Clinical Trial Availability by Location for 1000 Simulated AYA Patients.

Purpose: Adolescent and young adult (AYA) oncology patients are less likely to enroll in clinical trials than pediatric patients. After two decades of effort to improve enrollments, challenges remain. We sought to explore where phase II and phase III trials are available for an AYA cohort. Methods: Based on the epidemiology of AYA cancers and outcomes, we assembled a simulated data set of 1000 patients (AYAsims). Available phase II and phase III trials were matched to diseases and treatment setting (relapsed or newly diagnosed) and characterized by sponsor (industry, National Clinical Trials Network [NCTN], investigator initiated) and location (Moffitt Cancer Center [MCC], community or pediatric). Results: The majority of AYAsims had potential first line (64.4%) and/or relapsed (68.1%) trials. The majority of these opportunities were industry-sponsored trials available at MCC. Phase II trials for relapsed cancer were most often at the MCC and more likely to be investigator-initiated trials. Trial availability for histologies varied widely, likely reflective of the overall epidemiology of cancers beyond the AYA age range. Pediatric hospitals offered trials for select cancers but had a trial portfolio that matched the fewest number of AYAsims. Conclusions: In general, newly diagnosed AYA patients have trial enrollment opportunities in both the community and comprehensive cancer center setting with select diagnoses having more trials in pediatric hospitals. Relapsed AYA patients have the most trial opportunities at a comprehensive cancer center. A facile system that navigates patients across health systems would maximize potential AYA trial enrollments.

Anaplastic lymphoma kinase inhibitor therapy in the treatment of inflammatory myofibroblastic tumors in pediatric patients: Case reports and literature review.

BACKGROUND: Inflammatory myofibroblastic tumors (IMTs) are a rare subtype of inflammatory pseudotumor frequently associated with rearrangement of the anaplastic lymphoma kinase (ALK) gene. Their treatment has historically relied on at-times challenging and morbid surgical excision. Recent studies have shown that neo/adjuvant therapy with ALK inhibitors can significantly enhance outcomes in select patients. METHODS: A systematic literature review was performed to characterize comprehensive treatment of ALK-positive IMTs in the pediatric population. This report also includes two patients from our home institutions not previously reported in the literature. RESULTS: We identified a total of 27 patients in 12 studies in addition to 2 patients from the senior authors' institution for a total of 29 patients (median age, 7 years; 52% male). The IMTs comprised a wide range of anatomic locations. Almost half (12, 41.3%) were treated with ALK-inhibitors alone and felt to be in remission. The remainder was treated with ALK-inhibitors either before or after surgery and had a curative response. CONCLUSIONS: ALK-positive IMTs can be successfully treated with ALK-inhibition alone or in combination with surgical resection. Further genetic characterization may be helpful in determining more precise treatment and defining needed durations thereof.

Reaching Adolescent and Young Adult Cancer Patients Through Social Media: Impact of the Photographs of Meaning Program.

Purpose: This study assessed the feasibility and preliminary efficacy of the Photographs of Meaning Program for Adolescent and Young Adult cancer patients and survivors (POM-AYA). Methods: POM-AYA is a structured 10-week meaning-based intervention in which participants post photographs and accompanying narratives through a social media platform. Measures of depression, overall quality of life (QoL), and spiritual well-being were assessed on consent (T1), after completing the 10-week intervention (T2) and 2 months' postintervention (T3). Participants also completed a satisfaction questionnaire and follow-up semi-structured interviews. Results: Thirty AYA cancer patients and survivors (ages 17-36) were enrolled in the study. At T2, depressive symptoms were significantly lower and QoL was significantly higher compared with T1. These gains were maintained at T3. There were no significant differences in reported spiritual well-being across the study period. Overall, participants reported high rates of study satisfaction in both the survey and qualitative feedback. Conclusion: POM-AYA appears to be a potentially beneficial, widely accessible intervention in reducing depressive symptoms and increasing QoL in AYA cancer patients and survivors.

The Experience of Pediatric Palliative Caregiving: A Qualitative Analysis From the Photographs of Meaning Program.

The Photographs of Meaning Program for pediatric palliative caregivers (POM-PPCG) is an innovative, meaning-based intervention utilizing photovoice and social media components. In 2017, 9 pediatric palliative caregivers participated in this intervention. During the social media portion of the POM-PPCG, participants were presented with weekly themes based on a meaning-making curriculum. In response, they took photographs, applied either audio or typed narratives, and shared them via social media. Ninety-five photographs with narratives were produced during the intervention. Through thematic qualitative analysis with consensual qualitative research components, 5 themes were identified: Love, Challenges, Loss, Coping, and The New Normal. This study adds to existing literature by shedding light on the experiences of caregivers of children with palliative care needs. Findings from this research contribute not only to the innovative use of qualitative methods but also to the clinical knowledge and practice regarding the pediatric palliative caregiver experience.

