Family characteristics and childcare patterns associated with early social functioning in cancer-bereaved parents.

BACKGROUND: Bereaved parents experience life-long grief after the death of their child from cancer. Parents who can integrate their grief and maintain their social functioning early in bereavement, even in the setting of concurrent psychosocial distress, have improved outcomes. Identifying the factors associated with bereaved parents' early social functioning can guide future supportive interventions. METHODS: The authors surveyed parents of children who died from cancer at two large centers 6-24 months after death, assessing bereavement experiences using validated and pilot tested tools. Univariable and multivariable logistical regression models were used to examine which family and child demographic, treatment, and end-of-life (EOL) factors were associated with maintained parental social functioning (T scores ≥40 on the Patient-Reported Outcomes Measurement Information System Ability to Participate in Social Roles and Activities-Short Form questionnaire). RESULTS: One hundred twenty-eight parents of 88 children participated (38% household response rate); most parents identified as female (63%) and White (88%). Parents' median age was 47 years (interquartile range, 10 years); and the median time from the child's death to survey completion was 13 months (interquartile range, 10 months). In multivariate modeling, parents without household material hardship and those who felt prepared for EOL circumstances had increased odds of maintained social functioning (odds ratio, 4.7 [95% confidence interval, 1.6-13.7; p < .004] and 5.5 [95% confidence interval, 1.9-15.9; p < .002], respectively). CONCLUSIONS: Parents who felt prepared for their child's EOL and those without household material hardship were more likely to have maintained social functioning in the first 2 years after their child's death. Interventions targeting EOL preparedness and alleviating household material hardship may improve bereavement outcomes.

Factors influencing parents' choice of palliative treatment goals for children with relapsed or refractory neuroblastoma: A multi-site longitudinal survey study.

BACKGROUND: Many parents of children with advanced cancer report curative goals and continue intensive therapies that can compound symptoms and suffering. Factors that influence parents to choose palliation as the primary treatment goal are not well understood. The objective of this study was to examine experiences impacting parents' report of palliative goals adjusted for time. The authors hypothesized that awareness of poor prognosis, recall of oncologists' prognostic disclosure, intensive treatments, and burdensome symptoms and suffering would influence palliative goal-setting. METHODS: The authors collected prospective, longitudinal surveys from parents of children with relapsed/refractory neuroblastoma at nine pediatric cancer centers across the United States, beginning at relapse and continuing every 3 months for 18 months or until death. Hypothesized covariates were examined for possible associations with parental report of palliative goals. Generalized linear mixed models were used to evaluate factors associated with parents' report of palliative goals at different time points. RESULTS: A total of 96 parents completed surveys. Parents were more likely to report a primary goal of palliation when they recalled communication about prognosis by their child's oncologist (odds ratio [OR], 52.48; p = .010). Treatment intensity and previous ineffective therapeutic regimens were not associated with parents' report of palliative goals adjusted for time. A parent who reported new suffering for their child was less likely to report palliative goals (OR, 0.13; p = .008). CONCLUSIONS: Parents of children with poor prognosis cancer may not report palliative goals spontaneously in the setting of treatment-related suffering. Prognostic communication, however, does influence palliative goal-setting. Evidence-based interventions are needed to encourage timely, person-centered prognostic disclosure in the setting of advanced pediatric cancer. PLAIN LANGUAGE SUMMARY: Many parents of children with poor-prognosis cancer continue to pursue curative treatments that may worsen symptoms and suffering. Little is known about which factors influence parents to choose palliative care as their child's main treatment goal. To explore this question, we asked parents of children with advanced neuroblastoma across the United States to complete multiple surveys over time. We found that the intensity of treatment, number of treatments, and suffering from treatment did not influence parents to choose palliative goals. However, when parents remembered their child's oncologist talking about prognosis, they were more likely to choose palliative goals of care.

Parent and oncologist perspectives on prognostic disclosure in advanced childhood cancer: communication pearls and pitfalls.

