Development of a Self-management and Peer-Mentoring Intervention to Improve Transition Readiness Among Young Adult Survivors of Pediatric Cancer: Formative Qualitative Research Study.

BACKGROUND: Childhood cancer survivors require lifelong risk-based follow-up care. It should be noted that less than one-third of adult survivors of childhood cancer report any survivor-focused care, and fewer than 1 in 5 obtain risk-based follow-up care. It is thought that this may be due to inadequate transition readiness, including low levels of knowledge, skills, motivation, and resources to make the transition to independent self-management of follow-up care. Interventions that focus specifically on improving the transition from parent-managed to self-managed care are needed. Theory and prior research suggest that targeting self-management skills and using peer mentoring may be innovative strategies to improve transition readiness. OBJECTIVE: This study aims to identify the content of a self-management intervention to improve transition readiness among adolescent and young adult (AYA) survivors. METHODS: Intervention development occurred in 3 stages: formative research with AYA survivors to identify barriers and facilitators to obtaining risk-based survivorship care, content development using feedback from multiple stakeholders (AYA survivors, parents, and providers), and content refinement (usability testing) of the initial proposed educational modules for the program. Content analysis, guided by the social-ecological model of AYA readiness for transition, was used to identify themes and develop and refine the content for the intervention. RESULTS: A total of 19 AYA survivors participated in the formative research stage, and 10 AYA survivors, parents, and health care providers participated in the content development and refinement stages. The major barrier and facilitator themes identified included knowledge of cancer history and risks; relationships with health care providers; relationships with family members involved in care; emotions about health, follow-up care, and transfer of care; and lifestyle behaviors and life transitions. These themes were translated into 5 self-management modules: understanding treatment history and the survivorship care plan, managing health care logistics and insurance, communicating with health care providers and family members involved in care, dealing with emotions, and staying healthy in the context of life transitions. Feedback from the key stakeholders indicated that the content was relevant but should include participative elements (videos and tailored feedback) to make the intervention more engaging. The AYA survivors were receptive to the idea of working with a peer mentor and expressed a preference for using SMS text messaging, telephone calls, or videoconference to communicate with their mentor. CONCLUSIONS: Incorporating AYA survivors, parents, and providers in the design was essential to developing the content of a self-management and peer-mentoring intervention. AYA survivors confirmed the important targets for the intervention and facilitated design decisions in line with our target users' preferences. The next step will be to conduct a single-arm trial to determine the feasibility and acceptability of the proposed intervention among AYA survivors of childhood cancer.

Feasibility and Acceptability of Bright IDEAS-Young Adults: A Problem-Solving Skills Training Intervention.

BACKGROUND: Young adults with cancer are a vulnerable group with unique emotional, social, and practical needs. There is a lack of evidence-based interventions to address their needs and to foster skills that could increase their capacity to cope. Bright IDEAS is a problem-solving skills training intervention that has demonstrated efficacy in improving people's problem-solving ability and reducing distress among caregivers of children with cancer. This study evaluated the feasibility and acceptability of Bright IDEAS adapted for young adults (Bright IDEAS-YA). METHODS: Forty young adults recently diagnosed with cancer were enrolled in a single arm feasibility study. RESULTS: Feasibility was demonstrated by the adequate enrollment (67.8%), retention (80.0%), and participants' adherence to the intervention (average of 5.2 out of 6 sessions completed). Participants reported satisfaction with the intervention. Qualitative feedback identified the systematic approach to problem-solving and interaction with the trainer as strengths of the intervention. Participants demonstrated improvements in problem-solving skills and symptoms of depression and anxiety. CONCLUSIONS: In conclusion, the results support the feasibility of the intervention and an adequately powered randomized controlled trial is needed to determine the efficacy of the intervention on psychosocial outcomes.

Recommendations for the surveillance of education and employment outcomes in survivors of childhood, adolescent, and young adult cancer: A report from the International Late Effects of Childhood Cancer Guideline Harmonization Group.