The Photographs of Meaning Program for Pediatric Palliative Caregivers: Feasibility of a Novel Meaning-Making Intervention.

BACKGROUND: Research indicates that informal caregiving can have intense physical and mental impact on the individual. Relative to caregivers of adults, pediatric palliative caregivers appear less in literature despite experiencing greater mental, physical, financial, and social strain. There is limited research on the creation and evaluation of interventions specifically for this population despite clear need. OBJECTIVE: This study aims to evaluate the feasibility and engagement of the Photographs of Meaning Program, a modified meaning-making intervention for pediatric palliative caregivers. DESIGN: Participants completed a pre-post intervention meaning-in-life measure. Over a 9-week period, participants followed a meaning-making curriculum whereby they created and shared photo narratives via social media. As part of the intervention, a community photo exhibition was held featuring these photo narratives. Exit interviews were also conducted at study close. SETTING/PARTICIPANTS: Nine individuals providing informal care to children in a pediatric palliative care program participated in the intervention. All participants were female and are older than 18 years. Settings for research include participant homes and at The Center for Hospice and Palliative Care in Cheektowaga, New York. RESULTS: Participants posted 95 photographs and 96 narratives during the intervention, posting on average once each week. Statistical analysis within the small sample indicated an increased presence of meaning in the lives of participants ( P = .022). Exit interviews conveyed satisfaction with the intervention. CONCLUSIONS: Findings suggest that the Photographs of Meaning Program is a practical intervention with life-enhancing potential for pediatric palliative. Future research should aim to collect additional evidence of the intervention's effectiveness.

Survivorship needs of adolescent and young adult cancer survivors: a concept mapping analysis.

PURPOSE: Adolescents and young adults (AYAs) with cancer are known to have complex medical and psychosocial needs throughout treatment; however, information is lacking about the challenges AYA survivors face after treatment has ended. Focus groups were conducted using a concept mapping framework to better understand the most important issues these patients face in transitioning to survivorship and how prepared they felt to face them. METHODS: AYAs diagnosed between 18 and 39 years old and at least 2 years post-treatment participated in one of six focus groups based on age group and follow-up status. Using a concept mapping design, participants provided important issues during the transition to survivorship and appraised them on three core areas of interest. RESULTS: Analyses revealed salient themes shared across age and follow-up group status, particularly related to the psychosocial, emotional, and cognitive effects of treatment. Differential concerns included those related to patients' developmental concerns-namely, finding a new identity, financial burden of treatment, and fertility concerns after treatment. CONCLUSIONS: AYA cancer survivors continue to have a myriad of issues beyond the immediate treatment phase. Despite a complex list of challenges, these issues largely remained unaddressed by their oncology provider and left patients feeling overwhelmingly ill-prepared to manage their transition to survivorship. IMPLICATIONS FOR CANCER SURVIVORS: AYA cancer survivors have many unaddressed concerns as they transition out of active cancer treatment, largely related to developmental issues they are facing. Survivorship care for these patients would benefit from care planning that takes these unique concerns into account.

A Roadmap to Survivorship: Optimizing Survivorship Care Plans for Adolescent and Young Adult Cancer Survivors.

Purpose: Young adult cancer patients have complex medical and psychosocial needs throughout treatment. Once treatment ends, few young adult cancer survivors (YACS) receive adequate survivorship care. Many YACS do not continue with oncology care after treatment ends. The purpose of this study was to discover the views YACS held about survivorship care and to design age-appropriate survivorship care plans (SCPs). Methods: Twenty-seven YACS (n = 27) participated in a group discussion focusing on their post-treatment experience. The concept of SCPs was introduced and participants provided information on how their care was managed after the completion of their treatment, what factors played a role in their oncological follow-up care, and the potential utility of a SCP in the management of their follow-up survivorship care. SCPs were developed for each participant and feedback requested. Results: SCPs required 45-180 minutes to complete. Barriers to continued follow-up included: loss of health insurance, poor communication with their oncologist once treatment ended, and ongoing adjustment challenges to work, school, and home life. YACS requested more support for psychosocial issues post-treatment, and more information about long- and late-term side effects from treatment. Conclusions: Further research in the utility of SCPs among YACS is warranted as they may have a significant role for YACS. Information on long- and late-term side effects, follow-up care schedule, psychosocial support, and adolescent and young adult-specific resources must be clearly delineated in SCPs.

