Impact of a Regional Pediatric Hematology/Oncology Fellowship Program in Guatemala.

PURPOSE: This study aimed to describe and assess the regional experience of a pediatric hematology/oncology fellowship program based in Guatemala. METHODS: The Unidad Nacional de Oncología Pediátrica (UNOP) in Guatemala City, Guatemala, is the only hospital in Central America dedicated exclusively to childhood and adolescent cancer. To address the regional need for specialists, a fellowship program in pediatric hematology/oncology was launched in 2003. The UNOP fellowship program comprises 3 years of training. Although the program is based at UNOP, it also includes rotations locally and internationally to enhance clinical exposure. The curriculum is based on international standards to cover clinical expertise, research, professionalism, communication, and health advocacy. Trainees are selected according to country or facility-level need for pediatric hematologists/oncologists, with a plan for them to be hired immediately after completing their training. RESULTS: Forty physicians from 10 countries in Latin America have completed training. In addition, there are currently 13 fellows from five countries in training. Of the graduates, 39 (98%) are now practicing in pediatric hematology/oncology in Latin America. Moreover, many of them have leadership positions within their institutions and participate in research, advocacy, and policy making. Graduates from the UNOP program contribute to institutions by providing care for an increasing number of patients with pediatric cancer. The UNOP program is the first pediatric hematology/oncology fellowship program in the world to be accredited by Accreditation Council for Graduate Medical Education-International, an international body accrediting clinical training programs. CONCLUSION: The UNOP program has trained specialists to increase the available care for children with cancer in Latin America. This regional approach to specialist training can maximize resources and serve as a model for other programs and regions.

A practical method for integrating community priorities in planning and implementing cancer control programs.

PURPOSE: Community engagement is essential in effective public health programs. This paper illustrates the methods used to engage community in the development of a multi-level implementation intervention to address cancer disparities related to hereditary cancer syndromes. METHODS: Implementation Mapping (IM), was used to guide the co-creation of an intervention. Key partners were recruited to a 13-member statewide community advisory board (CAB) representing healthcare and community-based organizations. As part of a needs assessment, a 3-round modified Delphi method with the CAB was used to identify implementation outcomes to use in later steps of IM. An anonymous online survey of a validated community engagement measure assessed CAB members' satisfaction with the process. RESULTS: Using a modified Delphi method as part of the needs assessment of IM, the CAB identified three broad categories of strategies: Changing infrastructure using patient navigation; training and educating patients, navigators and providers; and supporting clinicians in case identification and management. Self-reported satisfaction with the IM and Delphi process was high. CONCLUSIONS: Implementation Mapping facilitated the use of available evidence, new data, and community engagement to identify strategies to improve the delivery of programs to reduce hereditary cancer disparities. The modified Delphi method was easy to administer in a virtual environment and may be a useful for others in community-engaged research.

Rhabdomyosarcoma in low- and middle-income countries: A report from the Asociacion de Hemato-oncología Pediatrica de Centro América (AHOPCA).

This report describes the results of an observational study dedicated to rhabdomyosarcoma developed by the Asociación de Hemato-oncología Pediatrica de Centro América (AHOPCA) between 2001 and 2018. Overall, 337 previously untreated patients < 18 years old were included in the analysis; 58% had unresected disease, and 19% were metastatic at diagnosis. With a median follow-up of 6.6 years, five-year event-free and overall survival rates were 30% and 33%, respectively. Local progression/relapse was the main cause of treatment failure.

Reducing Youth Vaping: A Pilot Test of the Peer-Led "Youth Engaged Strategies for Changing Adolescent Norms!" (YES-CAN!) Program.

