Parent-provider communication dynamics during the pediatric oncology diagnostic process in Guatemala: A qualitative study.

BACKGROUND: Effective communication is founded on bidirectional participation from families and healthcare providers. In adult medicine, bidirectional communication promotes treatment adherence and builds the family-provider relationship. However, the relationship between communication styles in pediatrics remains poorly understood, particularly in culturally diverse settings. This study aims to investigate parent-provider communication dynamics and parental involvement during diagnostic cancer communication in Guatemala. PROCEDURE: This qualitative study included 20 families of children with cancer and 10 providers at Unidad Nacional de Oncología Pediátrica in Guatemala. Psychoeducation and diagnostic conversations between parents, psychologists, and oncologists were recorded and thematically analyzed using a priori and novel codes exploring communication behaviors, parental engagement, and interpersonal dynamics. RESULTS: Participating parents had children with various diagnoses. Only 15% of fathers and 5% of mothers reported education beyond primary school. Providers spoke 68% of words during psychoeducation and 85% of words during diagnosis conversations. Providers used supportive communication behaviors providing explanations, demonstrating verbal attentiveness, and soliciting questions and non-supportive behaviors including paternalistic talk. Parental participation was considered active when they asked questions, expressed hopes or concerns, or asserted their opinions, and non-active when participation was limited to brief responses to closed-ended questions. Supportive provider communication often encouraged active participation; non-supportive communication did not. Furthermore, active parental participation prompted supportive communication from providers, while non-active participation did not. CONCLUSIONS: Our findings highlight the bidirectional nature of effective communication, establishing that provider communication styles both influence and are influenced by parental participation, and emphasizing the importance of supportive provider communication for patient-centered care.

Concomitant Wilms tumor and autosomal dominant polycystic kidney disease.

BACKGROUND: Concomitant Wilms tumor (WT) and autosomal dominant polycystic kidney disease (ADPKD) is exceedingly rare, presenting a diagnostic and technical challenge to pediatric surgical oncologists. The simultaneous workup and management of these disease processes are incompletely described. PROCEDURE: We performed a retrospective analysis of patients treated at our institution with concomitant diagnoses of WT and ADPKD. We also review the literature on the underlying biology and management principles of these conditions. RESULTS: We present three diverse cases of concomitant unilateral WT and ADPKD who underwent nephrectomy. One patient had preoperative imaging consistent with ADPKD with confirmatory testing postoperatively, one was found to have contralateral renal cysts intraoperatively with confirmatory imaging post nephrectomy, and one was diagnosed in childhood post nephrectomy. All patients are alive at last follow-up, and the patient with longest follow-up has progressed to end-stage kidney failure requiring transplantation and dialysis in adulthood. All patients underwent germline testing and were found to have no cancer predisposition syndrome or pathogenic or likely pathogenic variants for WT. CONCLUSION: Concomitant inheritance of ADPKD and development of WT are extremely rare, and manifestations of ADPKD may not present until late childhood or adulthood. ADPKD is not a known predisposing condition for WT. When ADPKD diagnosis is made by family history, imaging, and/or genetic testing before WT diagnosis and treatment, the need for extensive preoperative characterization of cystic kidney lesions in children and increased risk of post-nephrectomy kidney failure warrant further discussion of surgical approach and perioperative management strategies.

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.

Impact of the COVID-19 pandemic on pediatric oncology providers globally: A mixed-methods study.