Adolescent and Young Adult Oncology, Version 2.2018, NCCN Clinical Practice Guidelines in Oncology.

This selection from the NCCN Guidelines for Adolescent and Young Adult (AYA) Oncology focuses on treatment and management considerations for AYA patients with cancer. Compared with older adults with cancer, AYA patients have unique needs regarding treatment, fertility counseling, psychosocial and behavioral issues, and supportive care services. The complete version of the NCCN Guidelines for AYA Oncology addresses additional aspects of caring for AYA patients, including risk factors, screening, diagnosis, and survivorship.

Is Cancer Information Exchanged on Social Media Scientifically Accurate?

Cancer patients and their caregivers are increasingly using social media as a platform to share cancer experiences, connect with support, and exchange cancer-related information. Yet, little is known about the nature and scientific accuracy of cancer-related information exchanged on social media. We conducted a content analysis of 12 months of data from 18 publically available Facebook Pages hosted by parents of children with acute lymphoblastic leukemia (N = 15,852 posts) and extracted all exchanges of medically-oriented cancer information. We systematically coded for themes in the nature of cancer-related information exchanged on personal Facebook Pages and two oncology experts independently evaluated the scientific accuracy of each post. Of the 15,852 total posts, 171 posts contained medically-oriented cancer information. The most frequent type of cancer information exchanged was information related to treatment protocols and health services use (35%) followed by information related to side effects and late effects (26%), medication (16%), medical caregiving strategies (13%), alternative and complementary therapies (8%), and other (2%). Overall, 67% of all cancer information exchanged was deemed medically/scientifically accurate, 19% was not medically/scientifically accurate, and 14% described unproven treatment modalities. These findings highlight the potential utility of social media as a cancer-related resource, but also indicate that providers should focus on recommending reliable, evidence-based sources to patients and caregivers.

Patterns of unmet needs in adolescent and young adult (AYA) cancer survivors: in their own words.

PURPOSE: Categorization of the needs of AYA cancer survivors is primarily based on quantitative analyses of epidemiological and observational research. The present study classified the phenomenological experiences of AYA survivors based on their own language. METHODS: A systematic approach for selecting qualitative studies of unmet needs in AYA cancer survivors was used. Following selection based on quality, survivor statements were entered verbatim and thematic analysis was conducted using NVivo qualitative research software. RESULTS: A total of 1993 AYA cancer survivors (post-treatment) were included in 58 studies (78% individual interviews). Mean age was 27.6 with an average of 8.6 years post-primary treatment. The organizational framework reported in this study was based on a heterogeneous group of cancer types. Thirteen themes including symptoms, function, reproductive health, emotional well-being, health management, health care system, social interaction, romantic relationships, cancer disclosure, normalcy, career development and employment, and school and fiscal concerns were identified. Forty-eight subthemes were also identified covering such areas as fertility, integrative health services, advice for cancer disclosure, family interaction, and insurance challenges. CONCLUSION: Direct analysis of text identified many common unmet needs similarly reported in the quantitative literature. The phenomenological data also provided a breakdown of unmet needs into subthemes or elements of unmet needs. IMPLICATIONS FOR CANCER SURVIVORS: This information can help form the basis for a personalized, valid, and reliable evaluation tool of the range of unmet needs in AYA survivors.

Pegaspargase hypersensitivity reactions: intravenous infusion versus intramuscular injection - a review.

Pegaspargase is a mainstay in the treatment of acute lymphoblastic leukemia. When intravenous (IV) infusion replaced intramuscular (IM) injection as the standard route of administration, there were early reports suggested an increased hypersensitivity reactions (HSRs) rate with IV administration. There have since been eight published reports comparing the incidence of HSRs occurring with IV versus IM pegaspargase. This review analyzes the reports and summarizes their consistent findings where feasible. For grade 3-4 HSRs, the rates are comparable with IV and IM administration. Grade 2 HSRs appear to be more likely with IV than IM administration but the validity of the difference is uncertain. Multiple factors confound the analyses, including the historically controlled nature of the comparisons and the increased likelihood of reporting adverse reactions with IV administration. In summary, the reports do not support the conclusion that pegaspargase-induced HSR rate is more frequent with IV administration.

Cancer Communication on Social Media: Examining How Cancer Caregivers Use Facebook for Cancer-Related Communication.