PURPOSE: For children with advanced cancer and their families, communication about prognosis is critical. Unfortunately, data demonstrate that prognostic communication occurs infrequently and inconsistently across advancing illness. Prior to developing an intervention to improve prognostic communication, we aimed to (1) characterize parent and oncologist perspectives on "best" approaches for prognostic communication, and (2) explore similarities and differences between parent and oncologist perspectives. METHODS: Children with poor-prognosis solid tumors, their parents, and oncologists were followed prospectively for 24 months or until death. Matched semi-structured interviews were conducted with parents and oncologists 0-7 days after medical encounters at timepoints of disease progression or relapse. Reflexive thematic analysis was conducted to describe parent and oncologist impressions of communication quality. RESULTS: A total of 68 interviews were conducted following serial disease reevaluation encounters involving 13 parents and five oncologists. Nine main themes were identified as "best" approaches: (1) speaking with honesty and clarity, (2) leaving room for hope, (3) leaning into a long-standing relationship, (4) personalizing language, (5) empowering the patient and family, (6) collaborating with the multidisciplinary team, (7) providing anticipatory guidance, (8) setting the scene, and (9) creating a therapeutic space. Parents and oncologists generally agreed on themes related to helpful communication approaches, while parents more explicitly described communication pitfalls. CONCLUSION: Parents and oncologists described clear recommendations for helpful communication strategies and pitfalls to avoid during difficult prognostic disclosure. Future work should integrate patient perspectives in the design and testing of an intervention to improve prognostic communication in advanced childhood cancer.

Returning Individual Research Results from Digital Phenotyping in Psychiatry.

Psychiatry is rapidly adopting digital phenotyping and artificial intelligence/machine learning tools to study mental illness based on tracking participants' locations, online activity, phone and text message usage, heart rate, sleep, physical activity, and more. Existing ethical frameworks for return of individual research results (IRRs) are inadequate to guide researchers for when, if, and how to return this unprecedented number of potentially sensitive results about each participant's real-world behavior. To address this gap, we convened an interdisciplinary expert working group, supported by a National Institute of Mental Health grant. Building on established guidelines and the emerging norm of returning results in participant-centered research, we present a novel framework specific to the ethical, legal, and social implications of returning IRRs in digital phenotyping research. Our framework offers researchers, clinicians, and Institutional Review Boards (IRBs) urgently needed guidance, and the principles developed here in the context of psychiatry will be readily adaptable to other therapeutic areas.

Children with cancer at the end of life in a middle-income country: integrated pediatric palliative care improves outcomes.

BACKGROUND: In 2020, the Global Cancer Observatory reported 280,000 cases of childhood cancer worldwide, with a higher burden of disease and mortality rates in low- and middle-income countries. In 2022, the National Institute of Health reported 1708 new cases of childhood cancer in Colombia and an overall survival rate of approximately 55%. The aim of this study is to compare outcomes in children with cancer in the hospital setting during the last 72 h of life who received concurrent Pediatric Palliative Care (PPC) versus oncology care alone. METHODS: An observational descriptive study was conducted between January 2013 and June 2022 in a center for pediatric patients with oncological diagnoses. In 2017, the PPC team was created. Patients between 28 days and 17 years of age who were hospitalized at least 72 h before death were included. A retrospective review of the medical records of patients in the last 72 h of life was performed. Two cohorts were established: oncology-alone group received exclusive management by oncology, and oncology and PPC received concurrent oncology and PPC management since the diagnosis. RESULTS: We evaluated 257 medical records of deceased pediatric patients with cancer diagnoses. For the first cohort (2013-2017), 136 patients were included; for the second cohort (2018 and 2022), 121 patients were evaluated. The most frequent diagnosis was leukemia [47.1% (n = 121)]. No significant difference was found in either group between dyspnea, pain, and seizures. Dyspnea was the most frequent symptom in both groups. Agitation and anxiety were reported more frequently in children from the oncology-alone group (22.1% and 13.2%, respectively). The oncology and PPC group received more psychology and social work consultation (94.2% and 70.2% vs. 84.6 and 54.4% in the oncology alone group) and had a higher percentage of advance care planning (79.3% vs. 62.5% in the oncology alone group). CONCLUSIONS: This retrospective study highlights that PPC at the end of life (EoL) offers a holistic approach to the physical and psychosocial symptoms experienced by children with cancer; these patients received more comfort through symptom management and less aggressive treatment at the EoL. The availability of a PPC team may contribute to improvements in the quality of end-of-life care. TRIAL REGISTRATION: retrospectively registered.