Educational achievement and employment outcomes are critical indicators of quality of life in survivors of childhood, adolescent, and young adult (CAYA) cancer. This review is aimed at providing an evidence-based clinical practice guideline (CPG) with internationally harmonized recommendations for the surveillance of education and employment outcomes in survivors of CAYA cancer diagnosed before the age of 30 years. The CPG was developed by a multidisciplinary panel under the umbrella of the International Late Effects of Childhood Cancer Guideline Harmonization Group. After evaluating concordances and discordances of 4 existing CPGs, the authors performed a systematic literature search through February 2021. They screened articles for eligibility, assessed quality, and extracted and summarized the data from included articles. The authors formulated recommendations based on the evidence and clinical judgment. There were 3930 articles identified, and 83 of them, originating from 17 countries, were included. On a group level, survivors were more likely to have lower educational achievement and more likely to be unemployed than comparisons. Key risk factors for poor outcomes included receiving a primary diagnosis of a central nervous system tumor and experiencing late effects. The authors recommend that health care providers be aware of the risk of educational and employment problems, implement regular surveillance, and refer survivors to specialists if problems are identified. In conclusion, this review presents a harmonized CPG that aims to facilitate evidence-based care, positively influence education and employment outcomes, and ultimately minimize the burden of disease and treatment-related late adverse effects for survivors of CAYA cancers. LAY SUMMARY: A multidisciplinary panel has developed guidelines for the surveillance of education and employment outcomes among survivors of childhood, adolescent, and young adult cancer. On the basis of evidence showing that survivors are at risk for lower educational achievement and unemployment, it is recommended that all survivors receive regular screening for educational and employment outcomes.

Technology-Based Peer Support Interventions for Adolescents with Chronic Illness: A Systematic Review.

Technology may help adolescents with chronic illnesses overcome barriers to accessing peer support, which has been associated with better quality of life and health outcomes. This review aimed to describe technology-based peer support interventions for adolescents with chronic illness following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Of 3781 articles identified, 32 met inclusion criteria. The most common technologies were websites with discussion forums (n = 18), chat messaging (n = 9), and video conferencing (n = 7). Most studies (69%) focused on feasibility and had small sample sizes. Results support the feasibility and acceptability of these interventions. Results suggested positive effects on social support, but were mixed on isolation, quality of life, and disease self-management. There were too few adequately powered randomized controlled trials to determine efficacy of these interventions at this time. Future work should use rigorous methods to evaluate efficacy and account for rapid shifts in technology for adolescent communication.

mySmartCheck, a Digital Intervention to Promote Skin Self-examination Among Individuals Diagnosed With or at Risk for Melanoma: A Randomized Clinical Trial.

BACKGROUND: Regular skin self-examination (SSE) reduces melanoma mortality but is not often conducted. PURPOSE: To promote SSE performance in individuals at increased risk for melanoma. METHODS: One hundred sixteen individuals at heightened risk for development of melanoma (i.e., personal/family history of melanoma, high-risk mole phenotype) who did not conduct a thorough SSE during in the prior 3 months were randomly assigned to receive either an automated internet-based intervention (mySmartCheck) or usual care (UC). One hundred sixteen participants completed surveys before random assignment and 99 completed the follow-up survey 13-weeks afterward. The primary outcome was participant self-reported examination (SSE) of all 15 parts of the body in the last 3 months. Secondary outcomes were SSE of any part of the body in the last 3 months and number of body parts examined during the last SSE. RESULTS: More mySmartCheck participants examined all 15 body parts (32.6% vs. 7.1%, p = .001). More individuals in mySmartCheck reported conducting SSE on any body part than those in UC (81.4% vs. 62.5%, p = .04). Effect sizes were large (d = 1.19 all 15 body parts) to moderate (d = 0.55 for any body part). mySmartCheck participants examined more body areas than UC participants (12.7 vs. 10.3, p = 0.003) during the last SSE. Participants in mySmartCheck reported higher levels of knowledge of suspicious lesions, SSE benefits, SSE self-efficacy, and planning for SSE, and lower SSE barriers, than those assigned to UC. CONCLUSIONS: mySmartCheck had a significant positive impact on SSE performance and behaviors. Additional research with a larger sample size, a longer follow-up, and more varied clinical settings is needed. TRIAL REGISTRATION: ClinicalTrials.gov registration # NCT03725449 (https://clinicaltrials.gov/ct2/show/NCT03725449).