BACKGROUND: Americans are increasingly using social media (such as Facebook, YouTube, and Twitter) for health-related communication. Much of the previous research on social media and health communication has focused on Facebook groups related to a specific disease or Facebook pages related to an advocacy organization. Less is known about how people communicate about cancer on personal Facebook pages. OBJECTIVE: In this study, we expand upon previous research by examining how cancer caregivers use personal Facebook pages for cancer-related communication. METHODS: We examined themes in cancer-related exchanges through a content analysis of 12 months of data from 18 publically available Facebook pages hosted by parents of children with acute lymphoblastic leukemia (15 852 total posts). RESULTS: Six themes emerged: (1) documenting the cancer journey, (2) sharing emotional strain associated with caregiving, (3) promoting awareness and advocacy about pediatric cancer, (4) fundraising, (5) mobilizing support, and (6) expressing gratitude for support. CONCLUSIONS: Building upon previous research documenting the increasing use of social media for health-related communication and support, our findings show that personal Facebook pages offer a platform for cancer caregivers to share their cancer-related experiences, promote advocacy and awareness, and mobilize social support. IMPLICATIONS FOR PRACTICE: Providers must recognize the importance of social media as a vehicle for support and communication for families of children with cancer. Nurses should educate parents on how to appraise information obtained through Facebook using evidence-based guidelines. Providers can encourage caregivers to use Facebook as a tool for communication, information, and support.

Communication and Exchange of Specialized Health-Related Support Among People With Experiential Similarity on Facebook.

Social support is an important factor that shapes how people cope with illness, and health-related communication among peers managing the same illness (network ties with experiential similarity) offers specialized information, resources, and emotional support. Facebook has become a ubiquitous part of many Americans' lives, and may offer a way for patients and caregivers experiencing a similar illness to exchange specialized health-related support. However, little is known about the content of communication among people who have coped with the same illness on personal Facebook pages. We conducted a content analysis of 12 months of data from 18 publicly available Facebook pages hosted by parents of children with acute lymphoblastic leukemia, focusing on communication between users who self-identified as parents of pediatric cancer patients. Support exchanges between users with experiential similarity contained highly specialized health-related information, including information about health services use, symptom recognition, compliance, medication use, treatment protocols, and medical procedures. Parents also exchanged tailored emotional support through comparison, empathy, encouragement, and hope. Building upon previous research documenting that social media use can widen and diversify support networks, our findings show that cancer caregivers access specialized health-related informational and emotional support through communication with others who have experienced the same illness on personal Facebook pages. These findings have implications for health communication practice and offer evidence to tailor M-Health interventions that leverage existing social media platforms to enhance peer support for patients and caregivers.

Disparities in Adolescents and Young Adults With Cancer

BACKGROUND: Cancer care for adolescents and young adults (AYAs) focuses on the care of patients aged 15 to 39 years. Historically, this group has favorable outcomes based on a preponderance of diagnoses such as thyroid cancers and Hodgkin lymphoma. Improvements in outcomes among the AYA population have lagged behind compared with younger and older populations. METHODS: We discuss and review recent progress in AYA patient care and highlight remaining disparities that exist, including financial disadvantages, need for fertility care, limited clinical trial availability, and other areas of evolving AYA-focused research. RESULTS: Survival rates have not improved for this age group as they have for children and older adults. Disparities are present in the AYA population and have contributed to this lack of progress. CONCLUSIONS: Recognizing disparities in the care of AYAs with cancer has led many medical specialty disciplines to improve the lives of these patients through advocacy, education, and resource development. Research addressing barriers to clinical trial enrollment in this population, quality-of-life issues, and the improvement of survivorship care is also under way.

The Incidence of Hypersensitivity Reactions to Pegylated Asparaginase in Children With Acute Lymphoblastic Leukemia: A City-wide Experience.

Asparaginase (ASNase) is an imperative component of pediatric acute lymphoblastic leukemia (ALL) therapy. Pegylating the ASNase extends its biological half-life in vivo and has become the only ASNase available in the United States for frontline therapy of ALL and lymphoblastic lymphoma. It is either infused intravenously (IV) or injected intramuscularly (IM), administrations of which are associated with hypersensitivity reaction ranging from localized skin reaction to severe anaphylaxis. A retrospective review of 96 medical records of pediatric ALL patients was performed. We compared the incidence of hypersensitivity reaction associated with IV versus IM administration of pegylated ASNase. Ninety-one patients were included in the final analysis; 31 having received pegylated ASNase IV and 60 receiving it IM. The incidence of any grade ≥ 2 hypersensitivity reaction in patients who received IV ASNase was 32.2% compared with 13.3% in the IM group (P=0.032). There was no difference in higher grade hypersensitivity reactions (19.4% vs. 11.7%). Most reactions tended to occur during periods of leukemia therapy that did not include concomitant steroid therapy. Our retrospective analysis indicates that IV administration of pegylated ASNase increases the incidence of low-grade, but not grade 3-4, hypersensitivity reactions compared with IM administration.