Effective prevention interventions are needed to stem the rising tide of nicotine vaping among adolescents. We conducted a quasi-experimental, non-equivalent comparison group pilot study of the effectiveness of the "Youth Engaged Strategies for Changing Adolescent Norms" (YES-CAN!) program for reducing risks for youth nicotine vaping. YES-CAN! is an innovative peer-led program that supports older adolescents in developing and delivering short narrative prevention videos and related prevention education to younger adolescents. High-school and middle-school program participants and non-program comparison group students completed pre and post surveys assessing vaping susceptibility, behavioral intentions, resistance, knowledge, attitudes, perceived harm, and normative beliefs. Vaping knowledge and the perceived number of friends and classmates who vape showed significantly greater pre- to post-program increases among high-school participants compared to non-participants, and positive vaping attitudes demonstrated significantly greater decreases. Among middle-school students, vaping knowledge increased significantly more among program participants compared to non-participants. The findings from this study indicate that the YES-CAN! program holds promise for reducing risks of nicotine vaping among adolescents. This contributes to a growing body of evidence regarding the utility of peer-led approaches to adolescent health promotion. Further evaluation of the YES-CAN! program in a large-scale randomized control trial is warranted to determine its effectiveness in curbing the escalation of youth nicotine vaping that has characterized the past decade. Future studies should monitor program effect on perceptions of vaping prevalence to ensure participation and/or exposure does not inadvertently promote vaping by increasing perceptions that others vape.

Flexibility, adaptation, and roles of patient navigators in oncology during COVID-19.

BACKGROUND: The impact of COVID-19 on cancer care during the first 6 months of the pandemic has been significant. The National Navigation Roundtable Workforce Development Task Group conducted a national survey to highlight the role of patient navigators (PNs). METHODS: An anonymous online survey captured how cancer care navigation changed during 2 phases: 1) March 13 to May 31, 2020; and 2) June 1 to September 4, 2020. Differences between the 2 time periods for categorical variables were assessed using χ2 tests, and 1-way analyses of variance were used for ordinal variables. RESULTS: Almost one-half of PNs expected changes in duties (49%) during phase 1. By phase 2, PNs showed greater confidence in retaining PN work (P < .001) and reduced changes to duties (P < .01). PNs reported new training on COVID-19 and telehealth during phase 1 (64% and 27%, respectively) and phase 2 (54% and 19%, respectively). Significant decreases in service delays were identified by phase 2 for cancer screening (P < .001), preventive care (P < .001), medical treatment (P < .01), cancer treatment (P < .001), and cancer survivorship services (P < .01). PNs reported that the top patient issues were COVID-19 concerns, medical care disruptions, and finances, and there were decreases in medical care disruptions (P < .01) during phase 2. PNs addressed myths related to mask use, COVID-19 spread, disbelief, risk, clinical changes, transmission prevention, and finances/politics. CONCLUSIONS: The PN role demonstrated resiliency and adaptability. Both clinical and nonclinical oncology PNs identified key patient needs and can provide connections with patient populations that have been economically and socially marginalized, which is necessary to build trust throughout the pandemic.

Exploring classes of cancer patient navigators and determinants of navigator role retention.

BACKGROUND: In the current nationwide study, the authors used latent class analysis (LCA) to identify classes of cancer patient navigators (CPNs) and examined whether class membership and 12 indicators were related to navigator role retention. METHODS: By using data from 460 CPNs in the United States, LCA identified classes (ie, homogenous subgroups) of CPNs with the following indicators: type of CPN (clinical vs nonclinical), education level, area(s) of the cancer care continuum in which the CPN provided patient navigation, region and urbanity where the CPN provided services, organizational work setting, and patient navigation program funding source. The associations of navigator retention with class membership and each indicator were examined using χ2 tests. RESULTS: LCA identified 3 classes of CPNs. Classes 1 and 3 were conceptualized as distinct, homogeneous subgroups of clinical CPNs that appeared to differ mainly on their likelihood of engagement in outreach, survivorship, palliative care, and end-of-life patient navigation. Class 2 was conceptualized as a nonclinical CPN subgroup that was distinct primarily based on their high endorsement of employment in programs, which are at least partially funded by grants and engagement in earlier stages of patient navigation (eg, early detection). The provision of survivorship and treatment patient navigation was related to navigator role retention, with senior CPNs providing these patient navigation services more than novice CPNs. CONCLUSIONS: The current study highlights 3 distinct classes of CPNs, provides initial information regarding determinants of navigator retention, and makes several recommendations for future patient navigation research.

Comparing clinical and nonclinical cancer patient navigators: A national study in the United States.

