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1.
J Psychosoc Oncol ; 42(1): 32-47, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-37042637

RESUMO

PURPOSE: We investigated sleep-related challenges and their association with family functioning in children and adolescents previously treated for craniopharyngioma. DESIGN: Quantitative approach using psychometrically validated measures. SAMPLE: Thirty-nine children and adolescents who had been treated for craniopharyngioma and their primary caregivers. METHODS: Caregivers and youth completed measures of family functioning, family routines, daytime sleepiness, and children's sleep patterns. FINDINGS: Children and adolescents with craniopharyngioma had significantly higher ratings of self-reported excessive daytime sleepiness, bedtime fears/worries, and restless legs symptoms compared to their relatively healthy peers. Lack of family routines and poor family functioning were related to poor sleep-related outcomes and increased excessive daytime sleepiness. IMPLICATIONS FOR PSYCHOSOCIAL PROVIDERS: Providers should consider assessing sleep difficulties in pediatric brain tumor survivors from a family systems perspective. Intervening on family-related factors may help improve sleep and other health-related outcomes, whereas intervening on sleep may help improve family functioning.


Assuntos
Craniofaringioma , Distúrbios do Sono por Sonolência Excessiva , Neoplasias Hipofisárias , Criança , Humanos , Adolescente , Craniofaringioma/terapia , Sono , Autorrelato , Neoplasias Hipofisárias/terapia
2.
Telemed J E Health ; 30(1): 126-133, 2024 01.
Artigo em Inglês | MEDLINE | ID: mdl-37311170

RESUMO

Introduction: Caregivers of children with chronic illness, such as hematology-oncology conditions, face numerous stressors, and a subset experience persistent distress and poor psychological outcomes. Many logistical and ethical barriers complicate the provision of mental health care to caregivers in children's hospital settings. Telemental health (TMH) is one method to increase access and reduce barriers. Methods: A partnership was established with an outside TMH agency to provide mental health care to caregivers of children with hematology-oncology conditions. Development and implementation strategies are described, and feasibility was measured on four dimensions. Results: One hundred twenty-seven (n = 127) caregivers were referred for TMH services in the first 28 months of program implementation. Of the total, 63/127 (49%) received TMH services for at least one session. Most caregivers had a child in active medical treatment (89%). A small portion (11%) of caregivers were bereaved or had a child in hospice care. Program feasibility was enhanced by hospital leadership support and availability of staffing, financial, and technology resources. Available resources also contributed to the practicality of program development and swift implementation and integration within the defined hospital system. Discussion: Partnership with an outside TMH agency increased access to care and reduced barriers to treating caregivers in a children's hospital setting. Offering mental health interventions to caregivers aligns with evidence-based standards of care. Future research will elucidate caregiver satisfaction with this modality of treatment and whether use of TMH reduces disparities in caregiver receipt of mental health care in children's hospital settings.


Assuntos
Serviços de Saúde Mental , Telemedicina , Criança , Humanos , Cuidadores/psicologia , Telemedicina/métodos , Saúde Mental , Desenvolvimento de Programas
3.
J Psychosoc Oncol ; : 1-16, 2023 Aug 01.
Artigo em Inglês | MEDLINE | ID: mdl-37526202

RESUMO

PURPOSE/OBJECTIVES: We aimed to assess the feasibility and acceptability of mobile ecological momentary assessment (mEMA) for youth with craniopharyngioma and evaluate daily associations among family functioning, affect, and sleep difficulties. DESIGN/RESEARCH APPROACH: Youth completed two mEMA diaries per day for one week. SAMPLE/PARTICIPANTS: Thirty-nine youth who underwent surgery and proton radiotherapy (when indicated) for craniopharyngioma. METHODS/METHODOLOGICAL APPROACH: Descriptive statistics and multi-level modeling were used to examine feasibility and acceptability of mEMA and daily associations among family functioning, affect, and sleep. FINDINGS: Youth reported satisfaction and minimal burden from completing daily mEMA diaries. Poorer family functioning was not related to lower sleep efficiency. CONCLUSIONS/INTERPRETATION: mEMA is an acceptable and feasible method for evaluating sleep and related variables in children and adolescents with craniopharyngioma. IMPLICATIONS FOR PSYCHOSOCIAL PROVIDERS OR POLICY: Results highlight the utility of gathering mEMA data in youth at elevated risk for sleep difficulties as a function of their illness/treatment.

