A Survivorship Educational Tool for Latino Adolescent and Young Adult Cancer Survivors.

BACKGROUND: Low receipt of survivorship care by Latino adolescent and young adult (AYA) cancer survivors necessitates development of age-appropriate and culturally tailored interventions aimed at increasing their perceived need for survivorship care. METHOD: This study describes the development and acceptability testing of a culturally tailored intervention, a photonovela, as part of a community-partnered participatory research (CPPR) project. A four-step approach to the photonovela's development was implemented: (a) literature review, (b) RAND-modified Delphi method, (c) photonovela booklet development, and (d) photonovela acceptability testing through focus groups. Using the CPPR approach, community and academic experts and members worked together at all stages of this project to identify educational domains for the photonovela and ensure that community views and scientific knowledge were equally represented. RESULTS: Cancer survivors and their families described the photonovela as entertaining and relatable. Its story positively reflected their own experiences, and they connected strongly with its characters. Acceptability testing of the photonovela played a significant role in its final script and content, and provided additional new insights into understanding survivorship care perspectives for Latino AYA survivors and their families. CONCLUSION: Equal and shared community and academic involvement through CPPR is essential in identifying unique needs and developing culturally acceptable educational interventions for Latino AYA cancer survivors. The photonovela was seen as an important educational resource in enhancing knowledge and increasing perceived need for survivorship care in this population.

Engaging Latino Adolescent and Young Adult (AYA) Cancer Survivors in Their Care: Piloting a Photonovela Intervention.

Latino adolescent and young adult (AYA) cancer survivors represent a growing population given the changing demographics in the USA. They experience significant healthcare disparities and barriers that warrant age-specific and culturally appropriate interventions to improve their clinical and psychosocial outcomes. This single-arm pilot study evaluated a novel intervention - a photonovela - on its ability to educate Latino AYA survivors and their family members and engage them in survivorship care. Ninety-seven participants (Latino AYA survivors and their family members) were recruited for this study. Three surveys assessing survivorship care confidence, cancer stigma, and survivorship care knowledge were administered to families before they received the photonovela, after the intervention, and at a booster phone call session. Mixed effects models were used to evaluate differences in scores at the three time points while accounting for repeated measures and family clustering. Results show that the photonovela was effective in improving survivorship care confidence and knowledge of Latino AYA survivors and their families. This pilot study indicates that the photonovela has potential to be a useful intervention for improving confidence and knowledge regarding the need to seek survivorship care for Latino AYA cancer survivors.

Hyperammonemia From Ureaplasma Infection in an Immunocompromised Child.

Idiopathic hyperammonemia is a rare, poorly understood, and often lethal condition that has been described in immunocompromised patients. This report describes an immunocompromised patient with acute myelogenous leukemia who developed persistent hyperammonemia up to 705 µmol/L (normal, 0 to 47 µmol/L) refractory to multiple different therapies. However, after beginning azithromycin and then doxycycline therapy for Ureaplasma species infection, the patient showed immediate and sustained clinical improvement and resolution of ammonia levels. Recognizing disseminated Ureaplasma species infection as a potential cause of idiopathic hyperammonemia, an unexplained, often fatal condition in immunocompromised patients, and empirically treating for this infection could potentially be lifesaving.

Racial and ethnic disparities in neurocognitive, emotional, and quality-of-life outcomes in survivors of childhood cancer: A report from the Childhood Cancer Survivor Study.

