Light Therapy for QoL/Depression in AYA With Cancer: A Randomized Trial.

OBJECTIVE: Secondary outcomes from a published feasibility and acceptability trial were examined to explore the effect of bright white light (BWL) on quality of life (QoL) and depressive symptoms compared to dim red light (DRL) control in adolescents and young adults (AYAs) receiving cancer-directed therapy. METHODS: Fifty-one AYAs (12-22 years, 51% male) newly diagnosed with cancer were randomized to receive 8 weeks of BWL (n = 26) or DRL (n = 25). The CDI-2 (total score, negative mood/physical symptoms, interpersonal problems, ineffectiveness, and negative self-esteem) and parent- and self-report PedsQL (total score and subscales of physical, emotional, social, and school QoL) were completed at multiple timepoints. RESULTS: BWL produced improvements in self-reported total depression (d = -.64; 95% confidence interval [CI] = -1.26, -0.01), negative self-esteem (d = -.80; 95% CI = -1.43, -.14), negative mood/physical symptoms (d = -.73; 95% CI = -1.36, -0.08), ineffectiveness (d = -.43; 95% CI = -1.04, .19), total self-reported QoL (d = .41; 95% CI = -.16, .96), emotional (d = .78; 95% CI = .19, 1.37), school functioning (d = .48; 95% CI = -.09, 1.04), and parent-reported school functioning (d = .66; 95% CI = 0.02, 1.33). BWL reported a greater rate of improvement than DRL for total depression (ß = .49, p < .05) and self-esteem (ß = .44, p < .05), and parent-reported school functioning (ß = -1.68, p < .05). CONCLUSIONS: BWL improved QoL and depressive symptoms for AYAs with cancer. These findings will inform larger randomized controlled trials.

Feasibility and Acceptability of Light Therapy to Reduce Fatigue in Adolescents and Young Adults Receiving Cancer-Directed Therapy.

OBJECTIVE/BACKGROUND: Fatigue is one of the most consistent and distressing symptoms reported by adolescent/young adult (AYA) oncology patients. Bright white light (BWL) is used to treat fatigue in adult oncology but has not been explored in AYA oncology patients. The purpose of the current study was to determine the feasibility and acceptability of BWL for AYA who were receiving cancer-directed therapy. PARTICIPANTS: 51 AYA patients with newly diagnosed solid tumors, including lymphoma. METHODS: Participants were randomized to dim red light (DRL, n = 25) or BWL (n = 26) from devices retrofitted with adherence monitors for 30 minutes upon awakening daily for 8 weeks. Side effects were assessed via modified Systematic Assessment for Treatment-Emergent Effects (SAFTEE). Participants completed the PedsQL Multidimensional Fatigue Scale. RESULTS: Of patients approached, 73% consented and participated. Mean adherence was 57% of days on study with 30.68 average daily minutes of usage. BWL did not cause more extreme treatment-emergent effects over DRL. Patients in the BWL group demonstrated significant improvement on all fatigue outcomes by both self-report and parent proxy report, which was not observed in the DRL group. CONCLUSIONS: This is the first study to evaluate the feasibility and acceptability of light therapy to reduce fatigue in AYA patients receiving cancer-directed therapy. These findings demonstrate the feasibility and acceptability of the intervention and provide preliminary evidence of the potential benefits of BWL, which warrants further study in a confirmatory efficacy trial.ClinicalTrials.gov Identifier Number: NCT02429063.

Actigraphy versus Polysomnography to Measure Sleep in Youth Treated for Craniopharyngioma.

OBJECTIVE/BACKGROUND: Youth with craniopharyngioma are at increased risk for excessive daytime sleepiness and narcolepsy. Polysomnography (PSG) is the gold standard for diagnosing sleep disorders, but is time-intensive, costly, and does not offer an in vivo measure of typical sleep routine. We determined the sensitivity, specificity, and accuracy of actigraphy compared with PSG in measuring nocturnal sleep in pediatric craniopharyngioma. PARTICIPANTS: Fifty youth with craniopharyngioma (age 3-20 years) were assessed by overnight PSG and concurrent actigraphy after surgical resection and before proton therapy. METHODS: PSG and actigraphy data were synchronized utilizing an epoch-by-epoch comparison method. Sensitivity, specificity, and accuracy were calculated using measures of true wake, true sleep, false wake, and false sleep. Bland-Altman plots were conducted to further assess level of agreement. RESULTS: Actigraphy was 93% sensitive (true sleep [TS]) and 87% accurate (ability to detect TS and true wake) in measuring sleep versus wakefulness and was a reliable measure of sleep efficiency (SE) and sleep latency (SL). Specificity (true wake) was poor (55%) and total sleep time (TST) was underestimated by an average of 15.1 min. Wake after sleep onset (WASO) was overestimated by an average of 14.7 min. CONCLUSIONS: Actigraphy was highly sensitive and accurate and was a reliable measure of SE and SL. Although there were differences in TST and WASO measurements by actigraphy and PSG, our findings provide the basis for future studies on the use of actigraphy to monitor treatment response to wakefulness-promoting medications in youth with craniopharyngioma who demonstrate excessive daytime sleepiness.

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.

Behavioral sleep intervention to reduce bedsharing prior to stem cell transplant.

STUDY OBJECTIVES: Sleep disturbance is common in young children who are otherwise healthy and even more so in children with cancer. To address sleep disturbance in early childhood, caregivers may use bedsharing to reduce stress. Although bedsharing is not typically discouraged in children over the age of 1 year, it may present a safety and infection control concern for youth preparing for stem cell transplantation. METHODS: We highlight the successful application of evidence-based sleep interventions to eliminate bedsharing before admission to the stem cell transplantation unit through 3 case examples of patients who were 2 years of age or younger diagnosed with cancer and preparing for stem cell transplantation. RESULTS: The behavioral sleep interventions included sleep hygiene education, gradual fading, unmodified extinction, and graduated extinction. CONCLUSIONS: When medically indicated and tailored to family preferences, behavioral interventions can effectively and efficiently eliminate bedsharing for young children preparing for stem cell transplantation.

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.