Identifying the unmet needs of breast cancer patients post-primary treatment: the Cancer Survivor Profile (CSPro).

PURPOSE: The purpose of this study is to develop a brief measure of problem areas experienced by patients following primary treatment for breast cancer. METHOD: Systematic reviews of the quantitative and qualitative literature were used to inform selection of scale items using (1) valid and reliable items from a national item bank (patient reported outcomes measurement information system [PROMIS]), (2) existing scales from prior breast cancer survivorship research, or (3) items developed by the investigators. RESULTS: Participants (n = 400) were on average 51 years old, highly educated, Caucasian, diagnosed with stage I-III breast cancer, and a median of 1.96 years post-primary treatment. Principal component analysis on a random sample (n = 200) and confirmation on a second random sample (n = 200) indicated that each of the scales under consideration provided a significant measurement model for the symptom burden (CFI = 0.95), health behavior (CFI = 1.00), functional limitation (CFI = 0.99), health care seeking skill (CFI = 0.98), and cancer-related financial strain (CFI = 1.00) broad domains. The median Cronbach's alpha was 0.91. The measure demonstrated convergent, divergent, construct, and clinical validity. Lower levels of fatigue (ß = 0.251. p < 0.000) and pain (ß = 0.221, p < 0.000) and greater health competence (ß = 0.278, p < 0.000) and physical activity (ß = 0.165, p < 0.000) were associated with self-rated global health (F = 60.43, p < 0.000). The final measure consists of 73 items and requires approximately 15 min to complete. DISCUSSION: The Cancer Survivor Profile (CSPro) provides a profile of problem areas supported by epidemiological and qualitative research on unmet needs of breast cancer survivors. IMPLICATIONS FOR CANCER SURVIVORS: Breast cancer survivors can use the CSPro to prioritize problem areas following cancer treatment.

Identifying and addressing the needs of adolescents and young adults with cancer: summary of an Institute of Medicine workshop.

Cancer is the leading disease-related cause of death in adolescents and young adults (AYAs). This population faces many short- and long-term health and psychosocial consequences of cancer diagnosis and treatment, but many programs for cancer treatment, survivorship care, and psychosocial support do not focus on the specific needs of AYA cancer patients. Recognizing this health care disparity, the National Cancer Policy Forum of the Institute of Medicine convened a public workshop to examine the needs of AYA patients with cancer. Workshop participants identified many gaps and challenges in the care of AYA cancer patients and discussed potential strategies to address these needs. Suggestions included ways to improve access to care for AYAs, to deliver cancer care that better meets the medical and psychosocial needs of AYAs, to develop educational programs for providers who care for AYA cancer survivors, and to enhance the evidence base for AYAs with cancer by facilitating participation in research.

Clinical trial enrollment among adolescents with cancer: supplement overview.

BACKGROUND: Survival rates for children with cancer have significantly increased over the past 35 years. However, adolescents with cancer aged 15 to 19 years have had less progress in survival prolongation compared with younger children, which may be due to lower clinical trial enrollment among adolescents with cancer. To help address this issue, the Centers for Disease Control and Prevention (CDC) convened a series of webinars to identify salient issues and measures to address this problem. This supplement is intended to raise awareness about the unique challenges of clinical trial enrollment among adolescents with cancer. METHODS: The CDC convened a workgroup of researchers and health care providers in the field of adolescent and young adult oncology and cancer survivorship to examine the barriers and challenges limiting the participation of adolescents in clinical trials and to define ways to improve on these concerns. RESULTS: The workgroup identified 3 distinct issues affecting clinical trial enrollment among adolescents with cancer: (1) many adolescents with cancer are not referred to institutions where clinical trials are offered, (2) there are limited numbers of clinical trials for adolescents with cancer, and (3) psychosocial barriers impede adolescents with cancer from enrolling in clinical trials. CONCLUSIONS: Adolescents with cancer have the smallest proportion and least number of patients enrolled in clinical trials in pediatric oncology. Successfully addressing this challenge requires improving referral to existing clinical trials, addressing regulatory barriers to clinical trial enrollment, increasing the number of clinical trials for adolescents, and addressing unique psychosocial barriers to clinical trial enrollment.