A scoping review of transition interventions for young adults with sickle cell disease.

Standardized programming for individuals with sickle cell disease (SCD) transitioning from pediatric to adult-centered care does not currently exist, resulting in high rates of mortality and morbidity. This scoping review examines and evaluates the current literature on SCD transition programs and interventions. Eligible studies described an existing program for individuals with SCD aged 12-29 years preparing to transition. The Evidence Project risk-of-bias tool was used to assess article quality. We identified 30 eligible articles, of which, only two were randomized controlled trials. Many studies have incomplete reports of feasibility information, such as completion rates, patient characteristics, and attrition; all studies were limited to a single institution; and most studies were rated high for risk of bias. Progress has been made in designing and gathering initial evaluation data for SCD transition programs; however, there is a need for higher quality studies, consistent assessment, and better dissemination of programs.

Feasibility of Medical Student Mentors to Improve Transition in Sickle Cell Disease.

OBJECTIVE: Advances in medical care have resulted in nearly 95% of all children with sickle cell disease (SCD) living to adulthood. There is a lack of effective transition programming, contributing to high rates of mortality and morbidity among adolescents and young adults (AYAs) during the transition from pediatric to adult healthcare. This nonrandomized study evaluated the feasibility, acceptability, and preliminary outcomes of a novel medical student mentor intervention to improve transition outcomes for AYA with SCD. METHODS: Eligible participants were ages 18-25 years, either preparing for transition or had transferred to adult care within the past year. Twenty-four AYA with SCD (Mage = 20.3, SD = 2.6) enrolled in the program and were matched with a medical student mentor. Feasibility and acceptability of the intervention was assessed through enrollment rates, reasons for refusal, retention rates, engagement with the intervention, satisfaction, and reasons for drop-out. Dependent t-tests were used to evaluate the preliminary effects of the intervention on patient transition readiness, health-related quality of life, self-efficacy, SCD knowledge, medication adherence, and health literacy. RESULTS: Participants (N = 24) demonstrated adequate retention (75.0%), adherence to the intervention (M = 5.3 of 6 sessions), and satisfaction with the intervention components. Participants demonstrated significant improvements in transition readiness (p = .001), self-efficacy (p = .002), medication adherence (p = .02), and health literacy (p = .05). CONCLUSIONS: A medical student mentor intervention to facilitate transition from pediatric to adult care for AYA with SCD is both feasible and acceptable to patients and medical students. Preliminary results suggest benefits for patients, warranting a larger efficacy study.

Feasibility of FitSurvivor: A technology-enhanced group-based fitness intervention for adolescent and young adult survivors of childhood cancer.

BACKGROUND: This study evaluated the feasibility of a technology-enhanced group-based fitness intervention for adolescent and young adult (AYA) survivors of childhood cancer. PROCEDURE: AYA survivors ages 13-25 years were randomized to the intervention (eight in-person group sessions with mobile app and FitBit followed by 4 weeks of app and FitBit only) or waitlist control. Assessments were at 0, 2, 3, 6, and 9 months. Feasibility was evaluated by enrollment, retention, attendance, app engagement, and satisfaction. Secondary outcomes included physical activity, muscular strength/endurance, cardiorespiratory fitness, health-related quality of life, and fatigue. RESULTS: A total of 354 survivors were mailed participation letters; 68 (19%) were screened, of which 56 were eligible and 49 enrolled (88% of those screened eligible, 14% of total potentially eligible). Forty-nine survivors (Mage  = 18.5 years, 49% female) completed baseline assessments and were randomized (25 intervention, 24 waitlist). Thirty-seven (76%) completed the postintervention assessment and 32 (65%) completed the final assessment. On average, participants attended 5.7 of eight sessions (range 1-8). Overall intervention satisfaction was high (M = 4.3, SD = 0.58 on 1-5 scale). Satisfaction with the companion app was moderately high (M = 3.4, SD = 0.97). The intervention group demonstrated significantly greater improvement in lower body muscle strength compared to the waitlist postintervention, and small but not statistically significant changes in other secondary measures. CONCLUSIONS: A group-based intervention with a mobile app and fitness tracker was acceptable but has limited reach due to geographical barriers and competing demands experienced by AYA survivors.

