Investigating the Role of Hypothalamic Tumor Involvement in Sleep and Cognitive Outcomes Among Children Treated for Craniopharyngioma

Objective: Despite excellent survival prognosis, children treated for craniopharyngioma experience significant morbidity. We examined the role of hypothalamic involvement (HI) in excessive daytime sleepiness (EDS) and attention regulation in children enrolled on a Phase II trial of limited surgery and proton therapy. Methods: Participants completed a sleep evaluation (N = 62) and a continuous performance test (CPT) during functional magnetic resonance imaging (fMRI; n = 29) prior to proton therapy. Results: EDS was identified in 76% of the patients and was significantly related to increased HI extent (p = .04). There was no relationship between CPT performance during fMRI and HI or EDS. Visual examination of group composite fMRI images revealed greater spatial extent of activation in frontal cortical regions in patients with EDS, consistent with a compensatory activation hypothesis. Conclusion: Routine screening for sleep problems during therapy is indicated for children with craniopharyngioma, to optimize the timing of interventions and reduce long-term morbidity

Impact of PEWS on Perceived Quality of Care During Deterioration in Children With Cancer Hospitalized in Different Resource-Settings

BackgroundChildren with cancer are at high risk for clinical deterioration and subsequent mortality. Pediatric Early Warning Systems (PEWS) have proven to reduce the frequency of clinical deterioration in hospitalized patients. This qualitative study evaluates provider perspectives on the impact of PEWS on quality of care during deterioration events in a high-resource and a resource-limited setting.MethodsWe conducted semi-structured interviews with 83 healthcare staff (nurses, pediatricians, oncology fellows, and intensivists) involved in recent deterioration events at two pediatric oncology hospitals of different resource levels: St. Jude Children’s Research Hospital (SJCRH; n = 42) and Unidad Nacional de Oncología Pediátrica (UNOP; n = 41). Interviews were conducted in the participant’s native language (English or Spanish), translated into English, and transcribed. Transcripts were coded and analyzed inductively.ResultsProviders discussed both positive and negative perspectives of clinical deterioration events. Content analysis revealed “teamwork,” “experience with deterioration,” “early awareness,” and “effective communication” as themes associated with positive perception of events, which contributed to patient safety. Negative themes included “lack of communication,” “inexperience with deterioration,” “challenges with technology”, “limited material resources,” “false positive score,” and “objective tool.” Participants representing all disciplines across both institutions shared similar positive opinions. Negative opinions, however, differed between the two institutions, with providers at UNOP highlighting limited resources while those at SJCRH expressing concerns about technology misuse.ConclusionProviders that care for children with cancer find PEWS valuable to improve the quality of hospital care, regardless of hospital resource-level. Identified challenges, including inadequate critical care resources and challenges with technology, differ by hospital resource-level. These findings build on growing data demonstrating the positive impact of PEWS on quality of care and encourage wide dissemination of PEWS in clinical practice

Relationship between circadian activity rhythms and fatigue in hospitalized children with CNS cancers receiving high-dose chemotherapy.

PURPOSE:Robust circadian rhythms are increasingly recognized as essential to good health. Adult cancer patients with dysregulated circadian activity rhythms (CAR) experience greater fatigue, lower responsiveness to chemotherapy, and shorter time to relapse. There is scant research describing circadian rhythms and associated outcomes in children with cancer. As part of a larger study examining whether a cognitive-behavioral intervention could preserve sleep in children and adolescents with central nervous system cancers hospitalized for high-dose chemotherapy (HDCT), this study aimed to compare CAR of these children to published values and to investigate the relationship between CAR and fatigue. METHODS:Participants aged 4-19 years wore an actigraph throughout their hospitalization (5 days). From activity counts recorded by actigraphy, six CAR variables were calculated: amplitude, 24-h autocorrelation (r24), dichotomy index (I < O), interdaily stability (IS), intradaily variability (IV), and acrophase. Parent-reported child fatigue and child/adolescent self-reported fatigue measures were collected daily. RESULTS:Thirty-three participants were included. Three CAR variables (amplitude, r24, and I < O) showed dysregulation compared to published values. Older age was significantly associated with later acrophase and greater dysregulation of all other CAR variables. Controlling for age, more dysregulated amplitude (p = 0.001), r24 (p = 0.003), IS (p = 0.017), and IV (p = 0.001) were associated with higher parent-reported fatigue; more dysregulated IV (p = 0.003) was associated with higher child-reported fatigue. CONCLUSIONS:Participants demonstrated dysregulated CAR during hospitalization for HDCT. Greater dysregulation was associated with greater fatigue. Research on circadian dysregulation and its relationship to health-related outcomes in children with cancer, and interventions to support circadian rhythmicity, is urgently needed

A pilot randomized controlled trial to improve sleep and fatigue in children with central nervous system tumors hospitalized for high‐dose chemotherapy