BACKGROUND: Survivors of childhood cancer are at risk of neurocognitive impairment, emotional distress, and poor health-related quality of life (HRQOL); however, the effect of race/ethnicity is understudied. The objective of this study was to identify race/ethnicity-based disparities in neurocognitive, emotional, and HRQOL outcomes among survivors of childhood cancer. METHODS: Self-reported measures of neurocognitive function, emotional distress (the Brief Symptom Inventory-18), and HRQOL (the Medical Outcomes Study Short Form-36 health survey) were compared between minority (Hispanic, n = 821; non-Hispanic black [NHB], n = 600) and non-Hispanic white (NHW) (n = 12,287) survivors from the Childhood Cancer Survivor Study (median age, 30.9 years; range, 16.0-54.1 years). By using a sample of 3055 siblings, the magnitude of same-race/same-ethnicity survivor-sibling differences was compared between racial/ethnic groups, adjusting for demographic and treatment characteristics and current socioeconomic status (SES). RESULTS: No clear pattern of disparity in neurocognitive outcomes by race/ethnicity was observed. The magnitude of the survivor-sibling difference in the mean score for depression was greater in Hispanics than in NHWs (3.59 vs 1.09; P = .004). NHBs and Hispanics had greater survivor-sibling differences in HRQOL than NHWs for mental health (NHBs: -5.78 vs -0.69; P = .001; Hispanics: -3.87 vs -0.69; P = .03), and social function (NHBs: -7.11 vs -1.47; P < .001; Hispanics: -5.33 vs -1.47; P = .001). NHBs had greater survivor-sibling differences in physical subscale scores for HRQOL than NHWs. In general, the findings were not attenuated by current SES. CONCLUSIONS: Although no pattern of disparity in neurocognitive outcomes was observed, differences across many HRQOL outcomes among minorities compared with NHWs, not attenuated by current SES, were identified. This suggests that further research into environmental and sociocultural factors during and immediately after treatment is needed.

Comparison of self-report and electronic monitoring of 6MP intake in childhood ALL: a Children's Oncology Group study.

Adequate exposure to oral 6-mercaptopurine (6MP) during maintenance therapy for childhood acute lymphoblastic leukemia (ALL) is critical for sustaining durable remissions; accuracy of self-reported 6MP intake is unknown. We aimed to directly compare self-report to electronic monitoring (Medication Event Monitoring System [MEMS]) and identify predictors of overreporting in a cohort of 416 children with ALL in first remission over 4 study months (1344 patient-months for the cohort) during maintenance therapy. Patients were classified as "perfect reporters" (self-report agreed with MEMS), "overreporters" (self-report was higher than MEMS by ≥5 days/month for ≥50% of study months), and "others" (not meeting criteria for perfect reporter or overreporter). Multivariable logistic regression examined sociodemographic and clinical characteristics, 6MP dose intensity, TPMT genotype, thioguanine nucleotide levels, and 6MP nonadherence (MEMS-based adherence <95%) associated with the overreporter phenotype; generalized estimating equations compared 6MP intake by self-report and MEMS. Self-reported 6MP intake exceeded MEMS at least some of the time in 84% of patients. Fifty patients (12%) were classified as perfect reporters, 98 (23.6%) as overreporters, 2 (0.5%) as underreporters, and 266 (63.9%) as others. In multivariable analysis, the following variables were associated with the overreporter phenotype: non-white race: Hispanic, odds ratio (OR), 2.4, P = .02; Asian, OR, 3.1, P = .02; African American, P < .001; paternal education less than college (OR, 1.4, P = .05); and 6MP nonadherence (OR, 9.4, P < .001). Self-report of 6MP intake in childhood ALL overestimates true intake, particularly in nonadherent patients, and should be used with caution.

Parent proxy assessment of sibling quality of life following pediatric hematopoietic cell transplantation.