Digital interventions for adolescent and young adult cancer survivors.

PURPOSE OF REVIEW: AYA patients with cancer have a unique set of psychosocial and support needs to compared with their younger and older counterparts. Digital health interventions overcome many of the barriers to AYA participation in behavioral health interventions. Due to the rapid shifts in digital health, it is important to continually assess the state of the field. RECENT FINDINGS: There has been a sharp increase in the number of digital health interventions published in the literature. Interventions are using a variety of modalities and targeting many health behaviors and psychosocial outcomes. Most studies are focused on feasibility and acceptability, and use single-arm and prepost methodologies. SUMMARY: Although randomized controlled trials remain an important design for evaluating efficacy of interventions, the field of digital health interventions would benefit from employing alternative methodologies and analytic approaches to develop and optimize digital health interventions aligned with rapidly evolving technology.

Associations between linguistic acculturation and skin cancer knowledge and beliefs among U.S. Hispanic adults.

The incidence of melanoma among U.S. Hispanics is rising and Hispanics have poorer melanoma survival compared to non-Hispanic whites. Acculturation has been linked with skin cancer-related behaviors among Hispanic individuals, such that Hispanic individuals who are more acculturated to U.S. norms and attitudes have been found to use sunscreen more frequently, to seek shade and use sun protective clothing less often, to sunbathe and indoor tan more frequently, and to have more sunburns than less acculturated individuals. However, little is known about factors that may account for the effect of acculturation on such behaviors and outcomes. The goal of this study was to examine the association between linguistic acculturation and skin cancer-related knowledge and beliefs among Hispanic adults. 788 Hispanic adults completed an online survey measuring linguistic acculturation, sun protection knowledge, perceived skin cancer risk, perceived severity, perceived worry, skin color preference, perceived suntan benefits, photo-aging concerns, sun protection norms, tanning norms and skin cancer fatalism. Compared with Spanish-acculturated Hispanics, English-acculturated Hispanics had greater knowledge, lower levels of perceived risk of skin cancer, lower perceived severity of skin cancer, less worry about skin cancer, greater perceived suntan benefits, and lower photo-aging concerns. This study highlights the importance of considering an individual's level of acculturation when designing skin cancer prevention interventions. Additional research is warranted to develop and test culturally relevant, tailored interventions to reduce the risks of skin cancer among U.S. Hispanics.

Wanting more: A look at preclinical students' desires for increased clinical experiences and interest in mentoring young adults with chronic illness.

A growing population of children with chronic illness must transition from pediatric to adult healthcare. Medical students receive little formal training about the needs of these young patients. Strategies for educating students about how to address medical and psychosocial consequences of these conditions are needed. Interventions pairing medical students as mentors for young adults with chronic illness may provide dual benefit for both patient and student. To establish the feasibility of developing this type of program, we surveyed 165 medical students about their extra-curricular and clinical experiences as well their interest in and expectations for a patient mentoring experience.

Problem-solving skills, parent-adolescent communication, dyadic functioning, and distress among adolescents with cancer.

Some adolescents with cancer report distress and unmet needs. Guided by the disability-stress-coping model, we evaluated associations among problem-solving skills, parent-adolescent cancer-related communication, parent-adolescent dyadic functioning, and distress in adolescents with cancer. Thirty-nine adolescent-parent dyads completed measures of these constructs. Adolescents were 14-20 years old on treatment or within 1 year of completing treatment. Better problem-solving skills were correlated with lower adolescent distress (r = -0.70, P < 0.001). Adolescent-reported cancer-related communication problems and dyadic functioning were not significantly related to adolescent distress (rs < 0.18). Future work should examine use of problem-solving interventions to decrease distress for adolescents with cancer.