4.
J Psychosom Res ; 172: 111413, 2023 09.
Artigo em Inglês | MEDLINE | ID: mdl-37354749

RESUMO

OBJECTIVE: Disrupted sleep and fatigue are common symptoms in children with cancer, but little is known about this population's sleep health behaviors and how they may impact nighttime sleep. We aimed to describe the sleep health behaviors of children with newly diagnosed cancer and to determine if they changed over the next 8 weeks. METHODS: Our sample included 169 children with cancer (86 males) who were aged 2-18 years (mean [SD] = 8.14 [4.4] y), with parent proxy report for 140 children (71 male) aged 2-12 years (mean [SD] = 6.67 [3.2] y) and self-report for 78 children (39 male) aged 8-18 years (mean [SD] = 12.0 [2.9] y). Parents and patients completed sleep hygiene questionnaires within 30 days of oncology diagnosis (T1); follow-up questionnaires were collected 8 weeks later (T2). Descriptive analyses characterized the sample by sociodemographic characteristics, cancer diagnosis, treatments received, and prescribed medications. RESULTS: Age-related differences were found in sleep health behaviors, with adolescents reporting better overall sleep health behaviors than younger children at both time points. No differences in sleep health behaviors were found at T1 related to diagnosis, treatment, or medications. Some differences in sleep health behaviors were found at T2 related to gender, diagnosis, treatment, and medications. Sleep health behaviors and sleep problems remained relatively stable over 8 weeks. Fatigue was significantly associated with more pre-bedtime worries, insomnia, and lower rates of daytime sleepiness. CONCLUSIONS: These findings offer novel descriptive characteristics of sleep health behaviors in a pediatric oncology sample and show relatively stable yet somewhat poor sleep health behaviors across 8 weeks. Better understanding of sleep health behaviors as modifiable factors will help inform targeted interventions.


Assuntos
Neoplasias , Transtornos do Sono-Vigília , Adolescente , Humanos , Criança , Masculino , Sono , Neoplasias/complicações , Inquéritos e Questionários , Fadiga/etiologia , Fadiga/complicações , Comportamentos Relacionados com a Saúde , Transtornos do Sono-Vigília/complicações
5.
Sleep Med ; 103: 123-130, 2023 03.
Artigo em Inglês | MEDLINE | ID: mdl-36780752

RESUMO

OBJECTIVE/BACKGROUND: Retinoblastoma is an ocular cancer diagnosed in early childhood. Previous research has indicated the impact of cancer treatment on sleep, but little is known about how sleep is impacted among survivors of retinoblastoma. The current study aimed to describe sleep habits of school-age survivors of retinoblastoma, to examine associations between sleep and quality of life, and to examine concordance between parent and child reports of sleep habits. PATIENTS/METHODS: Sixty-nine survivors of retinoblastoma (Mage = 10.89, SD = 1.07, 50.7% female; 56.5% unilateral disease) and their caregivers participated, providing information on both self- and parent-reported sleep habits, quality of life, and demographic data. RESULTS: Greater sleep concerns than national norms were reported by parents (bedtime resistance (t(58) = 2.69, p = .009), greater sleep onset delay (t(66) = 2.46, p = .017), shorter sleep duration (t(57) = 2.12, p = .038), increased daytime sleepiness (t(53) = 6.45, p= <.001)) and children (sleep location (t(61) = 2.39, p = .02), restless legs syndrome (t(62) = -2.21, p = .03), parasomnias (t(64) = 19.19, p=<.001)) . Both children and parents of children who received enucleation endorsed greater sleep concerns across several domains (e.g., electronic use before bed, sleep-disordered breathing). Child- and parent-reported sleep concerns were generally associated with decreased quality of life. Finally, child- and parent-report of sleep habits appeared generally consistent. CONCLUSIONS: Survivors of retinoblastoma experience sleep difficulties. As such, assessment and targeted intervention is important to mitigate any effects on quality of life. Future research should examine sleep habits of survivors of retinoblastoma across cultures and developmental periods.