BACKGROUND: Coronavirus disease 2019 (COVID-19) disrupted pediatric oncology care globally, increasing demands on health care providers (HCPs) who adapted to continue care. This study sought to characterize the pandemic's impact on pediatric oncology HCPs worldwide. METHODS: A 60-item survey focused on changes to clinical care, resources, and effects on clinicians. A diverse subgroup of institutions was purposefully selected for focus groups that explored teamwork, communication, and changes to care delivery. RESULTS: The survey included 311 responses from 213 institutions representing 79 countries. Sixteen institutions participated in 19 multidisciplinary focus groups in 8 languages. Decreased clinical staff availability was cited by 51% of institutions as a major impact. Staffing modifications included decreased provider availability (66% of institutions), roles or responsibility changes, and transfer outside the specialty. Physical effects included frequent COVID-19 illness; 8% of respondents reported HCP deaths. Fifty percent of providers did not have the necessary personal protective equipment. HCPs also experienced psychological distress and financial concerns. Findings indicated more frequent impact on nurses than other providers. Impacts were described across all hospital resource levels, with staffing modifications more frequent in countries with higher COVID-19 incidence (P < .001) and mortality rate (P = .004). Focus groups revealed negative impacts were stabilized by increased teamwork, communication, contributions outside usual roles, policies aimed at optimizing safety, and feeling that they were contributing. CONCLUSIONS: COVID-19 had a profound impact on the pediatric oncology workforce, creating challenging modifications to staffing and resulting in physical, psychological, and financial distress. Despite these challenges, HCPs caring for children with cancer came together to continue to provide high-quality care.

Resilient health care in global pediatric oncology during the COVID-19 pandemic.

BACKGROUND: In the face of unprecedented challenges because of coronavirus disease 2019, interdisciplinary pediatric oncology teams have developed strategies to continue providing high-quality cancer care. This study explored factors contributing to health care resilience as perceived by childhood cancer providers in all resource level settings. METHODS: This qualitative study consisted of 19 focus groups conducted in 16 countries in 8 languages. Seven factors have been previously defined as important for resilient health care including: 1) in situ practical experience, 2) system design, 3) exposure to diverse views on the patient's situation, 4) protocols and checklists, 5) teamwork, 6) workarounds, and 7) trade-offs. Rapid turn-around analysis focused on these factors. RESULTS: All factors of health care resilience were relevant to groups representing all resource settings. Focus group participants emphasized the importance of teamwork and a flexible and coordinated approach to care. Participants described collaboration within and among institutions, as well as partnerships with governmental, private, and nonprofit organizations. Hierarchies were advantageous to decision-making and information dissemination. Clinicians were inspired by their patients and explained creative trade-offs and workarounds used to maintain high-quality care. CONCLUSIONS: Factors previously described as contributing to resilient health care manifested differently in each institution but were described in all resource settings. These insights can guide pediatric oncology teams worldwide as they provide cancer care during the next phases of the pandemic. Understanding these elements of resilience will also help providers respond to inevitable future stressors on health care systems.

Role of implicit bias in pediatric cancer clinical trials and enrollment recommendations among pediatric oncology providers.

BACKGROUND: Provider implicit bias can negatively affect clinician-patient communication. In the current study, the authors measured implicit bias training among pediatric oncology providers and exposure to implicit association tests (IATs). They then assessed associations between IATs for race and socioeconomic status (SES) and recommendations for clinical trial enrollment. METHODS: A prospective multisite study was performed to measure implicit bias among oncology providers at St. Jude Children's Research Hospital and affiliate clinics. An IAT was used to assess bias in the domains of race and SES. Case vignettes were used to determine an association between bias and provider recommendation for trial enrollment. Data were analyzed using Student t tests or Wilcoxon tests for comparisons and Jonckheere-Terpstra tests were used for association. RESULTS: Of the 105 total participants, 95 (90%) had not taken an IAT and 97 (92%) had no prior implicit bias training. A large effect was found for (bias toward) high SES (Cohen d, 1.93) and European American race (Cohen d, 0.96). The majority of participants (90%) had a vignette score of 3 or 4, indicating recommendation for trial enrollment for most or all vignettes. IAT and vignette scores did not significantly differ between providers at St. Jude Children's Research Hospital or affiliate clinics. No association was found between IAT and vignette scores for race (P = .58) or SES (P = .82). CONCLUSIONS: The authors noted a paucity of prior exposure to implicit bias self-assessments and training. Although these providers demonstrated preferences for high SES and European American race, this did not appear to affect recommendations for clinical trial enrollment as assessed by vignettes.