Digital Health Interventions for Adolescent and Young Adult Cancer Survivors.

This narrative review describes the evidence regarding digital health interventions targeting adolescent and young adult (AYA) cancer survivors. We reviewed the published literature for studies involving Internet, mHealth, social media, telehealth, and other digital interventions for AYA survivors. We highlight selected studies to illustrate the state of the research in this unique patient population. Interventions have used various digital modalities to improve health behaviors (eg, physical activity, nutrition, tobacco cessation), enhance emotional well-being, track and intervene on cancer-related symptoms, and improve survivorship care delivery. The majority of studies have demonstrated feasibility and acceptability of digital health interventions for AYA survivors, but few efficacy studies have been conducted. Digital health interventions are promising to address unmet psychosocial and health information needs of AYA survivors. Researchers should use rigorous development and evaluation methods to demonstrate the efficacy of these approaches to improve health outcomes for AYA survivors.

The Behavior Rating Inventory of Executive Function (BRIEF) to Identify Pediatric Acute Lymphoblastic Leukemia (ALL) Survivors At Risk for Neurocognitive Impairment.

Neurocognitive problems, including executive dysfunction, are potential late effects of pediatric acute lymphoblastic leukemia treatment. Surveillance for neurocognitive impairment in a timely and efficient manner is imperative to ongoing clinical care. We sought to determine if the Behavior Rating Inventory of Executive Function (BRIEF) Parent Form identified leukemia survivors with cognitive impairment. In this 28-site cross-sectional study, parents of 256 children, a mean of 8.9±2.2 years after treatment for standard-risk precursor-B acute lymphoblastic leukemia and in first remission, completed the BRIEF. We used a multivariate logistic regression to calculate the association between elevated scores on 3 composite BRIEF indices (Behavioral Regulation Index, Metacognition Index, Global Executive Composite [GEC]) and special education and attention-deficit/hyperactivity disorder (ADHD) outcomes. All BRIEF index scores were significantly associated with receipt of special education services or ADHD. The BRI was most strongly associated with ADHD (odds ratios=4.33; 95% confidence interval, 1.72-10.9). The GEC was most strongly associated with ADHD (odds ratios=4.46; 95% confidence interval, 1.77-11.22). Elevated scores on the BRIEF GEC were associated with low sensitivity (24.1 to 39.1) for detecting the outcomes but better specificity (range, 87.7 to 89.3). These results suggest that the parent-completed BRIEF is associated with clinical outcomes but is not a sensitive tool to identify leukemia survivors that require a comprehensive neuropsychological assessment.

Factors Associated With Noncompliance With Long-term Follow-up Care Among Pediatric Cancer Survivors.

Most childhood cancer survivors do not receive risk-based care through a survivorship program, but factors associated with dropping out of care are unclear. This study aimed to identify characteristics of pediatric cancer survivors who do not return to a cancer center survivorship program for recommended care after at least 1 visit compared with those who continue to attend. Patient characteristics (demographics, school functioning, psychiatric history) and treatment characteristics (diagnosis, treatment) were abstracted from medical records for all eligible patients. Unadjusted and multivariable logistic regression analyses examined the associations among patient and treatment characteristics and nonattendance. The charts of 400 eligible patients (children below 18, n=123; adults, n=277) were reviewed. Of these, 60.3% of patients had not been seen in clinic within 1 year of their last recommended follow-up appointment. Adult-aged survivors were less likely to return to clinic than child-aged survivors (P<0.001). For child survivors, longer time off treatment was associated with noncompliance with follow-up. For adult survivors, current age, nonwhite race, and longer time off treatment were associated with noncompliance. Additional methods to identify survivors at risk for noncompliance with follow-up and interventions for at-risk survivors are needed to improve survivorship care.