"Understanding why she had to leave me": The roles of religion and spirituality in narratives of parents grieving the loss of a child to cancer.

Religion and spirituality often influence how people experience illness, death, and grief. The roles of religion and spirituality for parents who have lost a child to cancer remain underexplored. This study aimed to describe how cancer-bereaved parents talk about religion and spirituality when reflecting on their experiences. Participants whose children died of cancer one to six years prior to participation completed a one-on-one semi-structured interview. Interview transcripts underwent qualitative analysis. Content pertaining to religion and/or spirituality underwent subsequent in-depth analysis to identify themes. Of 30 interviews analyzed, 28 contained religion/spirituality content. Four themes arose: (1) life after death, (2) divine control, (3) evolution of faith after loss, and (4) religious and spiritual interactions within the medical community. The absence of supports for religious and spiritual needs represents a gap in bereavement care. Future work should clarify needs and explore potential interventions.

Going Virtual: Adapting an Institutional Annual Bereavement Event During the COVID-19 Pandemic.

Our institution's annual bereaved family event was modified to a virtual format during the COVID-19 pandemic. While necessary to comply with physical distancing directives, the transition also provided greater accessibility for families. Virtual events were feasible and appreciated by attendees. Future hybrid bereavement events should be considered to allow families more flexibility and accessibility.

Predicting states of elevated negative affect in adolescents from smartphone sensors: a novel personalized machine learning approach.

BACKGROUND: Adolescence is characterized by profound change, including increases in negative emotions. Approximately 84% of American adolescents own a smartphone, which can continuously and unobtrusively track variables potentially predictive of heightened negative emotions (e.g. activity levels, location, pattern of phone usage). The extent to which built-in smartphone sensors can reliably predict states of elevated negative affect in adolescents is an open question. METHODS: Adolescent participants (n = 22; ages 13-18) with low to high levels of depressive symptoms were followed for 15 weeks using a combination of ecological momentary assessments (EMAs) and continuously collected passive smartphone sensor data. EMAs probed negative emotional states (i.e. anger, sadness and anxiety) 2-3 times per day every other week throughout the study (total: 1145 EMA measurements). Smartphone accelerometer, location and device state data were collected to derive 14 discrete estimates of behavior, including activity level, percentage of time spent at home, sleep onset and duration, and phone usage. RESULTS: A personalized ensemble machine learning model derived from smartphone sensor data outperformed other statistical approaches (e.g. linear mixed model) and predicted states of elevated anger and anxiety with acceptable discrimination ability (area under the curve (AUC) = 74% and 71%, respectively), but demonstrated more modest discrimination ability for predicting states of high sadness (AUC = 66%). CONCLUSIONS: To the extent that smartphone data could provide reasonably accurate real-time predictions of states of high negative affect in teens, brief 'just-in-time' interventions could be immediately deployed via smartphone notifications or mental health apps to alleviate these states.

Response-shift effects in childhood cancer survivors: A prospective study.

BACKGROUND: Treatment-related late effects can worsen over time among cancer survivors. Such worsening health states may trigger changes in internal standards, values, or conceptualization of quality-of-life (QOL). This "response-shift" phenomenon can jeopardize the validity of QOL assessment, and misrepresent QOL comparisons over time. This study tested response-shift effects in reporting future-health concerns among childhood cancer survivors who experienced progression in chronic health conditions (CHCs). METHODS: 2310 adult survivors of childhood cancer from St. Jude Lifetime Cohort Study completed a survey and clinical assessment at two or more timepoints. Based on 190 individual CHCs graded for adverse-event severity, global CHC burden was classified as "progression" or "non-progression". QOL was assessed using the SF-36TM eight domains and physical- and mental-component summary scores (PCS, MCS). A single global item measured concerns about future health. Random-effects models comparing survivors with and without progressive global CHC burden (progressors vs. non-progressors) evaluated response-shift effects (recalibration, reprioritization, reconceptualization) in reporting future-health concerns. RESULTS: Compared with non-progressors, progressors were more likely to de-emphasize (or downplay) overall physical and mental health in evaluating future-health concerns (p-values<0.05), indicating recalibration response-shift, and more likely to de-emphasize physical health earlier rather than later in follow-up (p-value<0.05), indicating reprioritization response-shift. There was evidence for a reconceptualization response-shift with progressor classification associated with worse-than-expected future-health concerns and physical health, and better-than-expected pain and role-emotional functioning (p-values<0.05). CONCLUSION: We identified three types of response-shift phenomena in reporting concerns about future health among childhood cancer survivors. Survivorship care or research should consider response-shift effects when interpreting changes in QOL over time.