Interdisciplinary care of pediatric oncology patients in Central America and the Caribbean.

BACKGROUND: Interdisciplinary teamwork supports high-quality cancer care and effective utilization of limited resources. This study purposed to examine the value, structure, process, and effectiveness of interdisciplinary care (IDC) among pediatric oncology providers in low-income and middle-income countries in Central America and the Caribbean. METHODS: A cross-sectional survey was disseminated to pediatric oncology providers at 5 centers participating in the Pediatric Hematology-Oncology Association of Central America. The survey included previously validated items and novel questions assessing the value (importance), structure (multidisciplinary meeting attendance), process (team climate), and effectiveness (job satisfaction, quality of care and communication) of IDC. RESULTS: The survey was completed by 174 providers, including 22 oncologists, 9 pathologists, 9 radiologists, 5 radiation oncologists, 12 surgeons, 35 subspecialists, 60 nurses, 20 psychosocial providers, and 2 other staff. Participants agreed that IDC benefits team members (95%) and patients (96%). IDC structure and processes varied across the region. Multidisciplinary meeting attendance differed by center (P = .005) and discipline (P < .0001). Participants who frequently attended multidisciplinary meetings reported a more positive team climate (P = .0003). Team climate was positively associated with job satisfaction (P < .001). In multivariable analyses, team climate was predictive of an improved perception of communication between professionals (P < .0001), with families (P < .0001), and with patients (P = .0005), as well as with quality of the care environment (P = .006) and overall care quality (P < .0001). CONCLUSIONS: Nearly all surveyed participants valued IDC, and the structure and processes supporting IDC varied by center. Associations between a collaborative professional climate, job satisfaction, and the perception of quality care encourage continued investigation and prioritization of IDC in these settings.

Pediatric cancer communication in low- and middle-income countries: A scoping review.

The burden of global childhood cancer lies in low- and middle-income countries (LMICs). Communication is essential to pediatric cancer care, and the National Cancer Institute (NCI) has defined 6 functions of communication between patients, family members, and providers, including 1) fostering healing relationships, 2) responding to emotions, 3) exchanging information, 4) making decisions, 5) managing uncertainty, and 6) enabling self-management. Nevertheless, communication needs and practices in LMICs remain incompletely understood. For this review, the Web of Science, Scopus, PubMed, and Turning Research Into Practice databases were searched according to the Preferred Reporting Items for Systematic Reviews and Meta-Analysis Extension for Scoping Reviews. Searching identified 2988 articles, with 11 added through snowballing. Forty articles met the inclusion criteria. Two reviewers extracted data on study characteristics, communication functions, enablers, barriers, and additional major themes. This review included work from 17 countries. Most studies (85%) used qualitative methodology; the number of participants ranged from 7 to 304. All 6 of the NCI-defined communication functions were identified in included studies, with rates ranging from 100% of studies for information exchange to 28% of studies for decision making. Communication barriers included cancer misconceptions, stigma, and hierarchy between parents and providers. Provider training and community education facilitated communication. Additional themes included disclosure to children, family dynamics, and the multidisciplinary health care team. In conclusion, all 6 of the communication functions defined by the NCI were applied by pediatric cancer researchers in LMICs. Additional barriers, enablers, and communication themes noted in LMICs deserve further exploration, and a relative paucity of research in comparison with high-income countries highlights the need for further work.

A multicountry assessment in Eurasia: Alignment of physician perspectives on palliative care integration in pediatric oncology with World Health Organization guidelines.