BACKGROUND: A nationwide survey was conducted to examine differences between clinical and nonclinical oncology navigators in their service provision, engagement in the cancer care continuum, personal characteristics, and program characteristics. METHODS: Using convenience sampling, 527 oncology navigators participated and completed an online survey. Descriptive statistics, χ2 statistics, and t tests were used to compare nonclinical (eg, community health worker) and clinical (eg, nurse navigators) navigators on the provision of various navigation services, personal characteristics, engagement in the cancer care continuum, and program characteristics. RESULTS: Most participants were clinical navigators (76.1%). Compared to nonclinical navigators, clinical navigators were more likely to have a bachelor's degree or higher (88.6% vs 69.6%, P < .001), be funded by operational budgets (84.4% vs 35.7%, P < .001), and less likely to work at a community-based organization or nonprofit (2.0% vs 36.5%, P < .001). Clinical navigators were more likely to perform basic navigation (P < .001), care coordination (P < .001), treatment support (P < .001), and clinical trial/peer support (P = .005). Clinical navigators were more likely to engage in treatment (P < .001), end-of-life (P < .001), and palliative care (P = .001) navigation. CONCLUSIONS: There is growing indication that clinical and nonclinical oncology navigators perform different functions and work in different settings. Nonclinical navigators may be more likely to face job insecurity because they work in nonprofit organizations and are primarily funded by grants.

Preventing intimate partner violence among foreign-born Latinx mothers through relationship education during nurse home visiting.

AIMS: This study aimed to examine the effectiveness of an augmented home visiting programme in preventing intimate partner violence among Latinx mothers by nativity. BACKGROUND: Intimate partner violence diminishes home visit programmes' effectiveness. Immigrant Latinx mothers are especially vulnerable and need culturally tailored prevention. METHODS: We performed secondary analyses of 33 US-born and 86 foreign-born Latinx mothers at baseline and 1- and 2-year follow-up in a longitudinal randomized controlled trial of the Nurse-Family Partnership programme augmented with nurse-delivered Within My Reach relationship education curriculum and violence screening and referrals in Oregon. We estimated proportional odds models via generalized estimating equations on total physical and sexual victimization and/or perpetration forms (an ordinal variable), adjusting for intervention, wave, age and education. RESULTS: The intervention-nativity interaction was not significant (p = .953). Foreign-born status was associated with lower reported violence at baseline (adjusted odds ratio: 0.29, 95% confidence interval: 0.13-0.67, p = .004). This association was marginally significant at 1-year follow-up (0.43, 0.17-1.08, p = .072) and not significant at 2-year follow-up (0.75, 0.33-1.67, p = .475). CONCLUSIONS: This augmented programme was not effective for Latinx mothers by nativity. Their nativity gap diminished over time. IMPLICATIONS FOR NURSING MANAGEMENT: Nursing leaders should support culturally tailored home visiting programmes to detect and prevent intimate partner violence affecting Latinx immigrants. CLINICAL TRIAL REGISTRATION: This study is registered at www. CLINICALTRIALS: gov NCT01811719. The full trial protocol can be accessed at https://clinicaltrials.gov/ct2/show/NCT01811719.

Los Hermanos de Niños con Autismo: Habilidades Lingüísticas y Motrices más allá de los Tres Años / Siblings of children with Autism: Linguistic and motor skills beyond three years of life

Los hermanos de niños con trastorno del espectro autista (H-TEA) pueden mostrar dificultades tempranas en habilidades lingüísticas y motrices, aunque pocos estudios examinan estas habilidades en niños más mayores. Analizamos dichas habilidades en niños entre 4 y 7 años para saber si las dificultades permanecen, y conocer su magnitud. Se examinó el lenguaje expresivo, receptivo, motricidad fina y gruesa en 43 niños: 25 H-TEA y 18 hermanos de niños con desarrollo típico (H-DT) en diferentes pruebas estandarizadas. Los resultados indican que hay diferencias significativas (todas con ps < .05) entre ambos grupos, mostrando el grupo H-TEA peor desempeño lingüístico receptivo en comprensión gramatical y en motricidad, en dimensión de puntería y motricidad global. Se concluye que ser conscientes de esas dificultades lingüísticas y motrices y detectarlas, ayudará a los niños en su desarrollo global. Son necesarios estudios en H-TEA en etapas de infantil y primaria para saber cómo afectarán estas diferencias al ámbito escolar.