Mixed-methods analysis of decisional regret in parents following a child's death from cancer.

BACKGROUND AND OBJECTIVES: Decisional regret is common in bereaved parents. We aimed to identify factors associated with and to explain patterns of parental decisional regret. METHODS: We used a convergent mixed-methods design including quantitative items and free-text responses from a survey of parents 6-24 months from their child's death from cancer. Parents expressed whether they had regrets about decisions during the end of their child's life (Yes/No/I don't know) and elaborated with free text. Results of qualitative content analysis of free-text responses guided development and interpretation of quantitative multinomial models. RESULTS: Parents (N = 123 surveys, N = 84 free text) primarily identified as White (84%), mothers (63%), and primary caregivers (69%) for their children. Forty-seven (38%) parents reported decisional regret, 61 (49%) indicated no regret, and 15 (12%) were unsure. Mothers (relative risk [RR]: 10.3, 95%CI: [1.3, 81.3], p = .03) and parents who perceived greater suffering at the end of their child's life (RR = 3.8, 95%CI: [1.2, 11.7], p = .02) were at increased risk of regret; qualitative evaluation revealed elements of self-blame and difficulty reconciling treatment choices with the ultimate outcome. Preparation for symptoms was associated with decreased risk of regret (RR = 0.1, 95%CI: [0, .3], p < .01) with qualitative reflections focused on balanced teamwork that alerted parents for what to expect and how to make meaningful final memories. CONCLUSIONS: Though decisional regret is common among cancer-bereaved parents, mothers and those who perceive more suffering in their children may be at particular risk. Close collaboration between families and clinicians to prepare for symptoms and proactively attend to and minimize suffering may help alleviate decisional regret.

Navigating prognostic communication when children with poor-prognosis cancer experience prolonged disease stability.

BACKGROUND: Most pediatric patients and families want clear prognostic information across the illness course. Yet when children with poor-prognosis cancer experience prolonged disease stability, uncertainty can make communication particularly challenging. In this study, we aimed to (i) assess how frequently oncologists communicate about prognosis when high-risk cancer does not progress, and (ii) describe prognostic communication patterns in the context of disease stability. PATIENTS AND METHODS: In this prospective, longitudinal, mixed-methods study, we audio-recorded serial disease re-evaluation conversations between children with poor-prognosis cancer, their families, and their primary oncologists. For this secondary analysis, we conducted content analysis across serial conversations among 16 patient-parent-oncologist triads for whom the patient's disease remained stable over the 24-month study period. RESULTS: Prognostic communication was absent in >50% of recorded conversations. Overall, it comprised only 4% of dialog time, nearly 90% of which was dialog about prognostic uncertainty; discussion of curability occurred infrequently. Three distinct patterns for prognostic communication emerged: (a) "Don't know" statements, avoiding or deferring prognostication; (b) "Worry" statements, preparing families for possible future disease progression; and (c) relief-caveat statements, celebrating disease stability while balancing positivity with caution. CONCLUSIONS: Oncologists seldom talked about prognosis with high-risk patients during periods of disease stability; yet when they did, they used thoughtful and effective strategies to prepare families for possible future disease progression. Further research is needed to better understand if, how, and when patients and families with stable disease who are high risk for future disease progression prefer to receive information about prognosis.

Interdisciplinary care of pediatric oncology patients: A survey of clinicians in Central America and the Caribbean.