BACKGROUND: The World Health Organization (WHO) advocates for early integration of palliative care for all children with life-threatening illness. Provider awareness and misperceptions, however, can impede this imperative. In the Eurasian region, little is known about physician knowledge and perspectives on palliative care. METHODS: The Assessing Doctors' Attitudes on Palliative Treatment survey was developed as an evidence-based and culturally relevant assessment of physician perceptions on palliative care integration into childhood cancer care in Eurasia. Iteratively tested by American and Eurasian palliative care experts, the survey was culturally adapted, translated, and piloted in English, Russian, and Mongolian. The survey was distributed to physicians caring for children with cancer. Fifteen statements were scored in accordance with WHO guidelines to evaluate provider knowledge. The statistical analysis was complemented by a qualitative analysis of open-ended responses. RESULTS: This study received 424 responses from 11 countries in Eurasia. The mean alignment between provider perspectives and WHO recommendations was 70% (range, 7%-100%). Significant independent predictors of higher alignment included country, prior palliative care education, and greater experience with patient death. Respondents primarily described palliative care as end-of-life care and symptom management. Two-thirds of respondents (67%) reported not feeling confident about delivering at least 1 component of palliative care. CONCLUSIONS: This is the first study assessing physician perspectives and knowledge of palliative care in Eurasia and reveals wide variability in alignment with WHO guidelines and limited confidence in providing palliative care. Study findings will inform targeted educational interventions, which must be tailored to the local political, economic, and cultural context.

Barriers to the early integration of palliative care in pediatric oncology in 11 Eurasian countries.

BACKGROUND: The early integration of palliative care significantly improves quality of life for children with cancer. However, cultural, structural, and socioeconomic barriers can delay the integration of palliative care into cancer care, particularly in low-income and middle-income countries. To date, little is known regarding the timing of and barriers to palliative care integration in Eurasia. METHODS: The Assessing Doctors' Attitudes on Palliative Treatment (ADAPT) survey evaluates physician perceptions regarding palliative care integration into pediatric oncology in Eurasia. This evidence-based survey was adapted to the regional context; iteratively reviewed by US and regional panelists; and piloted in English, Russian, and Mongolian. After distribution to physicians caring for children with cancer, statistical analysis was complemented by qualitative analysis of open-ended responses. RESULTS: A total of 424 physician responses were received from 11 countries in the Eurasian region. Study findings demonstrated wide variability in access to palliative care experts across countries (18%-96%), with the majority of providers (64%) reporting that the initial palliative care consultation typically occurs when curative options are no longer available. Providers desired an earlier initial palliative care consultation than what currently occurs in their setting (P < .001). Primary barriers to timely consultation included limited access to palliative care services and specialists, lack of physician education, and perceived family resistance. CONCLUSIONS: The current study is the first to identify physician perceptions of the delayed timing of palliative care integration into childhood cancer care and associated barriers in Eurasia. These findings will inform the development of targeted interventions to mitigate local structural and cultural barriers to access and facilitate earlier palliative care integration in the region.

Things that matter: Adolescent and young adult patients' priorities during cancer care.

BACKGROUND: Adolescents and young adults (AYAs) experience cancer while balancing emerging identity and life goals. We investigated AYAs' priorities during cancer, including psychosocial concerns, cure-directed therapy, and potential late effects. METHODS: We surveyed 203 cancer patients aged 15-29 treated at Dana-Farber Cancer Institute, Boston, Massachusetts, and their oncologists. Patients were approached and rated the importance of aspects of treatment, outcomes, and life during therapy. Response options were "extremely," "very," "somewhat," "a little important," or "not at all important." Ratings of "extremely" or "very important" were used as indicators of strong priorities. RESULTS: Patients' three most frequent priorities were cure (97%), being good to the people they care about (95%), and having supportive people around them (94%). Most prioritized being with family (90%), returning to school/work (89%), maintaining relationships with friends (88%), and feeling normal (85%). Fewer prioritized minimizing long-term (78%) and acute side effects (68%) and fertility (59%). Many participants (88%) said that cure influenced their decisions "a great deal," while fewer were influenced by side effects (32%), fertility (36%), or relationships (16%). Most patients (85%) thought their oncologist understood what was most important to them when treatment started. CONCLUSION: Nearly all AYA cancer patients prioritize cure, while maintaining social relationships and a sense of normalcy. These priorities influence decisions they make about treatment to differing degrees, with cure influencing decision-making for most patients. Although the priority of cure is well established, recognizing other AYA priorities allows providers to optimally support these patients from the time of diagnosis.

