More than 3000 adolescents in the United States die annually from the effects of chronic illness. Providing appropriate end-of-life care for these patients is particularly challenging because of ...several developmental, ethical, and legal considerations relevant to this age group. Developmental issues relate to the ways in which life-threatening illness alters the normal physical and psychological changes associated with adolescence, including attainment of independence, social skills, peer acceptance, and a healthy self-image. Ethical and legal issues arise from the fact that many terminally ill adolescents <18 years of age lack ordinary legal authority to make binding medical decisions (including discontinuation of their treatment), yet they meet functional criteria for having the competence to do so. In such situations, a broad medical, ethical, and legal consensus supports giving decisional authority to the minor patient. Even when full decisional authority is not appropriate, strong moral arguments exist for taking serious account of the young adolescent's treatment preferences. In supporting the dying adolescent, an atmosphere promoting excellent communication and sound decision-making should be fostered as early as possible during preterminal care and maintained thereafter. Once palliative-care strategies become the clinical focus, psychosocial support sensitive to the adolescent's developmental stage must be provided. Using these principles, clinicians can play a crucial role in helping the adolescent, in the face of death, to experience richness of life and the dignity of self-determination.
Despite an aggregate 5-year survival of 85%, many adolescents and young adults (AYAs, 15–39 years old) treated for cancer die prematurely decades later. To develop a more complete understanding of ...this problem, particularly the role of specific subsequent malignant neoplasms (SMNs), we used the SEER-9 registry to analyze causes of death (COD: Primary cancer, SMN, non-malignant conditions) among 162,317 AYAs diagnosed with first cancer between 1975–2012 and surviving 5 or more years. Cumulative mortality, attributable mortality, standardized mortality ratios (SMRs), and adjusted hazard ratios were determined for each cancer site and COD. At 30 years, cumulative mortality due to primary cancer was matched by that due to all other causes (12.8% 95% CI 12.5%, 13.0% for primary cancer versus 12.8% 12.5%, 13.1% for all other causes combined) in the combined cohort, and was overtaken by non-malignant conditions in Hodgkin lymphoma, testicular, cervical/uterine, and thyroid cancers. Overall, SMNs accounted for 20% of malignant deaths, the most common being lung/bronchus (25.6%), colorectal/liver/biliary/pancreas (19.1%), and breast (10.2%). For non-malignant conditions, excess risk was noted overall (SMR 1.37, 95% CI 1.34, 1.40) and for infectious (1.97 1.85, 2.10), renal (1.85 1.60, 2.13), cardio/cerebrovascular (1.38 1.33, 1.43), and suicide (1.15 1.04, 1.27). Racial minorities were at significantly higher risk across all COD. Safer therapy, longitudinal monitoring, and primary/secondary preventive strategies are needed to reduce late mortality in this vulnerable population.
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IZUM, KILJ, NUK, PILJ, PNG, SAZU, UL, UM, UPUK
Background
Skin cancer is the most common secondary malignancy among young adult childhood cancer survivors (YA‐CCS). Skin examination to detect skin cancer early (including melanoma as well as basal ...or squamous cell skin cancers), both physician‐based (PSE) and self‐skin exam (SSE), is recommended, particularly for radiotherapy‐exposed YA‐CCS who are at high risk of developing skin cancer.
Methods
Awareness and prevalence of skin examination and demographic, clinical, and healthcare correlates were examined in a population‐based sample of YA‐CCS with diverse cancer types excluding melanoma. Descriptive frequencies and logistic regression models were conducted using sample weights to correct for non‐response bias with PSE, SSE and adherence to both as outcomes.
Results
The sample comprised 1064 participants with 53% Latino. Eight percent of participants were aware of the need for skin examination; 9% reported receipt of PSE within past 2 years; 35% reported regular SSE; and 6% were adherent to both. Among the radiotherapy‐treated, 10% were aware of the need for skin examination, 10% reported recent PSE; 38% reported regular SSE; and 8% were adherent to both. Healthcare and clinical factors including healthcare self‐efficacy, engagement in cancer‐related follow‐up care, greater treatment intensity and greater number of treatment‐related late effects were positively associated with PSE and SSE. Latino YA‐CCS were less likely to engage in PSE and SSE.
Conclusion(s)
Adherence to recommended screening for skin cancer was low in this at‐risk population, notably for YA‐CCS exposed to radiotherapy. The development of effective strategies to expand skin cancer screening is needed in this at‐risk population.