BACKGROUND: Quality cancer care depends on interdisciplinary communication. This study explored the communication practices of interdisciplinary clinicians, the types of healthcare services for which they engage in interdisciplinary collaboration, and the association between interdisciplinary care and perceived quality of care, as well as job satisfaction. METHODS: We conducted a survey of interdisciplinary clinicians from cancer centers in Guatemala, Honduras, Panama, El Salvador, and Haiti. The survey included 68 items including previously validated tools and novel questions. RESULTS: Total 174 interdisciplinary clinicians completed the survey: nurses (n = 60), medical subspecialists (n = 35), oncologists (n = 22), psychosocial providers (n = 20), surgeons (n = 12), pathologists (n = 9), radiologists (n = 9), and radiation oncologists (n = 5). Oncologists reported daily communication with nurses (95%) and other oncologists (91%). While 90% of nurses reported daily communication with other nurses, only 66% reported daily communication with oncologists, and more than 50% of nurses reported never talking to pathologists, radiologists, radiation oncologists, or surgeons. Most clinicians described interdisciplinary establishment of cancer treatment goals and prognosis (84%), patient preferences (81%), and determination of first treatment modality (80%). Clinicians who described more interdisciplinary collaboration had higher job satisfaction (p = .04) and perceived a higher level of overall quality of care (p = .004). CONCLUSIONS: Clinicians in these limited resource settings describe strong interdisciplinary collaboration contributing to higher job satisfaction and perceived quality of care. However, nurses in these settings reported more limited interdisciplinary communication and care. Additional studies are necessary to further define clinical roles on interdisciplinary care teams and their associations with patient outcomes.

Medical experts and trusted confidants: parent perceptions of the clinician-parent relationship in childhood cancer.

PURPOSE: A childhood cancer diagnosis threatens the health, safety, and security of the child and whole family unit. A strong relationship between the healthcare team and family is integral to provision of holistic support during this time of crisis. Family-centered care necessitates a fluid, therapeutic relationship between parents and the child's healthcare team. This study investigated bereaved parents' perspectives on their relationship with their child's care team and the impact of these relationships on their coping across the cancer trajectory and into bereavement. METHODS: Thirty-one parents whose child died from cancer between 1 and 6 years prior to study enrollment participated in semi-structured interviews about their relationships and interactions with their child's healthcare team across the illness course and into bereavement. We audio-recorded interviews, transcribed them verbatim, and utilized a codebook thematic analysis approach to analyze interview transcripts. RESULTS: Four themes emerged across interviews with parents describing their perceptions of the parent-clinician relationship: (1) a collaborative approach improves perceptions of care, (2) professional trust is core to the relationship, (3) parental personal preference and bias can limit relationship-building, and (4) meaningful connections form on an emotional, individualized level. These themes highlight relational patterns between parents and clinicians that can promote or erode alliance and collaboration. CONCLUSION: Bereaved parents recognize key attributes that influence the parent-clinician relationship. Educating clinicians about parent-identified positive modifiable behaviors (e.g., communication deficits) and awareness of non-modifiable care factors (e.g., individual personality preferences) may enable clinicians to strengthen relationships with parents and ultimately improve quality of care.

Group brief cognitive behavioral therapy for suicide prevention compared to dialectal behavior therapy skills group for military service members: a study protocol of a randomized controlled trial.

BACKGROUND: Suicide is a pressing matter for the military. Not only does it pose a health risk, but suicide also compromises operational readiness. Despite provision of suicide prevention clinical best practices, the Department of Defense suffers several challenges (e.g., clinician shortages) limiting the agency's ability to effectively respond to service member suicide. Implementation of evidence-based suicide-specific group therapy is a possible solution to service member well-being needs and system challenges. Service members can also gain coping skills useful beyond managing suicidal thoughts and behaviors. METHODS: This 2-arm non-inferiority randomized controlled trial compares a group therapy format of Brief Cognitive Behavioral Therapy (i.e., G-BCBT) with Dialectical Behavior Therapy (DBT) Skills Group. Both therapies are delivered in-person at a United States Naval Medical Center. Participants (N = 136) are active-duty service members with recent suicidal thoughts or suicidal behavior. Evaluation features electronically delivered questionnaires at baseline, after each treatment session, and at 3- and 6-month follow-up. DISCUSSION: The primary outcome concerns G-BCBT impacts on suicidal ideation. Secondary outcomes of interest are suicide attempt, psychological distress (e.g., symptoms of depression, anxiety), and self-regulatory skills (e.g., emotion regulation). We also examine self-regulatory skills as treatment moderators. Clinical trial strengths and limitations are reviewed. TRIAL REGISTRATION: This study was registered at Clinicaltrials.gov (protocol NCT05401838).

Health literacy on quality of life for children with cancer: modules on pediatric palliative care.