Multidisciplinary care meeting practices across diverse international settings.

PURPOSE: Multidisciplinary care (MDC) meetings improve the quality of cancer care by providing a space for interdisciplinary communication. The Pediatric Oncology Facility Integrated Local Evaluation (PrOFILE) tool assesses MDC meetings as part of the Service Integration module. We aimed to evaluate the characteristics of MDC meetings at institutions that completed PrOFILE. METHODS: From 2019 to 2021, 112 institutions from 23 countries collected data by utilizing the abbreviated version of PrOFILE. Within a secondary data analysis, we descriptively analyzed the characteristics of MDC meetings stratified by income level. RESULTS: Participating institutions were located in low-income countries (LICs) (n = 6), lower-middle-income countries (LMICs) (n = 34), upper-middle-income countries (UMICs) (n = 55), and high-income countries (HICs) (n = 17). Of the 112 participating facilities, 79% reported having MDC meetings. The existence of an MDC varied with income, with 50% of LICs and 100% of HICs hosting MDCs. The frequency of MDC meetings also differed, with 100% of MDCs in LICs occurring weekly, while 53% of MDCs in HICs occurred monthly. Specialties regularly represented at MDC meetings across all participating institutions were hematology/oncology (93%), pathology (52%), radiology (60%), general surgery (57%), and radiation oncology (51%). All MDC meetings in LICs reported representation from these specialties. Availability of test results and discussion of new cases did not vary with income. Residual disparities were identified for the following characteristics: discussion of new and interesting cases, inclusion of patient preferences, and ability to meet urgently. CONCLUSIONS: The existence and components of a functional MDC meeting may vary between countries' income levels. Variation in certain components, such as access to tests, may be due to differences in resource distribution, but other factors such as inclusion of patient preferences and ability to meet urgently can be optimized in all settings to foster high-quality teamwork and communication.

Assessment of the quality of interdisciplinary communication (CritCom): evaluation and refinement of a center summary report.

Communication failures among clinicians in the ICU (intensive care unit) often lead to worse patient outcomes. CritCom is a bilingual (English and Spanish) tool to evaluate the quality of interdisciplinary communication around patient deterioration for pediatric oncology patients. The use of reports, such as the CritCom report, as dissemination methods lead to quicker knowledge translation and implementation of research findings into policy. Nurses and physicians at participating centers who care for patients at risk of deterioration completed the CritCom survey and center-specific reports were generated to communicate CritCom results. Focus groups were conducted with clinicians receiving CritCom reports in both English and Spanish to evaluate report clarity and usability. Participants found the reports to be useful and described the writing and design as clear and specific. Participants provided feedback to improve report design and requested actionable steps to improve communication at their center. Feedback illustrated that the report was easy to interpret and a useful way to disseminate information. Participants noted the utility of the report, illustrating that the use of reports can be a useful method to disseminate research findings back to participants in a way that is applicable to the local context. Communicating research findings through reports can minimize the significant time lag in knowledge translation and provide participants with actionable steps to implement in their setting.

Evaluating the Impact of Bowel Gas Variations for Wilms' Tumor in Pediatric Proton Therapy.

(1) Background: Proton therapy, a precise form of radiation treatment, can be significantly affected by variations in bowel content. The purpose was to identify the most beneficial gantry angles that minimize deviations from the treatment plan quality, thus enhancing the safety and efficacy of proton therapy for Wilms' tumor patients. (2) Methods: Thirteen patients with Wilms' tumor, enrolled in the SJWT21 clinical trial, underwent proton therapy. The variations in bowel gas were systematically monitored using daily Cone Beam Computed Tomography (CBCT) imaging. Air cavities identified in daily CBCT images were analyzed to construct daily verification plans and measure water equivalent path length (WEPL) changes. A worst-case scenario simulation was conducted to identify the safest beam angles. (3) Results: The study revealed a maximum decrease in target dose (ΔD100%) of 8.0%, which corresponded to a WEPL variation (ΔWEPL) of 11.3 mm. The average reduction in target dose, denoted as mean ΔD100%, was found to be 2.8%, with a standard deviation (SD) of 3.2%. The mean ΔWEPL was observed as 3.3 mm, with an SD of 2.7 mm. The worst-case scenario analysis suggested that gantry beam angles oriented toward the patient's right and posterior aspects from 110° to 310° were associated with minimized WEPL discrepancies. (4) Conclusions: This study comprehensively evaluated the influence of bowel gas variability on treatment plan accuracy and proton range uncertainties in pediatric proton therapy for Wilms' tumor.