Assuntos
Neoplasias da Retina , Retinoblastoma , Transtornos do Sono-Vigília , Humanos , Pré-Escolar , Feminino , Criança , Masculino , Qualidade de Vida , Inquéritos e Questionários , Sono , Transtornos do Sono-Vigília/diagnóstico , Sobreviventes , Hábitos
6.
Pediatr Blood Cancer ; 69(9): e29809, 2022 09.
Artigo em Inglês | MEDLINE | ID: mdl-35674474

RESUMO

To provide the standard of psychosocial care for children with cancer and hematological disorders and their families, multidisciplinary teams must clearly define their scope and collaborate in ways that optimize the quality and efficiency of care. A new organizational structure was leveraged to delineate roles and scope for each psychosocial discipline at our institution. We developed a document, the scope of psychosocial care (SPC), that serves as a platform for making patient care decisions and provides opportunities for the reevaluation of programming. Herein, we present the process and outcome of the SPC and make recommendations for identifying roles in pediatric psychosocial hematology-oncology.


Assuntos
Doenças Hematológicas , Hematologia , Neoplasias , Reabilitação Psiquiátrica , Criança , Doenças Hematológicas/terapia , Humanos , Oncologia , Neoplasias/terapia
8.
Behav Sleep Med ; 20(6): 762-773, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-34719997

RESUMO

Craniopharyngioma is a histologically benign brain tumor that arises in the suprasellar region affecting critical neurovascular structures including the hypothalamic-pituitary-adrenal axis and optic pathways. Children with craniopharyngioma often experience excessive daytime sleepiness (EDS) which may be compounded by anxiety and depression. The current study investigated disparate sleep profiles to better understand psychological adjustment among children diagnosed with craniopharyngioma. METHOD: Actigraphs recorded nightly sleep data, including measures of sleep onset latency (SOL) and wake after sleep onset (WASO), in a cohort of 80 youth between the ages of 2 and 20 years (median age = 9). Parent reports of behavioral and emotional functioning were included in the analysis. A latent profile analysis examined disparate sleep profiles, and a multinomial logistic regression examined differences of anxiety and depression among the sleep profiles. RESULTS: The latent profile analysis revealed three sleep profiles: "healthy sleepers" (68.8%), "night wakers" (21.3%), and "prolonged onset sleepers" (10.0%). Contrary to expectations, sleep profiles were not associated with daytime anxiety (ß = 2.26-4.30, p > .05) or depression (ß = -5.87-4.74, p > .05). CONCLUSIONS: Youth with craniopharyngioma demonstrate poor sleep and EDS. Those with delayed SOL and prolonged WASO are particularly vulnerable to disrupted nighttime sleep, which may significantly compound EDS. Disrupted sleep was not associated with anxiety or depression, which may be related to the overall poor sleep and daytime sleepiness or to timing, as patients were early in their treatment course. Further study should evaluate the factors underlying sleepiness and daytime function in patients with craniopharyngioma.


Assuntos
Craniofaringioma , Distúrbios do Sono por Sonolência Excessiva , Neoplasias Hipofisárias , Adolescente , Adulto , Ansiedade/complicações , Criança , Pré-Escolar , Craniofaringioma/complicações , Distúrbios do Sono por Sonolência Excessiva/complicações , Humanos , Sistema Hipotálamo-Hipofisário/metabolismo , Neoplasias Hipofisárias/complicações , Neoplasias Hipofisárias/metabolismo , Sistema Hipófise-Suprarrenal/metabolismo , Adulto Jovem
9.
Psychooncology ; 31(5): 779-787, 2022 05.
Artigo em Inglês | MEDLINE | ID: mdl-34859518