Despite the high risk of skin cancer as a second malignancy among young adult survivors of childhood cancer, in this study extremely low rates of skin screening (both physician‐based and skin self‐examination) were found in a diverse population‐based sample.
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FZAB, GIS, IJS, KILJ, NLZOH, NUK, OILJ, SBCE, SBMB, UL, UM, UPUK
Obesity is associated with poorer event-free survival (EFS) in pediatric acute lymphoblastic leukemia (ALL). Persistent minimal residual disease (MRD) in the bone marrow as measured by ...multidimensional flow cytometry (MDF) is a key early prognostic indicator and is strongly associated with EFS. We therefore hypothesized that obesity during induction would be associated with positive end-of-induction MRD (≥0.01%). We analyzed MDF of end-induction bone marrow samples from a historical cohort of 198 children newly diagnosed with B-precursor ALL (BP-ALL) and treated with Children’s Oncology Group induction regimens. We assessed the influence of body mass index on risk for positive end-induction MRD in the bone marrow. In our cohort of BP-ALL, 30 children (15.2%) were overweight and 41 (20.7%) were obese at diagnosis. Independent of established predictors of treatment response, obesity during induction was associated with significantly greater risk for persistent MRD (odds ratio, 2.57; 95% confidence interval, 1.19 to 5.54; P = .016). Obesity and overweight were associated with poorer EFS irrespective of end-induction MRD (P = .012). Obese children with newly diagnosed BP-ALL are at increased risk for positive end-induction MRD and poorer EFS.
•Obesity is associated with increased risk for persistent minimal residual disease after induction therapy for pediatric BP-ALL.
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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NLZOH, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UILJ, UL, UM, UPCLJ, UPUK, ZAGLJ, ZRSKP
Objective Previous work in pediatric oncology has found that clinicians and parents tend to under-report the frequency and severity of treatment-related symptoms compared to child self-report. As ...such, there is a need to identify high-quality self-report instruments to be used in pediatrie oncology research studies. This study's objective was to conduct a systematic literature review of existing English language instruments used to measure self-reported symptoms in children and adolescents undergoing cancer treatment. Methods A comprehensive literature search was conducted in MEDLINE/PubMed, EMBASE, CINAHL, and PsycINFO to identify relevant articles published through November 10, 2016. Using pre-specified inclusion/exclusion criteria, six trained reviewers carefully screened abstracts and full-text articles for eligibility. Results There were 7738 non-duplicate articles identified in the literature search. Forty articles met our eligibility criteria, and within these articles, there were 38 self-report English symptom instruments. Most studies evaluated only cross-sectional psychometric properties, such as reliability or validity. Ten studies assessed an instrument's responsiveness or ability to detect changes in symptoms over time. Eight instruments met our criteria for use in future longitudinal pediatrie oncology studies. Conclusions This systematic review aids pediatrie oncology researchers in identifying and selecting appropriate symptom measures with strong psychometric evidence for their studies. Enhancing the child's voice in pediatrie oncology research studies allows us to better understand the impact of cancer and its treatment on the lives of children.
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BFBNIB, CEKLJ, DOBA, EMUNI, FIS, FZAB, GEOZS, GIS, IJS, IMTLJ, INZLJ, IZUM, KILJ, KISLJ, MFDPS, NLZOH, NMLJ, NUK, OBVAL, OILJ, PILJ, PNG, SAZU, SBCE, SBJE, SBMB, SBNM, UILJ, UKNU, UL, UM, UPUK, VKSCE, VSZLJ, ZAGLJ, ZRSKP
Obesity is a known modifiable risk factor associated with adverse outcomes in children with cancer. We sought to determine whether obesity during childhood cancer treatment increases risk for second ...malignant neoplasms (SMN).
In this case-control study, cases (with SMN) and controls (with a single-primary cancer) were selected from the California Cancer Registry who had primary cancer diagnosed <21 years treated at Children's Hospital Los Angeles between 1988 and 2014. Controls were matched 3:1 to cases at the registry level by clinical factors. Medical records were abstracted for cancer treatment exposures, cancer predisposition syndrome, body mass index (BMI), BMI Z-score, and BMI category at diagnosis and end of therapy (EOT).
A total of 59 cases and 130 controls were included. Median age at primary cancer diagnosis was 6 years, 64.5% were male, median time from primary cancer to SMN was 7.5 years, and 31.7% were obese or overweight. In matched multivariable analyses, there were elevated but nonsignificant associations between SMN and higher BMI Z-score at diagnosis OR 1.27 (0.99-1.63) and higher BMI categories at diagnosis adjusted OR (aOR) overweight, 1.25 (0.55-2.52); aOR obese, 2.51 (1.00-6.29). There was a significantly increased risk for SMN among patients who were obese at both diagnosis and EOT aOR, 4.44 (1.37-14.34).