Siblings of children with autism spectrum disorder (Sib-ASD) may show difficulties in language and motor skills at a very early age. However, few studies have evaluated these skills in older children. We analyze these skills in children between 4 and 7 years old to test whether these difficulties still exist and, if so, to describe how this magnitude is. We examined expressive and receptive language, and fine and gross motor skills of 43 children: 25 Sib-ASD and 18 siblings of children with typical development (Sib-TD) through several standardized tests. The results show that there are significant differences (all with ps < .05) between groups, showing a worse performance in grammatical comprehension, and related to motor skills in ball skills and overall motor skills in Sib-ASD. It is discussed that the fact of being aware of and identify these difficulties will help these children in their global development. Thus, more studies on sib-ASD in infancy and primary school are needed, in order to know how these differences might affect their school performance.

Gaps in Hospital and Skilled Nursing Facility Responsibilities During Transitions of Care: a Comparison of Hospital and SNF Clinicians' Perspectives.

BACKGROUND: Adverse outcomes are common in transitions from hospital to skilled nursing facilities (SNFs). Gaps in transitional care processes contribute to these outcomes, but it is unclear whether hospital and SNF clinicians have the same perception about who is responsible for filling these gaps in care transitions. OBJECTIVE: We sought to understand the perspectives of hospital and SNF clinicians on their roles and responsibilities in transitional care processes, to identify areas of congruence and gaps that could be addressed to improve transitions. DESIGN: Semi-structured interviews with interdisciplinary hospital and SNF providers. PARTICIPANTS: Forty-one clinicians across 3 hospitals and 3 SNFs including nurses (8), social workers (7), physicians (8), physical and occupational therapists (12), and other staff (6). APPROACH: Using team-based approach to deductive analysis, we mapped responses to the 10 domains of the Ideal Transitions of Care Framework (ITCF) to identify areas of agreement and gaps between hospitals and SNFs. KEY RESULTS: Although both clinician groups had similar conceptions of an ideal transitions of care, their perspectives included significant gaps in responsibilities in 8 of the 10 domains of ITCF, including Discharge Planning; Complete Communication of Information; Availability, Timeliness, Clarity and Organization of Information; Medication Safety; Educating Patients to Promote Self-Management; Enlisting Help of Social and Community Supports; Coordinating Care Among Team Members; and Managing Symptoms After Discharge. CONCLUSIONS: As hospitals and SNFs increasingly are held jointly responsible for the outcomes of patients transitioning between them, clarity in roles and responsibilities between hospital and SNF staff are needed. Improving transitions of care may require site-level efforts, joint hospital-SNF initiatives, and national financial, regulatory, and technological fixes. In the meantime, building effective hospital-SNF partnerships is increasingly important to delivering high-quality care to a vulnerable older adult population.

Community health workers and non-clinical patient navigators: A critical COVID-19 pandemic workforce.

The COVID-19 pandemic has resulted in substantial morbidity and mortality and challenged public health agencies and healthcare systems worldwide. In the U.S., physical distancing orders and other restrictions have had severe economic and societal consequences. Populations already vulnerable in the United States have experienced worse COVID-19 health outcomes. The World Health Organization has made recommendations to engage at risk populations and communicate accurate information about risk and prevention; to conduct contract tracing; and to support those affected by COVID-19. This Commentary highlights the ways in which an existing and cost-effective, but underutilized workforce, community health workers and non-clinical patient navigators, should be deployed to address the COVID-19 pandemic. Community health workers and non-clinical patient navigators have skills in community engagement and health communication and are able to gain the trust of vulnerable communities. Furthermore, many community health workers and non-clinical patient navigators have skills in assisting community members with meeting basic needs and with navigating public health and healthcare systems. Members of this workforce are more than prepared to conduct contact tracing. State, local, tribal, and territorial public health agencies and healthcare systems should be collaborating with national, state, and local organizations that represent and employ CHWs/non-clinical patient navigators to determine how to better mobilize this workforce to address the COVID-19 pandemic. Furthermore, Congress, the Centers for Medicare & Medicaid Services (CMS), and individual states need to adopt policies to sustainably fund their critically needed services in the long term.

Frequency of Pathogenic Germline Variants in Cancer-Susceptibility Genes in Patients With Osteosarcoma.