BACKGROUND: When a child undergoes hematopoietic cell transplantation (HCT), the impact extends to the entire family, including siblings. Assessment of the quality of life (QoL) of siblings is challenged by their general lack of availability for regular assessment by clinical providers. Thus, the use of parent proxy reporting may be useful. Our aim was to describe the QoL of siblings of HCT survivors, as reported by their parents, as well as to identify parent and family factors associated with lower sibling QoL. METHODS: A cross-sectional study was utilized to assess parent-reported QoL of the HCT recipient's sibling (Short Form (SF)-10 Health Survey for Children and the Pediatric Symptom Checklist (PSC)-17). Parent QoL was assessed using the SF-12. Multivariable linear regression was used to explore hypothesized predictors of sibling QoL, including parent QoL, family impact/function (Impact on Family Scale, Family Adaptability and Cohesion Evaluation Scales, IV, and a question asking about financial problems) while adjusting for demographic and HCT characteristics. RESULTS: Ninety-seven siblings (55% males) with a mean age of 12 years (standard deviation [SD] 4 years) were assessed, representing HCT survivors, who were an average of 5 years (SD 4 years) post-HCT. Neither sibling psychosocial (mean 49.84, SD 10.70, p = 0.87) nor physical health scores (mean 51.54, SD 8.42, p = 0.08) differed from norms. Parent proxies reported behavioral/emotional problems (PSC-17 total score > 15) in 24% of siblings. While parental ratings of their own physical health (SF-12 were higher than norms (mean 53.04, SD 8.17, p = 0.0005), mental health scores were lower (mean 45.48, SD 10.45, p < 0.0001). In multivariable analysis, lower parent emotional functioning and adverse family function were associated with lower sibling QoL, as reported by parents. CONCLUSIONS: While proxy-reported QoL of siblings did not differ significantly from normative data, both parent QoL and family function were associated with sibling QoL. Future research is needed to understand how siblings themselves perceive their QoL following HCT.

Financial hardship and neighborhood socioeconomic disadvantage in long-term childhood cancer survivors.

BACKGROUND: Long-term survivors of childhood cancer face elevated risk for financial hardship. We evaluate whether childhood cancer survivors live in areas of greater deprivation and the association with self-reported financial hardships. METHODS: We performed a cross-sectional analysis of data from the Childhood Cancer Survivor Study between 1970 and 1999 and self-reported financial information from 2017 to 2019. We measured neighborhood deprivation with the Area Deprivation Index (ADI) based on current zip code. Financial hardship was measured with validated surveys that captured behavioral, material and financial sacrifice, and psychological hardship. Bivariate analyses described neighborhood differences between survivors and siblings. Generalized linear models estimated effect sizes between ADI and financial hardship adjusting for clinical factors and personal socioeconomic status. RESULTS: Analysis was restricted to 3475 long-term childhood cancer survivors and 923 sibling controls. Median ages at time of evaluation was 39 years (interquartile range [IQR] = 33-46 years and 47 years (IQR = 39-59 years), respectively. Survivors resided in areas with greater deprivation (ADI ≥ 50: 38.7% survivors vs 31.8% siblings; P < .001). One quintile increases in deprivation were associated with small increases in behavioral (second quintile, P = .017) and psychological financial hardship (second quintile, P = .009; third quintile, P = .014). Lower psychological financial hardship was associated with individual factors including greater household income (≥$60 000 income, P < .001) and being single (P = .048). CONCLUSIONS: Childhood cancer survivors were more likely to live in areas with socioeconomic deprivation. Neighborhood-level disadvantage and personal socioeconomic circumstances should be evaluated when trying to assist childhood cancer survivors with financial hardships.

Improving Cancer Survivorship Care for Latino Adolescent, Young Adult Survivors through Community-Partnered Participatory Research.