Survivorship Care Preferences: A Pilot Study of Young Adults With Cancer

Background: Adolescents and young adults (AYAs) face increased risk for physical, social, and cognitive late complications of cancer therapy. Strategies are needed to better engage AYAs in survivorship research. Objectives: This study aimed to determine the feasibility of enrolling AYAs within six months of diagnosis to a survivorship study and assess their health concerns and survivorship care preferences. Methods: Patients aged 15­34 years who were diagnosed with leukemia, lymphoma, or sarcoma at three Connecticut hospitals from 2008­2011 were identified and recruited by mail. Participants and their physicians received a survivorship care plan. Participants completed surveys at 6 months and 18 months after diagnosis. Findings: Recruiting AYAs to survivorship research remains challenging, even when approaching them soon after diagnosis. Novel strategies are needed for nurses and other healthcare team members to engage AYAs in survivorship care and research.

Impact of Caregiving for a Child With Cancer on Parental Health Behaviors, Relationship Quality, and Spiritual Faith: Do Lone Parents Fare Worse?

Caregiving stress has been associated with changes in the psychological and physical health of parents of children with cancer, including both partnered and single parents. While parents who indicate "single" on a demographic checklist are typically designated as single parents, a parent can be legally single and still have considerable support caring for an ill child. Correspondingly, an individual can be married/partnered and feel alone when caring for a child with serious illness. In the current study, we report the results from our exploratory analyses of parent self-reports of behavior changes during their child's treatment. Parents (N = 263) of children diagnosed with cancer were enrolled at 10 cancer centers. Parents reported significant worsening of all their own health behaviors surveyed, including poorer diet and nutrition, decreased physical activity, and less time spent engaged in enjoyable activities 6 to 18 months following their child's diagnosis. More partnered parents found support from friends increased or stayed the same since their child's diagnosis, whereas a higher proportion of lone parents reported relationships with friends getting worse. More lone parents reported that the quality of their relationship with the ill child's siblings had gotten worse since their child's diagnosis. Spiritual faith increased for all parents.

Contrasting views of risk perception and influence of financial compensation between adolescent research participants and their parents.

U.S. regulations governing pediatric research do not specify the assent process. To identify best practices, it is important to examine parents' and adolescents' views. The present study focuses on parents' and adolescents' views regarding possible research risks and the influence of financial compensation on their willingness to accept research procedures. Interviews were conducted with 177 adolescents participating in clinical research for a medical or psychiatric illness, or as healthy volunteers, and a parent. Significant discordance was found between how bothered the teen would feel from research-related side effects and procedures compared with parental report. Most teens were willing to accept non-beneficial procedures without compensation. Payment had significantly greater influence on healthy volunteers and their parents compared with those with a medical or psychiatric illness. Discordance between adolescent and parental views about risks recommends obtaining direct input from adolescents during the assent process. Modest payments should not raise concerns of undue inducement, especially in teens with pre-existing conditions.

Pediatric psycho-oncology care: standards, guidelines, and consensus reports.

OBJECTIVE: The aim of this study was to identify existing guidelines, standards, or consensus-based reports for psychosocial care of children with cancer and their families. PURPOSE: Psychosocial standards of care for children with cancer can systematize the approach to care and create a replicable model that can be utilized in pediatric hospitals around the world. Determining gaps in existing standards in pediatric psycho-oncology can guide development of useful evidence-based and consensus-based standards. METHODS: The MEDLINE and PubMed databases were searched by investigators at two major pediatric oncology centers for existing guidelines, consensus-based reports, or standards for psychosocial care of patients with pediatric cancer and their families published in peer-reviewed journals in English between 1980 and 2013. RESULTS: We located 27 articles about psychosocial care that met inclusion criteria: 5 set forth standards, 19 were guidelines, and 3 were consensus-based reports. None was sufficiently up to date, comprehensive, specific enough, or evidence- or consensus-based to serve as a current standard for psychosocial care for children with cancer and their families. CONCLUSION: Despite calls by a number of international pediatric oncology and psycho-oncology professional organizations about the urgency of addressing the psychosocial needs of the child with cancer to reduce suffering, there remains a need for development of a widely acceptable, evidence-based and consensus-based, comprehensive standard of care to guide provision of essential psychosocial services to all patients with pediatric cancer.