RESUMO

OBJECTIVE: Youth with craniopharyngioma experience weight gain, fragmented sleep, excessive daytime sleepiness (EDS), fatigue, and psychosocial problems that negatively impact their overall health-related quality of life (HRQoL). Greater hypothalamic tumor involvement (HI) may be associated with higher rates or severity of these impairments; however, the direct and indirect impact of HI on the physical and psychosocial consequences associated with pediatric craniopharyngioma remain unclear. The purpose of the current study was to examine relations between HI, body mass index (BMI), fragmented sleep, EDS, fatigue, psychosocial problems, and HRQoL among youth with craniopharyngioma. METHODS: Eighty-four youth with craniopharyngioma (Mage  = 10.27 ± 4.3 years, 53.6% female, 64.3% White) were assessed with actigraphy, nocturnal polysomnography, and multiple sleep latency tests prior to proton therapy, when indicated. Caregivers completed measures of fatigue, psychosocial functioning, and HRQoL. RESULTS: Hypothalamic tumor involvement was associated with greater BMI (Est. = 2.97, p = 0.003) and daytime sleepiness (Est. = 2.53, p = 0.01). Greater fatigue predicted more psychosocial problems (Est. = 0.29, p < 0.001) and lower HRQoL (Est. = 0.23, p = 0.001). Psychosocial problems also predicted lower HRQoL (Est. = -0.34, p = 0.004). Fragmented sleep (Est. = 0.03, p = 0.04) and fatigue (Est. = 0.10, p = 0.02) indirectly predicted lower HRQoL through psychosocial problems. CONCLUSIONS: Youth with craniopharyngioma with greater HI may benefit from weight reduction interventions and management of excessive sleepiness. Patients should be prospectively monitored for sleep problems, fatigue, and psychosocial problems, as these patients may benefit from interventions targeting fatigue and psychosocial health to improve HRQoL.


Assuntos
Craniofaringioma , Distúrbios do Sono por Sonolência Excessiva , Neoplasias Hipotalâmicas , Neoplasias Hipofisárias , Adolescente , Criança , Pré-Escolar , Craniofaringioma/complicações , Craniofaringioma/patologia , Craniofaringioma/terapia , Distúrbios do Sono por Sonolência Excessiva/complicações , Fadiga/complicações , Fadiga/epidemiologia , Feminino , Humanos , Neoplasias Hipotalâmicas/complicações , Masculino , Obesidade/complicações , Neoplasias Hipofisárias/complicações , Neoplasias Hipofisárias/psicologia , Qualidade de Vida , Sono
10.
Behav Sleep Med ; 20(1): 100-111, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-33661060

RESUMO

INTRODUCTION: Craniopharyngioma is a histologically benign brain tumor that arises in the suprasellar region affecting critical neurovascular structures including the hypothalamic-pituitary-adrenal axis and optic pathways. Children with craniopharyngioma often experience excessive daytime sleepiness which may be compounded by anxiety and depression. The current study investigated disparate sleep profiles to better understand psychological adjustment among children diagnosed with craniopharyngioma. Method: Actigraphs recorded nightly sleep data, including measures of sleep onset latency and wake after sleep onset, in a cohort of 80 youth between the ages of 2 and 20 years (median age = 9). Parent reports of behavioral and emotional functioning were included in the analysis. A latent profile analysis examined disparate sleep profiles, and a multinomial logistic regression examined differences of anxiety and depression among the sleep profiles. Results: The latent profile analysis revealed three sleep profiles: "variable sleepers" (48.3%), "consistently poor sleepers" (45.4%), and "night wakers" (6.4%). Consistently poor sleepers had lower rates of anxiety (g = .76; p = .009) and depression (g = .81; p = .003) than variable sleepers and had significantly lower rates of anxiety than night wakers (g = .52; p = .05); all other differences were nonsignificant (ps > .05). Discussion: Youth with craniopharyngioma who have nightly variations in sleep may have worse psychological functioning than those with more consistent, albeit poor, sleep patterns. Patients with craniopharyngioma who report variable sleep should be assessed for anxiety and depression to prevent and intervene on emotional difficulties that may be reciprocally related to sleep.