Objective: To describe the development of educational materials for parents and other caregivers of children with cancer, which utilized a culturally sensitive approach to reduce acceptance barriers to palliative care (PC). Methods: The Pan American Health Organization (PAHO), St. Jude Children's Research Hospital, and partners in Latin America and the Caribbean collaborated in a three-phase project, beginning with a needs assessment survey of caregivers of children with cancer in Peru. Based on this finding, an interdisciplinary team of pediatric PC experts developed educational content that was designed and validated by an international committee of PC and communication experts. Results: The collaboration resulted in the development of an eight-module series that introduces caregivers to key concepts of pediatric PC, including management of pain, quality of life, and end of life care. The series was designed to reduce caregiver stigma associated with PC through culturally sensitive education that addresses the low levels of health literacy among caregivers in Latin America and the Caribbean. In the 15 months since the launch, these modules have been distributed throughout Latin America and were downloaded 2 825 times. Conclusions: Educational materials and anticipatory guidance of PC were considered to be a priority for parents and other caregivers of children with cancer throughout Latin America. The materials developed through this project have been widely utilized and are available through the PAHO website and the Together by St. Jude™ online resource.

Collaboration for success: the Global Initiative for Childhood Cancer in Latin America.

The Global Initiative for Childhood Cancer (GICC) aims to increase the cure rate for children with cancer globally by improving healthcare access and quality. The Pan American Health Organization (PAHO), St. Jude Children's Research Hospital (St. Jude), and collaborators have joined efforts to improve outcomes of children with cancer in Latin America and the Caribbean (LAC) using the CureAll framework. In this article, we describe the process of developing regional resources aimed at accelerating the GICC implementation in LAC. In March 2021, PAHO formed regional working groups to develop core projects aligned with CureAll pillars and enablers. Seven working groups emerged from regional dialogues: early detection, nursing, psychosocial, nutrition, supportive care, treatment abandonment, and palliative care. PAHO arranged regular online meetings under the mentorship and support of St. Jude regional/transversal programs and international mentors. Between April and December 2021, 202 multidisciplinary experts attended 43 online meetings to promote the dialogue between stakeholders to improve childhood cancer outcomes. Fourteen technical outputs were produced: four regional snapshots, four technical documents, two virtual courses, one set of epidemiological country profiles, one educational content series for parents/caregivers, and two communication campaigns. The ongoing dialogue and commitment of PAHO, St. Jude, LAC working committees, and international collaborators are essential foundations to successfully accelerate GICC implementation. This is achievable through the development of materials of regional and global relevance. Further research and evaluation are needed to determine the impact of these strategies and resources on childhood cancer outcomes in LAC and other regions.

La Iniciativa Mundial contra el Cáncer Infantil tiene como objetivo aumentar a nivel mundial la tasa de curación del cáncer infantil mediante la mejora del acceso a la atención de salud y de su calidad. La Organización Panamericana de la Salud (OPS), el St. Jude Children's Research Hospital y los colaboradores han aunado esfuerzos para mejorar los resultados en la población infantil con cáncer en América Latina y el Caribe valiéndose del marco CureAll. En este artículo describimos el proceso de elaboración de recursos regionales destinados a acelerar la aplicación de la Iniciativa Mundial en América Latina y el Caribe.En marzo del 2021, la OPS formó grupos de trabajo regionales para elaborar proyectos básicos que estuvieran en consonancia con los pilares y los elementos facilitadores del CureAll. De los diálogos regionales surgieron siete grupos de trabajo: detección temprana, enfermería, aspectos psicosociales, nutrición, tratamientos de apoyo, abandono del tratamiento y cuidados paliativos. La OPS organizó con regularidad reuniones virtuales en las que se contó con la tutoría y el apoyo de programas regionales o transversales del St. Jude Children's Research Hospital y de mentores internacionales.Entre abril y diciembre del 2021 hubo 43 reuniones virtuales a las que asistieron 202 expertos multidisciplinarios, con el objetivo de promover el diálogo entre las partes interesadas para mejorar los resultados en materia de cáncer infantil. Se elaboraron catorce productos técnicos: cuatro panoramas regionales, cuatro documentos técnicos, dos cursos virtuales, un conjunto de perfiles epidemiológicos de países, una serie con contenidos educativos para padres y cuidadores y dos campañas de comunicación.El diálogo y el compromiso constantes de la OPS, el St. Jude Children's Research Hospital, los comités de trabajo de América Latina y el Caribe y los colaboradores internacionales son las bases fundamentales para conseguir que se acelere la aplicación de la Iniciativa Mundial. Esto se puede lograr mediante la elaboración de materiales que resulten pertinentes a nivel regional y mundial. Son necesarias más investigaciones y evaluaciones para determinar el impacto que tienen estas estrategias y recursos en los resultados que se obtienen en el cáncer infantil en América Latina y el Caribe y en otras subregiones.

