Global assessment of cancer incidence and survival in adolescents and young adults

In high‐income countries, cancer remains the commonest cause of disease‐related death in adolescents and young adults (AYAs) despite survival improvements. With more than 1,000,000 new diagnoses of cancer in AYAs annually worldwide, and their number of life‐years affected by cancer being greatest of all ages, the global burden of cancer in AYAs exceeds that in all other ages. In low‐ and middle‐income countries, where the great majority of the world's 3 billion AYAs reside, the needs of those with cancer have been identified and demand attention. Unique to the age group but universal, the psychosocial challenges they face are the utmost across life's spectrum. This lead‐off article of a new series in Pediatric Blood and Cancer on AYA oncology attempts to assess the global status of this emerging discipline. The review includes the changing incidence and survival of the common cancers in AYAs—there is no other age group with a similar array of malignancies—and the specific challenges to quality and quantity of life that compromise their lives.     

Psychosexual functioning in cancer survivorship: What the pediatric oncologist needs to know

Sexual health may be disrupted in adolescents and young adults (AYAs) both during and after cancer treatment, irrespective of whether they are diagnosed in childhood, adolescence, or young adulthood. Unfortunately, oncology providers often underestimate the relevance of psychosexual issues for AYAs and underprioritize sexual health throughout treatment and survivorship. The purpose of this narrative review is to provide information on (a) the etiology of psychosexual dysfunction in childhood, adolescent, and young adult cancer patients and young adult survivors of childhood cancer; (b) strategies for communicating and evaluating potential sexual health issues of AYA patients/survivors; and (c) guidance for the practicing pediatric oncologist on how to address sexual health concerns with patients.     

Low Caregiver Health Literacy Is Associated With Higher Pediatric Emergency Department Use and Nonurgent Visits

ObjectiveWe sought to determine the association between low caregiver health literacy and child emergency department (ED) use, both the number and urgency of ED visits.MethodsThis year long cross-sectional study utilized the Newest Vital Sign questionnaire to measure the health literacy of caregivers accompanying children to a pediatric ED. Prior ED visits were extracted from a regional database. ED visit urgency was classified by resources utilized during the index ED visit. Regression analyses were used to model 2 outcomes—prior ED visits and ED visit urgency—stratified by chronic illness. Analyses were weighted by triage level.ResultsOverall, 503 caregivers completed the study; 55% demonstrated low health literacy. Children of caregivers with low health literacy had more prior ED visits (adjusted incidence rate ratio 1.5; 95% confidence interval 1.2, 1.8) and increased odds of a nonurgent index ED visit (adjusted odds ratio 2.4; 95% confidence interval 1.3, 4.4). Among children without chronic illness, low caregiver health literacy was associated with an increased proportion of nonurgent index ED visits (48% vs 22%; adjusted odds ratio 3.2; 1.8, 5.7).ConclusionsOver half of caregivers presenting with their children to the ED have low health literacy. Low caregiver health literacy is an independent predictor of higher ED use and use of the ED for nonurgent conditions. In children without a chronic illness, low health literate caregivers had more than 3 times greater odds of presenting for a nonurgent condition than those with adequate health literacy.     

Caregiver Low Health Literacy and Nonurgent Use of the Pediatric Emergency Department for Febrile Illness

ObjectiveTo examine the association between caregiver health literacy and the likelihood of a nonurgent emergency department (ED) visit in children presenting for fever.MethodsThis cross-sectional study used the Newest Vital Sign to assess the health literacy of caregivers accompanying children with fever to the ED. Visit urgency was determined by resources utilized during the ED visit. Findings were stratified by race and child age. Chi-square and logistic regression analysis controlling for race were conducted to determine the association between low health literacy and ED visit urgency.ResultsA total of 299 caregivers completed study materials. Thirty-nine percent of ED visits for fever were nonurgent, and 63% of caregivers had low health literacy. Low health literacy was associated with a higher proportion of nonurgent ED visits for fever (44% vs 31%, odds ratio 1.8, 95% confidence interval [CI] 1.1, 2.9). Low health literacy was associated with higher odds of a nonurgent visit in white and Hispanic caregivers but not in black caregivers. In regression analysis, children ≥2 years old had higher odds of a nonurgent visit if caregivers had low health literacy (adjusted odds ratio 2.0; 95% CI 1.1, 4.1); this relationship did not hold for children <2 years old (adjusted odds ratio 0.8; 95% CI 0.4, 1.8).ConclusionsNearly two-thirds of caregivers with their child in the ED for fever have low health literacy. Caregiver low health literacy is associated with nonurgent ED utilization for fever in children over 2 years of age. Future interventions could target health literacy skills regarding fever in caregivers of children ≥2 years.     