Assuntos
Craniofaringioma , Neoplasias Hipofisárias , Adolescente , Adulto , Ansiedade , Criança , Pré-Escolar , Craniofaringioma/complicações , Humanos , Sistema Hipotálamo-Hipofisário/metabolismo , Neoplasias Hipofisárias/complicações , Neoplasias Hipofisárias/metabolismo , Sistema Hipófise-Suprarrenal/metabolismo , Sono , Adulto Jovem
11.
J Pediatr Psychol ; 47(3): 306-317, 2022 03 05.
Artigo em Inglês | MEDLINE | ID: mdl-34625800

RESUMO

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.


Assuntos
Neoplasias , Qualidade de Vida , Adolescente , Afeto , Depressão/terapia , Feminino , Humanos , Masculino , Neoplasias/psicologia , Fototerapia , Qualidade de Vida/psicologia , Adulto Jovem
12.
Pediatr Blood Cancer ; 68(11): e29214, 2021 11.
Artigo em Inglês | MEDLINE | ID: mdl-34227729

RESUMO

BACKGROUND: Workplace burnout can result in negative consequences for clinicians and patients. We assessed burnout prevalence and sources among pediatric hematology/oncology inpatient nurses, ambulatory nurses, physicians (MDs), and advanced practice providers (APPs) by evaluating effects of job demands and involvement in patient safety events (PSEs). METHODS: A cross-sectional survey (Maslach Burnout Inventory) measured emotional exhaustion, depersonalization, and reduced personal accomplishment. The National Aeronautics and Space Administration Task Load Index measured mental demand, physical demand, temporal demand, effort, and frustration. Relative weights analyses estimated the unique contributions of tasks and PSEs on burnout. Post hoc analyses evaluated open-response comments for burnout factors. RESULTS: Burnout prevalence was 33%, 20%, 34%, and 33% in inpatient nurses, ambulatory nurses, and MD, and APPs, respectively (N = 481, response rate 69%). Reduced personal accomplishment was significantly higher in inpatient nurses than MDs and APPs. Job frustration was the most significant predictor of burnout across all four cohorts. Other significant predictors of burnout included temporal demand (nursing groups and MDs), effort (inpatient nurses and MDs), and PSE involvement (ambulatory nurses). Open-response comments identified time constraints, lack of administrator support, insufficient institutional support for self-care, and inadequate staffing and/or turnover as sources of frustration. CONCLUSIONS: All four clinician groups reported substantial levels of burnout, and job demands predicted burnout. The body of knowledge on job stress and workplace burnout supports targeting organizational-level sources versus individual-level factors as the most effective prevention and reduction strategy. This study elaborates on this evidence by identifying structural drivers of burnout within a multidisciplinary context of pediatric hematology/oncology clinicians.


Assuntos
Esgotamento Profissional , Hematologia , Oncologia , Segurança do Paciente , Pediatria , Esgotamento Profissional/epidemiologia , Esgotamento Profissional/etiologia , Criança , Estudos Transversais , Humanos , Satisfação no Emprego , Enfermeiras e Enfermeiros , Médicos , Inquéritos e Questionários
14.
Dev Med Child Neurol ; 63(8): 984-990, 2021 08.
Artigo em Inglês | MEDLINE | ID: mdl-33754350

RESUMO

AIM: To examine the impact of clinical factors, cognitive deficits, and sleepiness on health-related quality of life (HRQoL) among young people with craniopharyngioma. METHOD: Seventy-eight patients (67% White; 41 males, 37 females; mean age 10y 8mo, SD 3y 11mo, range 6-20y) with craniopharyngioma were assessed for tumor extent and diabetes insipidus. All patients underwent overnight polysomnography and multiple sleep latency tests after surgical resection. Executive functioning was assessed using parent-reported measures. Patients and their parents completed measures of HRQoL. None had a history of previous radiation therapy. RESULTS: Path analysis was used to test hypothesized relations while controlling for demographic and disease characteristics. Analyses revealed poorer parent-reported HRQoL among young people with greater executive functioning symptoms (estimate -0.83; p<0.001). Direct and indirect effects were found among diabetes insipidus, executive functioning, and parent-reported HRQoL. Diabetes insipidus directly predicted greater global executive functioning impairment (estimate 5.15; p=0.04) and indirectly predicted lower HRQoL through executive functioning impairment (estimate -4.25; p=0.049). No significant effects were found between excessive daytime sleepiness, tumor hypothalamic involvement, diabetes insipidus, executive functioning, and patient-reported HRQoL. INTERPRETATION: These findings suggest that young people with craniopharyngioma presenting with diabetes insipidus may benefit from targeted neurocognitive and psychosocial screening to inform interventions. What this paper adds Children with craniopharyngioma and executive functioning impairment are more likely to have poorer health-related quality of life (HRQoL). Diabetes insipidus, a complication associated with surgery, predicted greater executive functioning impairment. Diabetes insipidus indirectly predicted lower parent-reported HRQoL through executive functioning impairment.