ObjectivesTo determine whether a sleep intervention compared with standard of care (SOC) was successful in preserving nighttime sleep in children with central nervous system cancers hospitalized for high-dose chemotherapy (HDCT) and autologous stem cell rescue, and to explore associations between sleep and fatigue during treatment.MethodsAn unblinded, randomized, controlled, multicomponent intervention (NCT00666614) including evidence-based cognitive and behavioral strategies to improve sleep was implemented in 33 children (age 4-12 years) and adolescents (age 13-19 years) during hospitalization. Children wore an actigraph to measure sleep and wake, and reported fatigue scores daily. Parents concurrently kept a sleep diary and reported fatigue scores for their children.ResultsThe mean age was 9.5 ± 3.9 years, 81.8% were white, and 60.6% were male. Sleep in all children was seriously disturbed throughout the study. Children in the intervention group maintained their longest nighttime sleep across the study, while it declined in children receiving SOC (P = 0.009 for interaction). There were few other differences in sleep between groups. Controlling for age and baseline fatigue, higher nighttime activity score, and lower percent sleep were significantly associated with higher next-day adolescent-reported fatigue (P < 0.05); longest sleep was significantly positively associated with next-day child-reported fatigue (P = 0.018).ConclusionIn this sample of children undergoing HDCT, a multicomponent sleep intervention modestly preserved nighttime sleep duration, although overall sleep was poor in both groups. Sleep is an integral component of health, and may influence outcomes of children receiving HDCT. Further investigation into methods of preserving sleep in children undergoing intensive cancer therapy is warranted

Multidisciplinary Clinician Perspectives on Embedded Palliative Care Models in Pediatric Cancer

CONTEXT: Integration of palliative care (PC) into pediatric cancer care is considered best practice by national oncology and pediatric organizations. Optimal strategies for PC integration remain understudied, although growing evidence suggests that embedded models improve quality of care and quality of life for patients and families. OBJECTIVE: To describe the perspectives and preferences of multidisciplinary clinicians regarding ideal models for PC integration in pediatric cancer care; to introduce clinicians to the theoretical concept of an embedded care model; to empower clinicians in co-design of a new institutional model through collaborative discussion of anticipated benefits and challenges of embedded model implementation. METHODS: Trained facilitators conducted 24 focus groups, stratified by discipline and care team. Focus groups were audio-recorded and transcribed for inductive content analysis using MAXQDA software. RESULTS: 174 clinicians participated (25 physicians, 30 APPs, 70 nurses, 49 psychosocial clinicians). Clinicians across disciplines verbalized that an embedded PC model would improve access to PC; however, identified benefits and challenges varied by discipline. Benefits included earlier integration of PC (physicians, APPs), normalization of PC as an integral aspect of care by patients/families (nurses, psychosocial), collaboration (physicians, psychosocial clinicians), and communication (APPs, psychosocial). Anticipated challenges included inadequate resources and physician resistance (physicians, APPs, nurses) and multidisciplinary role confusion (APPs, nurses, psychosocial). CONCLUSIONS: Pediatric clinicians recognize the potential value of an embedded PC model. Although some concepts overlapped, multidisciplinary clinicians offered unique beliefs, highlighting the importance of including representative perspectives to ensure that pediatric PC models align with priorities of diverse stakeholders

Children\u27s perspective on health-related quality of life during active treatment for acute lymphoblastic leukemia: An advanced content analysis approach

Background Qualitative research provides insight into the cancer experience through the perspective of the pediatric patient. However, somewhat small sample sizes can hinder full discovery of new knowledge and limit interpretation of data. Objective To describe health-related quality of life (HRQOL) reported by children and adolescents in responses to two interview questions during treatment for acute lymphoblastic leukemia (ALL) and compare their responses by age, gender, risk group, and time in treatment through a quantitative content analysis approach. Interventions/Methods Children and adolescents (N=150) were asked two validated questions in pediatric patients receiving treatment for ALL: “What makes a good day for you” and “How has being sick been for you” over six treatment time points. Interview data were coded analyzed quantitatively. Results Code frequencies differed significantly by age, gender, risk group, and time in treatment. Adolescents had a greater focus on being with friends and females generally reported more codes representing negative experiences. Children and adolescents reported being affected by symptoms resulting from cancer treatment. Some adolescents described that being sick positively changed their lives, and viewed their illness as a new life experience. Conclusion The two proposed questions are feasible to use clinically to assess HRQOL in children and adolescents with ALL, and the qualitative codes from their descriptions can be used to identify factors affecting HRQOL of children and adolescents with leukemia Implications for practice Nurses can use these two questions to assess the HRQOL of children and adolescents during and following treatment for ALL

You are not alone : Connecting through a bereaved parent mentor program for parents whose child died of cancer

BACKGROUND: Bereavement after the death of a child is devastating and associated with worse physical and psychosocial well-being in parents. Evidence suggests that parents desire and benefit from support provided by other bereaved parents. To foster this peer support, an institutional peer-to-peer mentorship program for bereaved parents was established, through which trained bereaved parent mentors offer support for newly bereaved parents. METHODS: Using a retrospective cohort design, we describe the characteristics of participants of the Bereaved Parent Mentorship program. Trained bereaved parent mentors documented encounters with newly bereaved parent mentees using a secure internet-based form. Mentors summarized each encounter including any concerns or need for professional psychosocial support. Descriptive statistics were used to describe mentor and mentee characteristics; free text from encounter summaries was qualitatively analyzed using content analysis. RESULTS: A total of 1368 documented encounters occurred between 150 mentees and 39 mentors from January 1, 2014 to February 29, 2020. Only seven encounters (0.5%) were flagged as serious concern necessitating professional psychosocial support. Four key themes in the encounters between mentors and mentees emerged, including: descriptions of the grief experience, ways in which a mentor supported their mentee, challenges the mentor experienced in supporting the mentee, and personal benefit gained by the mentor from supporting their mentee. CONCLUSION: This structured Bereaved Parent Mentorship program fostered rich interactions between bereaved parent participants, with very few encounters requiring professional assistance. Future research will assess the impact of bereaved mentor programs on resilience and psychosocial, physical, and functional well-being of parents