This study suggests that obesity during childhood cancer treatment may be associated with increased risk for SMNs, particularly among those obese throughout therapy.
Additional studies to confirm these findings and to develop interventions have the potential to impact SMN development in children with cancer.
Younger adolescents and young adults (AYA) may receive care from either adult or pediatric oncologists. We explored patterns of care in this population and whether survival is associated with ...provider type.
Utilizing the California Cancer Registry, we examined a cohort of 9,993 AYAs diagnosed with cancer aged 15 to 24 years from 1999 to 2008. Provider type (adult/pediatric) was determined by individual physician identifiers. For provider type, multivariable logistic regression models were adjusted for age, sex, race/ethnicity, socioeconomic status, diagnosis, and stage. For observed survival, Cox proportional hazard models were additionally adjusted for provider type. ORs and HR with 95% confidence intervals (95% CI) were determined.
Most patients saw adult providers (87.3% overall; 72.7% aged 15-19 years). Patients with acute leukemia, sarcoma, and central nervous system (CNS) malignancies more often saw pediatric providers OR (95% CI) adult versus pediatric 0.48 (0.39-0.59), 0.74 (0.60-0.92), 0.76 (0.60-0.96), respectively; those with germ cell tumors and other cancers, including carcinomas, more often saw adult providers 2.26 (1.72-2.98), 1.79 (1.41-2.27), respectively. In aggregate and for most cancers individually, there was no survival difference by provider type overall HR (95% CI) 1.00 (0.86-1.18). Higher survival was associated with pediatric providers for CNS malignancies 1.63 (1.12-2.37) and rhabdomyosarcoma 2.22 (1.03-4.76), and with adult providers for non-Hodgkin lymphoma 0.61 (0.39-0.96).
Most AYAs 15 to 24 years old are treated by medical oncologists. In general, survival was not associated with provider type.
Current patterns of care for this population support increased collaboration between medical and pediatric oncology, including joint clinical trials.
Introduction: Survivors of colorectal cancer (CRC) are at risk for late effects of therapy and recurrence of cancer. With recurrence rates ranging between 30−40%, follow-up care is needed for both ...early detection and management of late effects. Cancer care delivery for CRC patients was significantly disrupted by the SARS-CoV-2 pandemic, with decreases of 40% in such services in the United States between April 2020 and 2019. Survivors were left with fewer options for care, potentially causing increases in emergency room (ER) utilization. Methods: This cross-sectional study examined the patterns of ER utilization during the SARS-CoV-2 pandemic among young adult CRC survivors and assessed the relationship between self-reported care satisfaction and ER use. Eligible participants were colon or rectal cancer survivors diagnosed between 18−39 years of age, 6−36 months from diagnosis/relapse, English speaking and residing in the United States. Multivariable logistic regression assessed the association between patient care satisfaction and ER utilization, adjusting for pandemic factors. Covariates were chosen by significance of p < 0.1 at the univariate level and perceived clinical significance. Results: The overall sample (N = 196) had mean age (SD) 32.1 (4.5); 59% were male. Tumor location was colon or rectal in 42% and 57%, respectively, and the majority (56%) were diagnosed with stage 2 disease; 42.6% reported relapsed disease, and 20% had an ostomy. Most survivors (72.5%) had between 1−4 visits to an ER in the last 12 months and were categorized as normal utilizers. Approximately 24.7% of the sample had greater than 4 visits to the ER in the last 12 months and were categorized as super-utilizers. CRC survivors that reported a delay in their follow-up care as a result of the pandemic were two times (OR: 2.05, 95% CI 0.99, 4.24) more likely to be super-utilizers of the ER. Higher self-reported satisfaction with care was associated with a 13.7% lower likelihood of being a super-utilizer (OR: 0.86, 95%CI: −0.68, 1.09). Conclusions: This study found strong associations between delays in care, self-reported care satisfaction, and being a super-utilizer of the ER during the pandemic among young adult CRC survivors off treatment. Increasing patient satisfaction and minimizing care interruptions amongst this vulnerable population may aid in mitigating over-utilization in the ER during an ongoing pandemic.
Background
Survivors of childhood acute lymphoblastic leukemia and lymphoma (ALL/LL) are at risk for cognitive dysfunction, but little is known about its relationship with language proficiency and ...sociodemographics.