Health literacy and sources of health information for caregivers of urban children with asthma

Little is known about the resources used by urban caregivers of children with asthma to obtain health information. The authors analyzed data for 304 families of children with persistent asthma to describe (1) sources of health information, (2) access and use of Internet resources, and (3) the association between the caregiver's health literacy (HL) and use of health information sources. Overall, 37% of caregivers had limited HL. Most families received health information from a health care professional (94%), written sources (51%), family/friends (42%), non-print media (34%), and the Internet (30%). Less than half of caregivers had access to the Internet at home, but 73% reported Internet use in the past year. Caregivers with adequate HL were more likely to obtain information from multiple sources and to use and have access to the Internet. The results suggest that HL is associated with where caregivers obtain health information from for their children and their use of the Internet.     

Impact of socioeconomic markers on parents' retention of pediatric oncology home care education: A pilot study

Little is known about the extent to which parents retain the education on how to manage home medical emergencies. We sought to describe retention of pediatric oncology home care education (POHCE) in a cohort of 24 parents of newly diagnosed children with cancer and investigate sociodemographic disparities in this retention. We measured retention using a vignette‐based survey instrument. The mean score was 4 (range 0–6, SD = 1.6) and parents with high school only education and those with limited cancer health literacy scored lowest (2.5 and 2.8, respectively). Future POHCE interventions can focus on parents’ literacy and education levels as predictors to tailor alternative education strategies.     

Future health of AYA survivors

Adolescent and young adult (AYA) oncology patients (ages 15–39) have been identified as a group with healthcare disparities including gaps and challenges in diagnosis, access to care, research, clinical trial participation, and cure rates. Like other patient groups with cancer or other chronic illnesses, disparities can lead to poor future health and outcomes, which is a well‐recognized concern within the AYA population. Cancer is the leading disease‐related cause of death in this age range. Numerous interested groups including the National Cancer Institute have met to address the research and cancer care needs of AYAs. This review highlights how these gaps in care during and after treatment can affect future health of this population of patients. Access to care, models of survivorship care, and lack of provider education are discussed. Survivorship care and use of guidelines, and promotion of psychosocial support and health behaviors during treatment and beyond are essential to optimizing future health of AYA patients.     

Health‐related quality of life in adolescents and young adults with cancer – Including a focus on economic evaluation

Health‐related quality of life (HRQL) is an amalgam of three elements – the opportunities that a person's health status affords, the constraints that it places upon the person and the value that a person places on his/her health status. HRQL measures are specific, for example for a disease, or generic with broad applicability. The latter include preference‐based measures that can be used to generate quality‐adjusted life years and so contribute to economic evaluation. Measures of HRQL in adolescents and young adults (AYAs) with cancer may fail to capture some important dimensions, for example sexual health. However, the use of HRQL measures in this population has identified burdens of morbidity according to disease, treatment status and duration of follow‐up. There are few economic evaluations of the treatment of cancer in AYAs but preliminary evidence suggests that this is a cost‐effective undertaking. Opportunities abound to include measurement of HRQL in routine clinical care.     

Ethical issues in the care of adolescent and young adult oncology patients

The diagnosis and treatment of cancer leads to short‐term and long‐term challenges for every patient. This is especially true for adolescents and young adults (AYAs) with cancer who strive to gain independence, autonomy, confidence, and social status while developing into adulthood. In this article, we review prominent ethical issues in AYA oncology that are related to autonomy, shared decision‐making, care refusal or abandonment, end‐of‐life care, truth telling, and fertility preservation. Clinicians should recognize that AYA patients develop at their own pace; the onus lies with clinicians to determine the patient's interests, values, maturity, and desire to participate in decision‐making.     