Assuntos
Craniofaringioma/fisiopatologia , Função Executiva/fisiologia , Neoplasias Hipofisárias/fisiopatologia , Qualidade de Vida/psicologia , Sono/fisiologia , Adolescente , Criança , Craniofaringioma/psicologia , Feminino , Humanos , Masculino , Neoplasias Hipofisárias/psicologia , Adulto Jovem
15.
J Clin Sleep Med ; 17(2): 333-335, 2021 02 01.
Artigo em Inglês | MEDLINE | ID: mdl-33100267

RESUMO

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.


Assuntos
Transtornos do Sono-Vigília , Sono , Adolescente , Terapia Comportamental , Criança , Pré-Escolar , Humanos , Lactente , Higiene do Sono , Transplante de Células-Tronco
16.
Behav Sleep Med ; 19(4): 492-504, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-32746639

RESUMO

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.


Assuntos
Fadiga/complicações , Fadiga/terapia , Neoplasias/complicações , Neoplasias/tratamento farmacológico , Fototerapia , Adolescente , Criança , Estudos de Viabilidade , Feminino , Humanos , Masculino , Adulto Jovem
17.
Psychooncology ; 29(3): 465-474, 2020 03.
Artigo em Inglês | MEDLINE | ID: mdl-31654575

RESUMO

Sleep and circadian rhythms are closely related to physical and psychosocial well-being. However, sleep and circadian rhythm disruptions are often overlooked in children with cancer, as they are frequently considered temporary side effects of therapy that resolve when treatment ends. Yet, evidence from adult oncology suggests a bidirectional relationship wherein cancer and its treatment disrupt sleep and circadian rhythms, which are associated with negative health outcomes such as poor immune functioning and lower survival rates. A growing body of research demonstrates that sleep problems are prevalent among children with cancer and can persist into survivorship. However, medical and psychosocial outcomes of poor sleep and circadian rhythmicity have not been explored in this context. It is essential to increase our understanding because sleep and circadian rhythms are vital components of health and quality of life. In children without cancer, sleep and circadian disturbances respond well to intervention, suggesting that they may also be modifiable in children with cancer. We present this paper as a call to (a) incorporate sleep or circadian rhythm assessment into pediatric cancer clinical trials, (b) address gaps in understanding the bidirectional relationship between sleep or circadian rhythms and health throughout the cancer trajectory, and (c) integrate sleep and circadian science into oncologic treatment.


Assuntos
Ritmo Circadiano/fisiologia , Neoplasias/fisiopatologia , Distúrbios do Início e da Manutenção do Sono/epidemiologia , Sono/fisiologia , Criança , Feminino , Humanos , Pediatria/normas , Prevalência , Psico-Oncologia/normas , Qualidade de Vida , Sociedades Médicas/normas
18.
Behav Sleep Med ; 18(5): 589-597, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-31303059

RESUMO

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.