Importance: Osteosarcoma, the most common malignant bone tumor in children and adolescents, occurs in a high number of cancer predisposition syndromes that are defined by highly penetrant germline mutations. The germline genetic susceptibility to osteosarcoma outside of familial cancer syndromes remains unclear. Objective: To investigate the germline genetic architecture of 1244 patients with osteosarcoma. Design, Setting, and Participants: Whole-exome sequencing (n = 1104) or targeted sequencing (n = 140) of the DNA of 1244 patients with osteosarcoma from 10 participating international centers or studies was conducted from April 21, 2014, to September 1, 2017. The results were compared with the DNA of 1062 individuals without cancer assembled internally from 4 participating studies who underwent comparable whole-exome sequencing and 27 173 individuals of non-Finnish European ancestry who were identified through the Exome Aggregation Consortium (ExAC) database. In the analysis, 238 high-interest cancer-susceptibility genes were assessed followed by testing of the mutational burden across 736 additional candidate genes. Principal component analyses were used to identify 732 European patients with osteosarcoma and 994 European individuals without cancer, with outliers removed for patient-control group comparisons. Patients were subsequently compared with individuals in the ExAC group. All data were analyzed from June 1, 2017, to July 1, 2019. Main Outcomes and Measures: The frequency of rare pathogenic or likely pathogenic genetic variants. Results: Among 1244 patients with osteosarcoma (mean [SD] age at diagnosis, 16 [8.9] years [range, 2-80 years]; 684 patients [55.0%] were male), an analysis restricted to individuals with European ancestry indicated a significantly higher pathogenic or likely pathogenic variant burden in 238 high-interest cancer-susceptibility genes among patients with osteosarcoma compared with the control group (732 vs 994, respectively; P = 1.3 × 10-18). A pathogenic or likely pathogenic cancer-susceptibility gene variant was identified in 281 of 1004 patients with osteosarcoma (28.0%), of which nearly three-quarters had a variant that mapped to an autosomal-dominant gene or a known osteosarcoma-associated cancer predisposition syndrome gene. The frequency of a pathogenic or likely pathogenic cancer-susceptibility gene variant was 128 of 1062 individuals (12.1%) in the control group and 2527 of 27 173 individuals (9.3%) in the ExAC group. A higher than expected frequency of pathogenic or likely pathogenic variants was observed in genes not previously linked to osteosarcoma (eg, CDKN2A, MEN1, VHL, POT1, APC, MSH2, and ATRX) and in the Li-Fraumeni syndrome-associated gene, TP53. Conclusions and Relevance: In this study, approximately one-fourth of patients with osteosarcoma unselected for family history had a highly penetrant germline mutation requiring additional follow-up analysis and possible genetic counseling with cascade testing.

Treatment challenges and support needs of underserved Hispanic patients diagnosed with lung cancer and head-and-neck cancer.

Purpose: We explored the treatment challenges and support needs that Hispanic underserved lung cancer and head-and-neck cancer patients face while undergoing cancer treatment.Design: Qualitative design - ethnography.Sample: Using a sample of 29 participants, we conducted semi-structured interviews with nine lung cancer and head-and-neck cancer survivors and seven health care providers and focus group interviews with six caregivers and seven patient navigators.Method: Relevant themes were extracted with Ethnographic content analysis.Findings: Participants reported treatment challenges and support needs in four areas: medical, financial, socio-cultural, and mental health. Health care providers and navigators primarily identified medical and financial challenges that impact treatment adherence, while patients and caregivers expressed the need for support for mental health problems (i.e., depression, anxiety).Implications for psychosocial providers: Understanding the experiences of underserved Hispanic cancer survivors can aid in creating psychosocial interventions that successfully target treatment-related challenges and provide them with the support they need.

Perceived Costs of Care Influence Post-Acute Care Choices by Clinicians, Patients, and Caregivers.