Response of bilateral Wilms tumor to chemotherapy suggests histologic subtype and guides treatment.

BACKGROUND: Patients with bilateral Wilms tumor initially receive neoadjuvant chemotherapy to shrink the tumors and increase the likelihood of successful nephron-sparing surgery. Biopsy of poorly responding tumors is often done to better understand therapy resistance. The purpose of this retrospective, single-institution study was to determine whether initial chemotherapy response is associated with tumor histology, potentially obviating the need for biopsy or change in chemotherapy. METHODS: Patients with synchronous bilateral Wilms tumors who underwent surgery at St Jude Children's Research Hospital from January 2000 to March 2022 were considered for this study. A mixed-effects logistic regression model was used to evaluate the likelihood of the tumor being stromal predominant, as predicted by tumor response to neoadjuvant chemotherapy. RESULTS: A total of 68 patients were eligible for this study. Tumors that increased in size had an odds ratio of 19.5 (95% confidence interval [CI] = 2.46 to 155.03) for being stromal predominant vs any other histologic subtype. Age at diagnosis was youngest in patients with stromal-predominant tumors, with a mean age of 18.8 (14.1) months compared with all other histologic subtypes (χ2 = 7.05, P = .07). The predictive value of a tumor growing combined with patient aged younger than 18 months for confirming stromal-predominant histology was 85.7% (95% CI = 57.18% to 93.5%). CONCLUSIONS: Tumors that increased in size during neoadjuvant chemotherapy were most frequently stromal-predominant bilateral Wilms tumor, especially in younger patients. Therefore, nephron-sparing surgery, rather than biopsy, or extension or intensification of neoadjuvant chemotherapy, should be considered for bilateral Wilms tumors that increase in volume during neoadjuvant chemotherapy, particularly in patients aged younger than 18 months.

Wilms Tumor with Vena Caval Intravascular Extension: A Surgical Perspective.

Wilms tumor (WT) is the most common kidney tumor in pediatric patients. Intravascular extension of WT above the level of the renal veins is a rare manifestation that complicates surgical management. Patients with intravascular extension are frequently asymptomatic at diagnosis, and tumor thrombus extension is usually diagnosed by imaging. Neoadjuvant chemotherapy is indicated for thrombus extension above the level of the hepatic veins and often leads to thrombus regression, obviating the need for cardiopulmonary bypass in cases of cardiac thrombus at diagnosis. In cases of tumor extension to the retrohepatic cava, neoadjuvant therapy is not strictly indicated, but it may facilitate the regression of tumor thrombi, making resection safer. Hepatic vascular isolation and cardiopulmonary bypass increase the risk of bleeding and other complications when utilized for tumor thrombectomy. Fortunately, WT patients with vena caval with or with intracardiac extension have similar overall and event-free survival when compared to patients with WT without intravascular extension when thrombectomy is successfully performed. Still, patients with metastatic disease at presentation or unfavorable histology suffer relatively poor outcomes. Dedicated pediatric surgical oncology and pediatric cardiothoracic surgery teams, in conjunction with multimodal therapy directed by a multidisciplinary team, are preferred for optimized outcomes in this patient population.

Stigma in Pediatric Cancer: An Exploratory Study of Osteosarcoma and Retinoblastoma in Guatemala, Jordan, and Zimbabwe.