Background: Minority adolescent and young adult (AYA) cancer survivors experience disparities in receipt of survivorship care. Objective: This study describes the infrastructure of a community-partnered participatory research (CPPR) project between a community-based organization and a National Cancer Institute (NCI)-designated cancer center to develop culturally-tailored interventions to improve Latino AYA cancer survivor knowledge regarding their need for survivorship care. Methods: Research team participants included the community organization and NCI cancer center directors, a research coordinator, a community liaison, and cross-training program interns. Through use of Jones's theoretical framework, additional stakeholders from academic and community settings were identified and invited to participate in the research team. A process evaluation and qualitative interviews were conducted to assess equal partnership between community and academic stakeholders and determine if the infrastructure followed the five core principles of CPPR. A grounded theory approach was used to analyze qualitative data. Conclusions: CPPR between an NCI-designated cancer center and a community-based organization is a new research model for conducting minority AYA cancer survivor outreach. Open communication was critical in engaging the Latino community to discuss their survivorship needs. Community stakeholders were key to infrastructure success through fostering a cohesive partnership with and acting as the voice of the Latino community. Implementing a cross-training program promoted continued engagement of community members with academic partners. Proper infrastructure development is critical to building successful research partnerships in order to develop culturally-tailored interventions to improve survivorship care knowledge.

Understanding the Workplace Interactions of Young Adult Cancer Survivors With Occupational and Environmental Health Professionals.

Work provides satisfaction and stability to young adult cancer survivors. However, progressive health changes because of cancer may compromise safety and diminish functional ability. The purpose of this study was to describe long-term young adult cancer survivors' work experiences and describe their interactions with occupational and environmental health professionals (OEHPs) within the workplace. Cancer survivors were recruited from the Los Angeles County Cancer Surveillance Program. Professional organizations provided access to OEHPs. Constructivist grounded theory guided individual semi-structured interviews during data collection and analysis. Processes of interaction between cancer survivors and OEHPs found to influence work included revealing the survivor-self, sustaining work ability, gatekeeping (employment opportunities, return to work), and accessing support. OEHPs appeared to facilitate survivors' work ability in the long term if services were available, services were known to survivors, and survivors revealed needs. Educating workers about OEHP services throughout cancer experiences and survivorship could ultimately improve interactivity and provide supportive work environments.

The use of mobile technology and peer navigation to promote adolescent and young adult (AYA) cancer survivorship care: results of a randomized controlled trial.

PURPOSE: Adolescent and young adult (AYA) cancer survivors experience unique barriers that compromise receipt of survivorship care; therefore, development of innovative educational interventions to improve rates of AYA survivorship care is needed. The efficacy of text-messaging and peer navigation interventions was compared to standard-of-care survivorship educational materials to increase AYAs' (1) late effects knowledge and (2) knowledge, attitudes, and self-efficacy towards seeking survivor-focused care. METHODS: This was a three-armed, prospective, randomized controlled trial with one control group and two intervention groups. The control group received current standard-of-care educational materials. One intervention group participated in a text-messaging program, and the second participated in a peer navigator program. Participants completed pre- and post-intervention questionnaires. Study outcome variables were quantified using Fisher exact tests, two-sample t tests, exact McNemar tests, conditional logistic regression models, and analysis of covariance. RESULTS: Seventy-one survivors completed the study (control n = 24; text-messaging n = 23; peer navigation n = 24). Late effects knowledge was high at baseline for all groups. The text-messaging group had increased survivorship care knowledge compared to the control group (p < 0.05); the peer navigation group had increased survivorship care self-efficacy compared to the control group; p < 0.05. Both intervention groups showed increased attitudes towards seeking survivor-focused care compared to the control group (text-messaging p < 0.05; peer navigation p < 0.05). CONCLUSIONS: Each intervention demonstrated significant benefits compared to the control group. IMPLICATIONS FOR CANCER SURVIVORS: Given the preliminary effectiveness of both interventions, each can potentially be used in the future by AYA cancer survivors to educate and empower them to obtain needed survivorship care.

Creation and evaluation of a cancer survivorship curriculum for pediatric resident physicians.

