's eating and increased eating together as a family. Similarly, decreases in BMI percentile, waist-hip ratio, and sugary beverage consumption were found for NOURISH-T PCS from baseline to postintervention. NOURISH-T PCS also significantly increased their daily steps, whereas EUC PCS decreased their daily steps. CONCLUSIONS: Results suggest that an intervention targeting parents is feasible and demonstrates preliminary effectiveness. NOURISH-T showed a longer term effect on caregivers, and, although shorter term effect, a positive impact on the PCS themselves. Implications for ways to improve NOURISH-T as an intervention for increasing healthy behaviors of PCS are discussed.

Psychological factors related to resilience and vulnerability among youth with HIV in an integrated care setting.

Approximately 22% of HIV diagnoses in 2015 occurred among youth aged 13-24. Much is known about the risk factors and psychopathology present in youth living with HIV (YLWH), however, relatively little is known about resiliency in this population. The current study sought to assess factors related to resilience and vulnerability among YLWH as well as the impact of psychosocial factors on these constructs using existing clinical data from an integrated care clinic serving YLWH in the southeastern United States. Data included findings from mental health screeners administered as part of the standard protocol of care for youth aged 13-24 including information about anxiety (GAD-7), post-traumatic stress disorder (PC-PTSD), depression (PHQ-A or PHQ-9), substance use (CRAFFT), and medication adherence (BEHKA-HIV Action subscale) as well as viral load and demographic variables. Hierarchical linear regression was used to determine factors related to biological (viral load) and behavioral indicators of resilience and vulnerability (BEHKA-HIV Action subscale and CRAFFT). Results showed that anxiety was a significant covariate of both biological and behavioral indicators of resilience while gender was a significant factor associated with behavioral indicators of vulnerability. None of the psychological or demographic factors examined in this study were associated with substance use, a behavioral indicator of vulnerability and resilience. Our results support the need for clinicians to screen for and monitor anxiety symptoms among YLWH in integrated care settings in an effort to promote resilience and minimize vulnerability. Practical, evidence-based strategies should be applied in clinical settings to address medication adherence and anxiety among YLWH.

Adolescent and Young Adult Patients with Cancer: Perceptions of Care.

BACKGROUND: Adolescent and young adults with cancer (AYACs) face unique medical, psychosocial, and supportive care needs. The purpose of this study was to identify AYACs perceptions and expectations of cancer care services on and off treatment. METHODS: Semistructured interviews were conducted with 23 AYACs aged 19-38 years (13 on and 10 off treatment), who were receiving care at a comprehensive cancer center. Verbatim transcripts were created from audiotaped interviews and hand coded using inductive content analysis methodology. RESULTS: Perceptions of optimal care were reported by AYACs through two main themes as follows: perceived barriers and facilitators during treatment. Within each main theme were three subthemes, including perceived facilitators reported as the provision of social support, the website and patient portal, and the educational information provided by the cancer center. Younger female AYACs (age 19-31) on active treatment reported perceived barriers to optimal care related to the management of physical and mental health symptoms, while older patients (age 32 and up) on active treatment endorsed a fear of cancer returning. The third perceived barrier equally endorsed by patients both on and off treatment and across age ranges included limited assistance with financial issues. CONCLUSIONS: AYACs reported perceived barriers and facilitators to optimal care. Implications for these findings are discussed in the context of the importance of adding a patient navigator to the AYACs care team.

Screening for depression among youth with HIV in an integrated care setting.

Youth living with HIV (YLWH) are at risk for depression. Depressive symptoms can impact treatment engagement, health outcomes, and quality of life. Early identification of symptoms can guide treatment planning. This study aimed to identify trends in depressive symptoms for YLWH in a specialty-care clinic and follow-up clinical treatment procedures. An archival review of a clinical database provided depression screening information for a sample of 130 YLWH between 11 and 25 years old in the southeastern United States. Findings indicated that approximately 24% of the sample screened positive for depression-risk. Most commonly endorsed symptoms included fatigue (54.3%) and sleep difficulties (48.5%). Depressive symptoms did not differ significantly by age, gender, race, ethnicity, or sexual orientation. Youth who acquired HIV behaviorally were more likely to endorse the critical item (i.e., self-harm and/or suicidal ideation) than youth who acquired HIV perinatally. Forty-percent of the sample (i.e., 51 youth) had a follow-up treatment plan. YLWH who endorsed the critical item were more likely to receive follow-up action when compared to those who did not endorse the item. Despite limitations of the study, findings have important implications for clinical care and future research.