PURPOSE: Stigma is an understudied barrier to health care acceptance in pediatric oncology. We sought to explore the stigma experience, including its impact on cancer treatment decision making, and identify strategies to mitigate stigma for patients with osteosarcoma and retinoblastoma in Guatemala, Jordan, and Zimbabwe. METHODS: Participants included caregivers, adolescent patients (age 12-19 years), and health care clinicians. A semistructured interview guide based on The Health Stigma and Discrimination Framework (HSDF) was adapted for use at each site. Interviews were conducted in English, Spanish, Arabic, or Shona, audio-recorded, translated, and transcribed. Thematic analysis focused on stigma practices, experiences, outcomes, drivers, mitigators, and interventions. RESULTS: We conducted 56 interviews (28 caregivers, 19 health care clinicians, nine patients; 20 in Guatemala, 21 in Jordan, 15 in Zimbabwe). Major themes were organized into categories used to adapt the HSDF to global pediatric cancer care. Themes were described similarly across all sites, ages, and diagnoses, with specific cultural nuances noted. Pediatric cancer stigma was depicted as an isolating and emotional experience beginning at diagnosis and including internalized and associative stigma. Stigma affected decision making and contributed to negative outcomes including delayed diagnosis, treatment abandonment, regret, and psychosocial fragility. Overcoming stigma led to positive outcomes including resilience, treatment adherence, pride, and advocacy. Identified stigma drivers and mitigators were linked to potential interventions. CONCLUSION: Participants describe a shared stigma experience that transcends geography, cultural context, age, and diagnosis. Stigma manifestations have the potential to impact medical decision making and affect long-term psychological outcomes. Stigma assessment tools and interventions aimed at stigma mitigation including educational initiatives and support groups specific to pediatric cancer should be the focus of future research.

Sustainability determinants of an intervention to identify clinical deterioration and improve childhood cancer survival in Latin American hospitals: the INSPIRE study protocol.

BACKGROUND: More than 90% of children with cancer live in low-resourced settings, where survival is only 20%. Sustainable evidence-based (EB) interventions yielding ongoing beneficial patient outcomes are critical to improve childhood cancer survival. A better understanding of factors promoting intervention sustainability in these settings is urgently needed. The aim of this study is to provide an empirical understanding of how clinical capacity for sustainability, or the resources needed to sustain an intervention, impacts the sustainment of Pediatric Early Warning System (PEWS), an EB intervention that improves pediatric oncology outcomes in low-resource hospitals by detecting clinical deterioration and preventing the need for more intense treatment. METHODS: We will conduct a prospective, longitudinal study of approximately 100 resource-variable hospitals implementing and sustaining PEWS participating in Proyecto EVAT, a quality improvement collaborative of Latin American pediatric oncology centers. Aim 1: We will evaluate how clinical capacity for sustainability changes over time through 5 to 9 prospective measurements of capacity via survey of clinical staff using PEWS (approximately n = 13 per center) during the phases of PEWS adoption, implementation, and sustainability using the Clinical Sustainability Assessment Tool (CSAT). Aim 2: We will determine the relationship between capacity and a) PEWS sustainment and b) clinical deterioration mortality among pediatric oncology patients at centers sustaining PEWS for 2 to 10 years using chart review and an existing patient outcomes registry. Aim 3: We will develop novel strategies to promote sustainability by gaining a deeper understanding of perceived challenges to building capacity and PEWS sustainment. In combination with quantitative outcomes, we will conduct 24 focus groups with staff (doctors, nurses, and administrators) from hospitals with both high (n = 4) and low capacity (n = 4). We will then use implementation mapping to generate theoretically driven, empirically-supported sustainability strategies. DISCUSSION: This study will advance implementation science by providing a theoretically driven, foundational understanding of factors that predict sustainability among a large, diverse cohort of hospitals. We will then use this knowledge to develop sustainability evidence-informed strategies that optimize capacity and promote long-term sustainment of PEWS and improvements in patient outcomes, thus promoting equity in childhood cancer care globally.