Attitudes and practices of pediatric oncology providers regarding fertility issues

PURPOSE: Given the higher survival rates of childhood cancer, health care providers must be aware of the side effects of cancer therapies to educate patients and provide appropriate interventions to reduce cancer-related morbidity. To understand the current practices and attitudes in a pediatric hematology/oncology clinic, health care providers were surveyed regarding fertility issues pertinent to their patient care. PARTICIPANTS AND INSTRUMENTS: In this study, 93.8% (30/32) health care providers in one pediatric hematology/oncology department completed a 44-item survey assessing knowledge, current practices, obstacles to current practices, perceptions of patient differences, and improvements to future practice. RESULTS: The majority of health care providers were aware of the adverse effects of alkylating agents (90.7%) and of abdominal and pelvic radiation (100.0%) on fertility. However, only half were aware of gender differences in gonadotoxicity (50.0%) or knowledgeable of current research and technology in fertility preservation (53.3%). While only 34.6% of providers currently consulted with specialists, nearly all (92.8%) indicated a desire to do so in the future, but 64.3% indicated difficulties in finding proper facilities and specialists for their patients. Almost all (96.6%) agreed that providers and patient families need more information regarding the effects of cancer therapy on fertility. CONCLUSIONS: Surveyed pediatric oncology providers considered fertility to be an important issue for childhood cancer patients and desired more resources regarding effects on fertility and fertility preservation. Greater communication needs to be established between pediatric oncology providers and specialists in reproductive medicine and endocrinology to ensure adequate professional collaboration and patient referrals.     

Strengthening health services to deliver nutrition education to promote complementary feeding and healthy growth of infants and young children: formative research for a successful intervention in peri‐urban Trujillo,Peru

Formative research is critical for developing effective nutrition‐specific interventions to improve infant and young child (IYC) feeding practices and promote healthy growth. Health workers interact with caregivers during health facility visits, yet there is limited research about how to optimize delivery of such interventions during these visits. The extensive reach of IYC health services globally calls for research to address this gap. In Trujillo, Peru, formative research was conducted to explore complementary feeding practices with caregivers as well as health worker routines and interactions with caregivers related to feeding and healthy growth; results informed the development and delivery of an educational intervention. Multiple qualitative methods were used to collect data on a purposive sample of health workers and caregivers from three health facilities and communities: household trials followed. Complementary feeding messages with doable behaviours were developed, and three were selected as key to promote based on their nutritional impact and cultural acceptability. In the health facilities, medical consultation, well‐child visits and nutrition consultation all dealt with aspects of IYC nutrition/growth during their interactions with caregivers but were independent and inconsistent in approach. A nutrition education strategy was developed based on consistency, quality and coverage in the IYC health services. We conclude that formative research undertaken in the community and IYC health services was critical to developing a successful and culturally relevant intervention to promote optimal complementary feeding practices and healthy growth during interactions between health workers and caregivers at routine health facility visits. © 2016 John Wiley & Sons Ltd     

Adolescent and Young Adult Patient Engagement and Participation in Survey‐Based Research: A Report From the “Resilience in Adolescents and Young Adults With Cancer” Study

Conducting patient‐reported outcomes research with adolescents and young adults (AYAs) is difficult due to low participation rates and high attrition. Forty‐seven AYAs with newly diagnosed cancer at two large hospitals were prospectively surveyed at the time of diagnosis and 3–6 and 12–18 months later. A subset participated in 1:1 semistructured interviews. Attrition prompted early study closure at one site. The majority of patients preferred paper–pencil to online surveys. Interview participants were more likely to complete surveys (e.g., 93% vs. 58% completion of 3–6 month surveys, P = 0.02). Engaging patients through qualitative methodologies and using patient‐preferred instruments may optimize future research success.     

Adolescents and young adults with cancer: An orphaned population

Adolescents and young adults (AYAs [15 to 29 years of age]) with cancer have a distinct cancer epidemiology, evolving hormonal milieu, maturing development, transitions in autonomy, increasing demands in education, entry into the workplace and family responsibilities. The prevalence of epithelial cancers in AYA patients represents a major shift from the embryonal cancers that predominate in early childhood. Thus, one would expect a specialized expertise to be required in caring for these patients, who typically fall between paediatric and oncology spheres of practice. Complex issues contribute to the lower survival rates noted for AYAs compared with those of younger patients, even with the same cancer. Cooperative group clinical trial participation has been crucial in advancing the excellent outcomes accomplished in paediatric oncology, yet participation by adolescents in clinical trials (either adult or paediatric) is typically low. There is increasing evidence that both appropriate location of care and access to specialists in paediatric or adult oncology contribute to favourable outcomes. Issues specific to AYA patients should be studied rigorously so that evidence-based approaches may be used to reduce waiting times, ensure prompt referral to appropriate centres, increase accrual to clinical trials, foster compliance, provide comprehensive supportive care and promote programs designed to enhance survivorship.     