BACKGROUND/OBJECTIVE: Older adults frequently receive post-acute care (PAC) after hospital discharge, but little is known about how perceived costs influence PAC choices. This research study sought to understand how clinicians, patients, and their caregivers evaluate the cost of skilled nursing facility (SNF) care in their decisions about whether to utilize SNFs after hospital discharge. DESIGN: Guided by principles of social constructivist theory, we conducted a qualitative interpretative study using semistructured interviews with clinicians, patients, and caregivers. SETTING: The study took place in three SNFs and three hospitals located in an urban area. Purposive sampling was used to maximize variability in SNFs, hospitals, units within hospitals, and staff. PARTICIPANTS: A total of 104 participants made up the study: 25 hospital clinicians, 20 SNF clinicians, 20 hospital patients, 15 SNF patients, 14 hospital caregivers, and 10 SNF caregivers who were directly involved in patients' transition from acute hospitalization to SNFs. MEASUREMENTS: Central themes related to how perceived costs of care influence PAC choices. RESULTS: Clinicians, patients, and caregivers did not understand the nuances of SNF insurance coverage or out-of-pocket costs. They felt constrained by insurance coverage in their discharge disposition choices and faced delays in hospital discharge due to insurance authorization processes. Some clinicians reacted to these constraints by "documenting failure," sending patients home to "fail" so they could justify SNF to insurers. Others changed their recommendations to provide patients "some" postdischarge care, even if inadequate, because of cost constraints. Clinicians discussed conserving resources to take maximal advantage of insurance-covered SNF days. Overall, cost constraint resulted in patient safety concerns, clinician professional dilemma, and moral distress. CONCLUSION: Improving patient and caregiver understanding about costs and constraints of PAC would improve decision making. There is a need for improved comprehension of cost and insurance coverage of SNF care for informed patient and provider decision making at the time of hospital discharge. J Am Geriatr Soc 67:703-710, 2019.

Promoting guideline-based cancer genetic risk assessment for hereditary breast and ovarian cancer in ethnically and geographically diverse cancer survivors: Rationale and design of a 3-arm randomized controlled trial.

BACKGROUND: Although national guidelines for cancer genetic risk assessment (CGRA) for hereditary breast and ovarian cancer (HBOC) have been available for over two decades, less than half of high-risk women have accessed these services, especially underserved minority and rural populations. Identification of high-risk individuals is crucial for cancer survivors and their families to benefit from biomedical advances in cancer prevention, early detection, and treatment. METHODS: This paper describes community-engaged formative research and the protocol of the ongoing randomized 3-arm controlled Genetic Risk Assessment for Cancer Education and Empowerment (GRACE) trial. Ethnically and geographically diverse breast and ovarian cancer survivors at increased risk for hereditary cancer predisposition who have not had a CGRA are recruited through the three statewide cancer registries. The specific aims are to: 1) compare the effectiveness of a targeted intervention (TP) vs. a tailored counseling and navigation(TCN) intervention vs. usual care (UC) on CGRA utilization at 6 months post-diagnosis (primary outcome); compare the effectiveness of the interventions on genetic counseling uptake at 12 months after removal of cost barriers (secondary outcome); 2) examine potential underlying theoretical mediating and moderating mechanisms; and 3) conduct a cost evaluation to guide dissemination strategies. DISCUSSION: The ongoing GRACE trial addresses an important translational gap by developing and implementing evidence-based strategies to promote guideline-based care and reduce disparities in CGRA utilization among ethnically and geographically diverse women. If effective, these interventions have the potential to reach a large number of high-risk families and reduce disparities through broad dissemination. TRIAL REGISTRATION NUMBER: NCT03326713; clinicaltrials.gov.

Establishing Cancer Treatment Programs in Resource-Limited Settings: Lessons Learned From Guatemala, Rwanda, and Vietnam.

Purpose The global burden of cancer is slated to reach 21.4 million new cases in 2030 alone, and the majority of those cases occur in under-resourced settings. Formidable changes to health care delivery systems must occur to meet this demand. Although significant policy advances have been made and documented at the international level, less is known about the efforts to create national systems to combat cancer in such settings. Methods With case reports and data from authors who are clinicians and policymakers in three financially constrained countries in different regions of the world-Guatemala, Rwanda, and Vietnam, we examined cancer care programs to identify principles that lead to robust care delivery platforms as well as challenges faced in each setting. Results The findings demonstrate that successful programs derive from equitably constructed and durable interventions focused on advancement of local clinical capacity and the prioritization of geographic and financial accessibility. In addition, a committed local response to the increasing cancer burden facilitates engagement of partners who become vital catalysts for launching treatment cascades. Also, clinical education in each setting was buttressed by international expertise, which aided both professional development and retention of staff. Conclusion All three countries demonstrate that excellent cancer care can and should be provided to all, including those who are impoverished or marginalized, without acceptance of a double standard. In this article, we call on governments and program leaders to report on successes and challenges in their own settings to allow for informed progression toward the 2025 global policy goals.

The early dissemination of patient navigation interventions: results of a respondent-driven sample survey.