PURPOSE: There is a paucity of formal clinician education concerning cancer survivorship care, which produces care barriers and poorer outcomes for survivors of childhood cancer. To address this, we implemented a curriculum in childhood cancer survivorship care for pediatric residents at the University of California, Los Angeles (UCLA). We examined the efficacy of this curriculum following program completion. METHODS: A case-based curriculum was created and integrated within existing educational structures using Kern's model. We utilized the retrospective pre-posttest method to evaluate participating residents' knowledge, clinical skills, and attitudes towards cancer survivorship topics before and after receiving the curriculum. Pre-posttest items were compared using paired t tests and one-sided binomial tests. We analyzed free-response question items for major themes using constant comparative methods. RESULTS: Thirty-four residents completed the curriculum and its evaluation. Each assessment item significantly increased from pre- to post-curriculum; p < 0.05. Greater than 40% of residents improved in all but one assessment item post-curriculum; p < 0.05. Residents reported the curriculum enhanced their pediatric knowledge base (M = 3.24; SD = 0.65) and would recommend it to other residency programs; M = 3.24; SD = 0.69. Major themes included residents' request for additional oncofertility information, training in counseling survivors, and cancer survivorship training opportunities. CONCLUSIONS: A cancer survivorship curriculum can successfully increase trainees' knowledge, clinical skills, and comfort in discussing topics relevant to survivorship care. IMPLICATIONS FOR CANCER SURVIVORS: With increasing numbers of childhood cancer survivors living into adulthood, residents will likely treat this population regardless of intended career path. This curriculum represents one method to deliver formal cancer survivorship training.

Nonadherence to oral mercaptopurine and risk of relapse in Hispanic and non-Hispanic white children with acute lymphoblastic leukemia: a report from the children's oncology group.

PURPOSE: Systemic exposure to mercaptopurine (MP) is critical for durable remissions in children with acute lymphoblastic leukemia (ALL). Nonadherence to oral MP could increase relapse risk and also contribute to inferior outcome in Hispanics. This study identified determinants of adherence and described impact of adherence on relapse, both overall and by ethnicity. PATIENTS AND METHODS: A total of 327 children with ALL (169 Hispanic; 158 non-Hispanic white) participated. Medication event-monitoring system caps recorded date and time of MP bottle openings. Adherence rate, calculated monthly, was defined as ratio of days of MP bottle opening to days when MP was prescribed. RESULTS: After 53,394 person-days of monitoring, adherence declined from 94.7% (month 1) to 90.2% (month 6; P < .001). Mean adherence over 6 months was significantly lower among Hispanics (88.4% v 94.8%; P < .001), patients age ≥ 12 years (85.8% v 93.1%; P < .001), and patients from single-mother households (80.6% v 93.1%; P = .001). A progressive increase in relapse was observed with decreasing adherence (reference: adherence ≥ 95%; 94.9% to 90%: hazard ratio [HR], 4.1; 95% CI,1.2 to 13.5; P = .02; 89.9% to 85%: HR, 4.0; 95% CI, 1.0 to 15.5; P = .04; < 85%: HR. 5.7; 95% CI, 1.9 to 16.8; P = .002). Cumulative incidence of relapse (± standard deviation) was higher among Hispanics (16.5% ± 4.0% v 6.3% ± 2.2%; P = .02). Association between Hispanic ethnicity and relapse (HR, 2.6; 95% CI, 1.1 to 6.1; P = .02) became nonsignificant (HR, 1.8; 95% CI, 0.6 to 5.2; P = .26) after adjusting for adherence and socioeconomic status. At adherence rates ≥ 90%, Hispanics continued to demonstrate higher relapse, whereas at rates < 90%, relapse risk was comparable to that of non-Hispanic whites. CONCLUSION: Lower adherence to oral MP increases relapse risk. Ethnic difference in relapse risk differs by level of adherence-an observation currently under investigation.

Health behaviors, medical care, and interventions to promote healthy living in the Childhood Cancer Survivor Study cohort.