Assuntos
Actigrafia/métodos , Craniofaringioma/diagnóstico por imagem , Polissonografia/métodos , Adolescente , Adulto , Criança , Pré-Escolar , Craniofaringioma/patologia , Feminino , Humanos , Masculino , Adulto Jovem
19.
J Clin Sleep Med ; 15(10): 1487-1493, 2019 10 15.
Artigo em Inglês | MEDLINE | ID: mdl-31596214

RESUMO

STUDY OBJECTIVES: Children with craniopharyngioma are at risk for excessive daytime sleepiness (EDS). Multiple Sleep Latency Testing (MSLT) is the gold standard for objective evaluation of EDS; however, it is time and resource intensive. We compared the reliability, sensitivity, and specificity of the modified Epworth Sleepiness Scale (M-ESS) and MSLT in monitoring EDS in children with craniopharyngioma. METHODS: Seventy patients (ages 6 to 20 years) with craniopharyngioma completed the M-ESS and were evaluated by polysomnography and MSLT. Evaluations were made after surgery, if performed, and before proton therapy. RESULTS: MSLT revealed that 66 participants (81.8%) had EDS, as defined by a mean sleep latency (MSL) < 10 minutes, with only 28.8% reporting EDS on the M-ESS by using a cutoff score of 10. The M-ESS demonstrated adequate internal consistency and specificity (91.7%) but poor sensitivity (33.3%) with the established cutoff score of 10. A cutoff score of 6 improved the sensitivity to 64.8% but decreased the specificity to 66.7%. CONCLUSIONS: Patients with craniopharyngioma are at high risk for EDS, as documented objectively on the MSLT, but they frequently do not recognize or accurately report their sleepiness. Future sleep studies should investigate whether specific items or alternative self- and parent-reported measures of sleepiness may have greater clinical utility in monitoring sleepiness in this population.


Assuntos
Craniofaringioma/complicações , Distúrbios do Sono por Sonolência Excessiva/complicações , Distúrbios do Sono por Sonolência Excessiva/diagnóstico , Neoplasias Hipofisárias/complicações , Adolescente , Adulto , Criança , Craniofaringioma/fisiopatologia , Distúrbios do Sono por Sonolência Excessiva/fisiopatologia , Feminino , Humanos , Masculino , Neoplasias Hipofisárias/fisiopatologia , Polissonografia/estatística & dados numéricos , Reprodutibilidade dos Testes , Sensibilidade e Especificidade , Latência do Sono/fisiologia , Sonolência , Adulto Jovem
20.
Oncol Nurs Forum ; 46(3): 338-347, 2019 05 01.
Artigo em Inglês | MEDLINE | ID: mdl-31007264

RESUMO

OBJECTIVES: To develop an evidence-based compassion fatigue program and evaluate its impact on nurse-reported burnout, secondary traumatic stress, and compassion satisfaction, as well as correlated factors of resilience and coping behaviors. SAMPLE & SETTING: The quality improvement pilot program was conducted with 59 nurses on a 20-bed subspecialty pediatric oncology unit at the St. Jude Children's Research Hospital in Memphis, Tennessee. METHODS & VARIABLES: Validated measures of compassion fatigue and satisfaction (Professional Quality of Life Scale V [ProQOLV]), coping (Brief COPE), and resilience (Connor-Davidson Resilience Scale-2) were evaluated preprogram and at two, four, and six months postprogram, with resilience and coping style measured at baseline and at six months postprogram. RESULTS: Secondary traumatic stress scores significantly improved from baseline to four months. Select coping characteristics were significantly correlated with ProQOLV subscale scores. IMPLICATIONS FOR NURSING: Ongoing organizational support and intervention can reduce compassion fatigue and foster compassion satisfaction among pediatric oncology nurses.


Assuntos
Esgotamento Profissional/prevenção & controle , Fadiga por Compaixão/prevenção & controle , Enfermeiras Pediátricas/psicologia , Enfermagem Oncológica , Enfermagem Pediátrica , Adaptação Psicológica , Adulto , Luto , Esgotamento Profissional/etiologia , Esgotamento Profissional/psicologia , Fadiga por Compaixão/etiologia , Depressão/etiologia , Educação Continuada em Enfermagem , Feminino , Seguimentos , Pesar , Comportamentos Relacionados com a Saúde , Humanos , Satisfação no Emprego , Masculino , Relações Enfermeiro-Paciente , Enfermeiras Pediátricas/educação , Apoio Nutricional , Projetos Piloto , Resiliência Psicológica , Adulto Jovem
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