A Iniciativa Global para o Câncer Infantil tem como objetivo aumentar a taxa de cura de crianças com câncer no mundo todo, melhorando o acesso a cuidados e a qualidade da assistência médica. A Organização Pan-Americana da Saúde (OPAS), o St. Jude Children's Research Hospital (St. Jude) e colaboradores uniram esforços para melhorar o desfecho de crianças com câncer na América Latina e no Caribe (ALC) no âmbito do marco CureAll. Neste artigo, descrevemos o processo de desenvolvimento de recursos regionais com o objetivo de acelerar a implementação da Iniciativa na ALC.Em março de 2021, a OPAS formou grupos de trabalho regionais para desenvolver projetos centrais alinhados com os pilares e facilitadores do CureAll. A partir das reuniões de diálogo regionais, foram criados sete grupos de trabalho: detecção precoce, enfermagem, atenção psicossocial, nutrição, cuidados de suporte, abandono do tratamento e cuidados paliativos. A OPAS organizou reuniões virtuais regulares sob a orientação e o apoio dos programas regionais e transversais do St. Jude e de mentores internacionais.Entre abril e dezembro de 2021, 202 especialistas multidisciplinares participaram de 43 reuniões virtuais para promover o diálogo entre as partes interessadas a fim de melhorar os desfechos do câncer infantil. Foram produzidos 14 materiais técnicos: quatro panoramas regionais, quatro documentos técnicos, dois cursos virtuais, um conjunto de perfis epidemiológicos nacionais, uma série de conteúdo educacional para pais e cuidadores e duas campanhas de comunicação.O diálogo e o compromisso contínuos da OPAS, do St. Jude, dos comitês de trabalho da ALC e dos colaboradores internacionais são bases essenciais para acelerar com sucesso a implementação da Iniciativa Global para o Câncer Infantil. Isso é possível por meio do desenvolvimento de materiais de relevância regional e mundial. São necessárias mais pesquisas e avaliações para determinar o impacto dessas estratégias e recursos nos resultados do câncer infantil na ALC e em outras regiões.

A comparison of methods to harmonize cortical thickness measurements across scanners and sites.

Results of neuroimaging datasets aggregated from multiple sites may be biased by site-specific profiles in participants' demographic and clinical characteristics, as well as MRI acquisition protocols and scanning platforms. We compared the impact of four different harmonization methods on results obtained from analyses of cortical thickness data: (1) linear mixed-effects model (LME) that models site-specific random intercepts (LMEINT), (2) LME that models both site-specific random intercepts and age-related random slopes (LMEINT+SLP), (3) ComBat, and (4) ComBat with a generalized additive model (ComBat-GAM). Our test case for comparing harmonization methods was cortical thickness data aggregated from 29 sites, which included 1,340 cases with posttraumatic stress disorder (PTSD) (6.2-81.8 years old) and 2,057 trauma-exposed controls without PTSD (6.3-85.2 years old). We found that, compared to the other data harmonization methods, data processed with ComBat-GAM was more sensitive to the detection of significant case-control differences (Χ2(3) = 63.704, p < 0.001) as well as case-control differences in age-related cortical thinning (Χ2(3) = 12.082, p = 0.007). Both ComBat and ComBat-GAM outperformed LME methods in detecting sex differences (Χ2(3) = 9.114, p = 0.028) in regional cortical thickness. ComBat-GAM also led to stronger estimates of age-related declines in cortical thickness (corrected p-values < 0.001), stronger estimates of case-related cortical thickness reduction (corrected p-values < 0.001), weaker estimates of age-related declines in cortical thickness in cases than controls (corrected p-values < 0.001), stronger estimates of cortical thickness reduction in females than males (corrected p-values < 0.001), and stronger estimates of cortical thickness reduction in females relative to males in cases than controls (corrected p-values < 0.001). Our results support the use of ComBat-GAM to minimize confounds and increase statistical power when harmonizing data with non-linear effects, and the use of either ComBat or ComBat-GAM for harmonizing data with linear effects.