Childhood cancer survivors are at risk for medical and psychosocial late effects as a result of their cancer and its therapy. Promotion of healthy lifestyle behaviors and provision of regular risk-based medical care and surveillance may modify the evolution of these late effects. This manuscript summarizes publications from the Childhood Cancer Survivor Study (CCSS) that have examined health behaviors, risk-based health care, and interventions to promote healthy lifestyle practices. Long-term survivors use tobacco and alcohol and have inactive lifestyles at higher rates than is ideal given their increased risk of cardiac, pulmonary, and metabolic late effects. Nearly 90% of survivors report receiving some form of medical care. However, only 18% report medical visits related to their prior cancer that include discussion or ordering of screening tests or counseling on how to reduce the specific risks arising from their cancer. One low-cost, peer-driven intervention trial has been successful in improving smoking cessation within the CCSS cohort. On the basis of data from CCSS investigations, several trials to promote improved medical surveillance among high-risk groups within the cohort are underway. Despite their long-term risks, many survivors of childhood cancer engage in risky health behaviors and do not receive adequate risk-based medical care.

Health-related quality of life for Latino survivors of childhood cancer.

This study compared the similarities and differences in health-related quality of life (HRQOL) among Latino and non-Latino adult long-term survivors of childhood cancer using the qualitative methodologies of focus groups and individual semistructured telephone interviews. The study also compared the sample's HRQOL, as measured by the Short-form 12 to the general, healthy United States population normative data. The data suggest that Latino survivors are reporting good HRQOL similar to the non-Latinos. The findings suggest that the paradigm of negative consequences of cure should be expanded to one, which also includes the positive impact of cure for ethnically diverse populations of childhood cancer survivors.

Prognostic implications of t(10;11) translocations in childhood acute myelogenous leukemia: a report from the Children's Cancer Group.

PURPOSE: This was a retrospective analysis of outcome based on cytogenetics for a Children's Cancer Group phase 3 trial of acute myelogenous leukemia (AML) (CCG-2891). PATIENTS AND METHODS: A retrospective analysis of outcome for newly diagnosed children with AML and myelodysplastic syndrome (MDS) was performed using data collected from CCG-2891. The authors identified 11 patients whose blasts carried t(10;11) reciprocal translocations or other complex rearrangements involving 10p and 11q among 470 eligible patients entered with acceptable, centrally reviewed cytogenetics. A bone marrow specimen was used for each case of cytogenetic analysis in which 20 banded (either G-banded or Q-banded) metaphases were completed on each subject. All 11 patients had characteristic monocytoid morphology (M4 or M5) and tended to be young (0.1-7.9 years; median 0.9 years). RESULTS: All 11 patients entered remission, but remissions tended to be short; 9 patients relapsed within 12 months (median 4 months). The relapse rate of 82% was significantly higher for this group of patients compared with 46% for the group at large. The relapse rate for this group of patients having t(10;11) reciprocal translocations or other complex rearrangements involving 10p and 11q was also significantly higher compared with subjects with other 11q23 chromosomal abnormalities. The CNS relapse rate of 55% was higher for this group of patients compared with 3% for all other patients in the study. The CNS relapse rate was higher for the subjects who had t(10;11) reciprocal translocations or other complex rearrangements involving 10p and 11q compared with subjects with all other chromosome 11 abnormalities. Three children survived, two in second remissions (4.7 and 6.3 years after relapse) and one in first remission (7.0 years after diagnosis). Survival and event-free survival for the patients with t(10;11) reciprocal translocations or other complex rearrangements involving 10p and 11q was 27 +/- 27% and 9 +/- 17% at 6 years, respectively, and was not statistically different from all other patients with cytogenetics. Similarly, the survival and event-free survival for the patients with t(10;11) translocations and other rearrangements of chromosomes 10 and 11 was 27 +/- 27% and 9 +/- 17% at 6 years, respectively, and was not statistically different from the 11q23 group of subjects. CONCLUSIONS: Further research is needed to determine the various changes that are occurring at the molecular level for patients with t(10;11) translocations and other rearrangements of chromosomes 10 and 11 to gain insight into the mechanisms causing this clinical phenotype associated with a poor prognosis.