Patient navigators (PNs) coordinate medical services and connect patients with resources to improve outcomes, satisfaction, and reduce costs. Little national information is available to inform workforce development. We analyzed 819 responses from an online PN survey conducted in 2009-2010. Study variables were mapped to the five Consolidated Framework for Implementation Research (CFIR) constructs to explore program variations by type of PN. Five logistic regression models compared each PN type to all others while adjusting for covariates. Thirty-five percent of respondents were nurse navigators, 28% lay navigators, 20% social work (SW)/counselor navigators, 7% allied health navigators, and 10% were "other" types of PNs. Most were non-Hispanic White (71%), female (94%), and at least college educated (70%). The primary differences were observed among: the core intervention tasks; position structure; work setting; health conditions navigated; navigator race/ethnicity; personal cancer experiences; navigation training; and patient populations served. Lay PNs had fewer odds of identifying as Hispanic, work in rural settings and assist underserved populations compared to others. Nurse navigators showed greater odds of clinical responsibilities, work in hospital or government settings and fewer odds of navigating minority populations compared to others. SW/counselor navigators also had additional duties, provided greater assistance to Medicare patient populations, and less odds of navigating underserved populations than others. In summary, our survey indicates that the type of PN utilized is an indicator of other substantial differences in program implementation. CFIR provides a robust method to compare differences and should incorporate care coordination outcomes in future PN research.

What are patient navigators doing, for whom, and where? A national survey evaluating the types of services provided by patient navigators.

OBJECTIVE: A nationwide cross-sectional study was conducted to assess patient navigator, patient population, and work setting characteristics associated with performance of various patient navigation (PN) tasks. METHODS: Using respondent-driven sampling, 819 navigators completed a survey assessing frequency of providing 83 PN services, along with information about themselves, populations they serve, and setting in which they worked. Analyses of variance and Pearson correlations were conducted to determine differences and associations in frequency of PN services provided by various patient, navigator, and work setting characteristics. RESULTS: Nurse navigators and navigators with lower education provide basic navigation; social workers typically made arrangements and referrals; and individuals with higher education, social workers, and nurses provide treatment support and clinical trials/peer support. Treatment support and clinical trials/peer support are provided to individuals with private insurance. Basic navigation, arrangements and referrals, and care coordination are provided to individuals with Medicaid or no insurance. CONCLUSION: Providing basic navigation is a core competency for patient navigators. There may be two different specialties of PN, one which seeks to reduce health disparities and a second which focuses on treatment and emotional support. PRACTICE IMPLICATIONS: The selection and training of patient navigators should reflect the specialization required for a position.

Improvement in treatment abandonment in pediatric patients with cancer in Guatemala.

BACKGROUND: Treatment refusal and abandonment are major causes of treatment failure for children with cancer in low- and middle-income countries (LMICs), like Guatemala. This study identified risk factors for and described the intervention that decreased abandonment. METHODS: This was a retrospective study of Guatemalan children (0-18 years) with cancer treated at the Unidad Nacional de Oncología Pediátrica (UNOP), 2001-2008, using the Pediatric Oncology Network Database. Treatment refusal was a failure to begin treatment and treatment abandonment was a lapse of 4 weeks or longer in treatment. The impact of medicina integral, a multidisciplinary psychosocial intervention team at UNOP was evaluated. Cox proportional hazards analysis identified the effect of demographic and clinical factors on abandonment. Kaplan-Meier analysis estimated the survival. RESULTS: Of 1,789 patients, 21% refused or abandoned treatment. Abandonment decreased from 27% in 2001 to 7% in 2008 following the implementation of medicina integral. Factors associated with increased risk of refusal and abandonment: greater distance to the centre (P < 0.001), younger age (P = 0.017) and earlier year of diagnosis (P < 0.001). Indigenous race/ethnicity (P = 0.002) was associated with increased risk of abandonment alone. Abandonment correlated with decreased overall survival: 0.57 ± 0.02 (survival ± standard error) for those who completed therapy versus 0.06 ± 0.02 for those who abandoned treatment (P < 0.001) at 8.3 years. CONCLUSION: This study identified distance, age, year of diagnosis and indigenous race/ethnicity as risk factors for abandonment. A multidisciplinary intervention reduced abandonment and can be replicated in other LMICs.