Adolescent and young adult Hodgkin lymphoma: Raising the bar through collaborative science and multidisciplinary care

Hodgkin lymphoma (HL) is one of the most common cancers in the adolescent and young adult (AYA) population (15–39 years). Despite continued improvements in HL outcomes, AYAs have not exhibited survival gains to the same extent as other age groups. At present, details about tumor biology, optimal therapeutic approaches, supportive care needs, and long‐term toxicities in AYAs with HL remain understudied. Herein, we summarize the current state of the AYA population with HL, specifically focusing on how collaborations across the pediatric and medical oncology divide, coupled with multidisciplinary patient care, can further optimize outcomes for this group of patients.     

Oncofertility—An emerging discipline rather than a special consideration

Originally absent from the oncologist's consult, then placed in a ‘quality of life’ rubric, oncofertility should now be an essential part of a comprehensive cancer treatment plan in patients of reproductive age, including adolescents and young adults (AYAs). Oncofertility encompasses the endocrine health of the patient, as well as fertility management options. Thus, pubertal transitions in males and females, bone health, and menstrual health are all part of this discipline, enabling practitioners to work in interdisciplinary teams to solve problems in reproductive health. This review provides a summary of the essential considerations required for the assessement of reproductive risk and choice of fertility preservation options as well as considerations for developing oncofertility services for AYAs.     

Why Parents Seek Care for Acute Illness in the Clinic or the ED: The Role of Health Literacy

Objective

To explore the decision to seek care and decision-making regarding location of care among parents with low and adequate health literacy.

Micronutrient powder use in Arequipa,Peru: Barriers and enablers across multiple levels

In Peru, nearly half of children aged 6–36 months were diagnosed with anaemia in 2017. To address this disease, the Peruvian Ministry of Health implemented a national programme in 2014, distributing free micronutrient powders (MNPs) to all children of this age. However, rates of childhood anaemia remain high. The aim of this study was to explore factors at all levels of the Social‐Ecological Model that affect MNP use and adherence in Arequipa, an Andean city with childhood anaemia rates higher than the national average. We conducted in‐depth interviews with 20 health personnel and 24 caregivers and 12 focus group discussions with 105 caregivers. We identified numerous barriers, including negative side effects (constipation, vomiting, and diarrhoea), poor taste of MNP, lack of familial and peer support for its use, insufficient informational resources provided by the health system, and limited human resources that constricted health personnel abilities to implement MNP programming successfully. Facilitators identified included concern about the long‐term effects of anaemia, support from organizations external to the health system, well‐coordinated care within the health system, and provision of resources by the Ministry of Health. We found that community or organizational and societal factors were key to limited MNP use and adherence, specifically the limited time health personnel have to address caregivers' doubts during appointments and the lack of informational resources outside of these appointments. Potential policy implications could be to increase informational resources available outside of individualized counselling by strengthening existing collaborations with community organizations, increasing media coverage, and providing group counselling.     

Perceptions of chemotherapy calendar creation among US pediatric oncologists

Background

An effective chemotherapy calendar system between the clinician and the patient/caregiver can improve patient-centered outcomes. There is lack of research on how chemotherapy calendars are created and what aspects are important to pediatric oncology physicians.

Procedure

In an online survey of pediatric oncology physicians, we evaluated institutional practices, perceptions of chemotherapy calendar creation, and desires for future tools. A total of 220 survey participants provided data (10.4% participant response rate) from 123 institutions (53.5% represented institutions).

Results

Participants indicated that 72% always or most of the time their institution provides a chemotherapy calendar, most commonly at the start of a new cycle (90%) or with a dosing change (68%). Factors such as the health literacy of the family, prior nonadherence, type of cancer, and desire of the family affected the creation decision. Advanced practice providers (45%) or nurse coordinator/navigators (43%) were most likely to create the chemotherapy calendar. No significant difference was found between the likelihood of creating a chemotherapy calendar and institutional size (p = .09) or physician years in practice (p = .26). Approximately 95% of participants indicated chemotherapy calendar creation software that improved ease and efficiency would be moderately to extremely useful.

Conclusion

Future efforts should focus on co-design of an efficient and effective chemotherapy calendar by engaging with nursing and advanced practice providers along with caregivers of children with cancer.