Procedure
In this cross‐sectional cohort study of Latino survivors of childhood ALL/LL, English and Spanish language proficiency and cognitive and academic functioning were measured and their associations determined using paired t‐tests, Pearson correlations, and linear regressions.
Results
Participants (N = 57; 50.9% female) had mean ages (years ± SD) of 4.3 ± 2.6 at diagnosis and 10.6 ± 2.9 at testing (range 6–16); mean time post treatment was 3.7 ± 2.6 years. The majority (73.7%) had low socioeconomic status (SES). Most (78.8%) were dual‐language learners in English and Spanish. English proficiency was graded as limited‐to‐fluent and was significantly higher than Spanish (p < .001). Higher SES was correlated with higher English proficiency (r = 0.31, p = .020). Males had higher Spanish proficiency (r = −0.32, p = .034). Controlling for SES and sex, English proficiency accounted for 43% of cognitive functioning variance (F = 14.86, p < .001), 55% of reading comprehension variance (F = 22.14, p < .001), and 21% of mathematics variance (F = 5.76, p = .002).
Conclusions
Low language proficiency correlated with SES but was independently associated with lower cognitive and academic functioning. Research and surveillance for neurocognitive late effects in Latino ALL/LL survivors should incorporate measures of language proficiency and SES to account for their effects on cognitive and academic functioning.
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BFBNIB, FZAB, GIS, IJS, KILJ, NLZOH, NUK, OILJ, SBCE, SBMB, UL, UM, UPUK
Background
Despite improvements in survival rates, cancer treatments have significant side effects that affect the quality of life of children and their families. When an ill child cannot self‐report ...symptoms (eg, he or she is too ill), caregiver (parent) reporting becomes critical. This study evaluates the validity and reliability of the caregiver‐reported Pediatric Patient‐Reported Outcomes version of the Common Terminology Criteria for Adverse Events (Ped‐PRO‐CTCAE Caregiver) measure.
Methods
A diverse sample of caregivers with children receiving treatment at 9 oncology centers completed the Ped‐PRO‐CTCAE Caregiver measure, the Patient‐Reported Outcomes Measurement Information System® (PROMIS®) Parent Proxy measures, the Lansky Play‐Performance Scale (PPS), medication use questions, and Global Impressions of Change (GIC). Construct validity (including convergent, discriminant, and known groups validity and responsiveness over time) and reliability (stability) were examined.
Results
A majority of the 473 caregivers were female (85%), non‐Hispanic White (61%), and married (75%). Symptoms assessed with the Ped‐PRO‐CTCAE Caregiver and PROMIS Parent Proxy measures were strongly correlated (e.g., r for pain = 0.78; r for fatigue = 0.78; and r for depression = 0.83). Most of the Ped‐PRO‐CTCAE Caregiver item mean scores distinguished among PPS function levels and between children who did take medications for symptom control and children who did not. Changes in Ped‐PRO‐CTCAE Caregiver item mean scores were responsive to GIC over time. Test‐retest evaluation found moderate to high agreement (57.8%‐93.3%) over time.
Conclusions
This study found strong evidence for the convergent and discriminant validity, known groups validity, responsiveness, and stability of the Ped‐PRO‐CTCAE Caregiver measure in a large and diverse sample of caregivers. The caregiver perspective provides a valuable and unique insight into the experiences of children and adolescents undergoing cancer treatment.
Lay Summary
Despite advances in cancer treatments, children and adolescents continue to suffer from treatment side effects, including pain, nausea, fatigue, and emotional distress, that can adversely affect quality of life for children and their families.
Although it is best for children to report how they are feeling, there are times when a child may be too young or too ill to self‐report.
This study provides critical evidence for a new type of questionnaire that allows the caregiver or parent to report accurately what the child is experiencing. This measure can be used to improve adverse event reporting and child cancer care.
This study provides evidence for the validity and reliability of the caregiver‐reported Pediatric Patient‐Reported Outcomes version of the Common Terminology Criteria for Adverse Events measure for capturing symptomatic adverse events experienced by children undergoing cancer treatment. Especially during times when a child may be too ill or too young or does not prefer to report his or her symptoms, this measure allows the caregiver to communicate to the clinicians those symptoms that are affecting the child's life. The goal for this measure is to help to improve adverse event reporting and cancer care for children.
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BFBNIB, FZAB, GIS, IJS, KILJ, NLZOH, NUK, OILJ, SBCE, SBMB, UL, UM, UPUK
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