Oncologist approaches to communicating uncertain disease status in pediatric cancer: a qualitative study.

BACKGROUND: Most patients with cancer and their caregivers desire honest, clear prognostic communication, yet oncologists often disclose prognosis inconsistently. Prognostic communication becomes even more challenging when disease progression is unclear or equivocal. Presently, oncologist approaches for discussing uncertain disease findings are poorly understood. METHODS: In this prospective, longitudinal study, we audio-recorded serial disease reevaluation conversations between children with high-risk cancer, their families, and their primary oncologists over 24 months and conducted content analysis at recorded timepoints when oncologists categorized disease progression as equivocal. RESULTS: Of the 265 medical discussions recorded across the illness course for 33 patient-parent dyads, a total of 40 recorded discussions took place at equivocal timepoints, comprising > 500 min of medical dialogue. Prognosis talk encompassed < 3% of dialogue and was absent in nearly half of equivocal discussions (17/40, 42.5%). Curability statements were identified in only two conversations. Inductive content analysis of dialogue revealed four distinct patterns for communicating equivocal disease status: (1) up-front reassurance, (2) softening the message, (3) describing possible disease progression without interpretation, (4) expressing uncertainty without discussing the bigger picture. CONCLUSION: Oncologists rarely discuss prognosis with children with high-risk cancer and their families at timepoints when disease progression is not definitive. Formal guidance is needed to better support oncologists in navigating uncertainty while sharing honest, person- and family-centered information about prognosis.

Pediatric palliative care in the community.

Early integration of pediatric palliative care (PPC) for children with life-threatening conditions and their families enhances the provision of holistic care, addressing psychological, social, spiritual, and physical concerns, without precluding treatment with the goal of cure. PPC involvement ideally extends throughout the illness trajectory to improve continuity of care for patients and families. Although current PPC models focus primarily on the hospital setting, community-based PPC (CBPPC) programs are increasingly integral to the coordination, continuity, and provision of quality care. In this review, the authors examine the purpose, design, and infrastructure of CBPPC in the United States, highlighting eligibility criteria, optimal referral models to enhance early involvement, and fundamental tenets of CBPPC. This article also appraises the role of CBPPC in promoting family-centered care. This model strives to enhance shared decision making, facilitate seamless handoffs of care, maintain desired locations of care, and ease the end of life for children who die at home. The effect of legislation on the advent and evolution of CBPPC also is discussed, as is an assessment of the current status of state-specific CBPPC programs and barriers to implementation of CBPPC. Finally, strategies and resources for designing, implementing, and maintaining quality standards in CBPPC programs are reviewed.

Co-management of communication and care in adolescent and young adult oncology.

BACKGROUND: Clinicians have an ethical and practical imperative to engage adolescents and young adults (AYAs) with cancer in communication and care. Many young AYAs have involved parents, but guidelines for co-management of care with AYAs and their parents are lacking. METHODS: We performed 37 semistructured interviews with AYAs aged 12-24 years at diagnosis, recruiting them from two pediatric cancer centers. We performed thematic analysis, aiming to understand how AYAs and their parents navigate their roles in communication and care. RESULTS: We identified six roles that AYAs co-managed with their parents: (1) managing information, (2) managing social and emotional needs, (3) managing health, (4) advocating and empowering, (5) making decisions, and (6) managing logistics. AYAs tended to take more active roles in managing information and more passive roles in managing logistics, managing health, and making decisions. AYAs described how they and their parents had mutual responsibilities to be strong and to protect other's emotions. Additionally, we identified five factors that influenced AYAs' roles in communication and care: (1) AYA agency, (2) clinician encouragement, (3) emotional and physical well-being, (4) personality, preferences, and values, and (5) insights and skills. CONCLUSIONS: AYAs have nuanced preferences for how they are involved in communication and care roles. Clinicians can help families to clarify their preferences and values around these roles in a way that meets each family's unique needs. Future studies should aim to develop tools that support the fulfillment of these engagement goals.