Young Adult Cancer Patients Research Articles

The relationship between posttraumatic stress and posttraumatic growth among adolescent and young adult (AYA) cancer patients.

Theories of posttraumatic growth suggest that some degree of distress is necessary to stimulate growth; yet, investigations of the relationship between stress and growth following trauma are mixed. This study aims to understand the relationship between posttraumatic stress symptoms and posttraumatic growth in adolescent and young adult (AYA) cancer patients. 165 AYA patients aged 14-39 years at diagnosis completed standardized measures of posttraumatic stress and posttraumatic growth at 12 months following diagnosis. Locally weighted scatterplot smoothing and regression were used to examine linear and curvilinear relationships between posttraumatic stress and posttraumatic growth. No significant relationships between overall posttraumatic stress severity and posttraumatic growth were observed at 12-month follow-up. However, curvilinear relationships between re-experiencing (a posttraumatic stress symptom) and two of five posttraumatic growth indicators (New Possibilities, Personal Strengths) were observed. Findings suggest that re-experiencing is associated with some aspects of posttraumatic growth but not others. Although re-experiencing is considered a symptom of posttraumatic stress disorder, it also may represent a cognitive process necessary to achieve personal growth for AYAs. Findings call into question the supposed psychopathological nature of re-experiencing and suggest that re-experiencing, as a cognitive process, may be psychologically adaptive. Opportunities to engage family, friends, cancer survivors, or health care professionals in frank discussions about fears, worries, or concerns may help AYAs re-experience cancer in a way that enhances their understanding of what happened to them and contributes to positive adaptation to life after cancer.

Comparison of Radioiodine Utilization in Adolescent and Young Adult and Older Thyroid Cancer Patients

Differentiated thyroid cancer (DTC) is 1 of the most common cancers in adolescents and young adults (AYA, ages 15-39). Although most AYAs with DTC are considered low risk compared to older patients, there are no specific postoperative radioiodine (RAI) treatment recommendations despite the potential adverse effects specific to this age group, namely secondary malignancies and fertility difficulties. This study compares factors influencing RAI utilization in AYA and older patients. A total of 5,687 primary DTC patients were identified from the SEER (Surveillance, Epidemiology, and End RESULTS) database between January 1, 2004 and January 31, 2009. The 2009 American Thyroid Association (ATA) guidelines were used to classify patients as low (LR) or intermediate/high risk (IHR) based on tumor characteristics. Multivariate logistic regression analysis was performed. Overall, 56.9% of AYA (n = 1,963) patients received postoperative RAI compared to 52.2% of older (n = 3,724) patients (odds ratio [OR]: 1.21, 95% confidence interval [CI]: 1.09-1.35, P = .001). For AYA patients, having a total thyroidectomy (TTx) (OR: 3.53, 95% CI: 2.7-4.61, P<.001) predicted RAI in a multivariate model whereas LR status (OR: 0.52, 95% CI: 0.43-0.63, P<.001) and northeast residence (OR: 0.39, 95% CI: 0.29-0.52, P<.001) decreased the probability. All 3 factors similarly affected older patients in addition to an increased likelihood after lymph node (LN) dissection. Additionally, after selecting for TTx (n = 1,077), no factor influenced the use of RAI for AYA patients, whereas LR (OR: 0.30, 95% CI: 0.21-0.43, P<.001) and northeast residence (OR: 0.39, 95% CI: 0.19-0.79, P = .008) were associated with decreased RAI use in older patients. Despite their excellent prognosis, AYA thyroid cancer patients are more likely to receive postoperative RAI compared to older patients. Increased awareness of the unique survivorship implications for AYA patients will be an important aspect to address going forward.

Psychological distress and unsatisfied need for psychosocial support in adolescent and young adult cancer patients during the first year following diagnosis

Identifying at-risk adolescent and young adult (AYA) cancer patients and referring them to age-appropriate psychosocial support services may be instrumental in reducing psychological distress and promoting psychosocial adaptation. The purpose of this study is to identify trajectories of clinically significant levels of distress throughout the first year following diagnosis and to distinguish factors, including supportive care service use, that predict the extent to which AYAs report distress. In this prospective multisite study, 215 AYAs aged 15-39 years were assessed for psychological distress and psychosocial support service use within the first 4 months of diagnosis and again 6 and 12 months later. On the basis of distress scores, respondents were assigned to one of four distress trajectory groups (Resilient, Recovery, Delayed, and Chronic). Multiple logistic regression analyses examined whether demographics, clinical variables, and reports of unsatisfied need for psychosocial support were associated with distress trajectories over 1 year. Twelve percent of AYAs reported clinically significant chronic distress throughout the first 12 months following diagnosis. An additional 15% reported delayed distress. Substantial proportions of AYAs reported that needs for information (57%), counseling (41%), and practical support (39%) remained unsatisfied at 12 months following diagnosis. Not getting counseling needs met, particularly with regard to professional mental health services, was observed to be significantly associated with distress over time. Substantial proportions of AYAs are not utilizing psychosocial support services. Findings suggest the importance of identifying psychologically distressed AYAs and addressing their needs for mental health counseling throughout a continuum of care.

Geographical Factors Affecting the Admission of Teenagers and Young Adults to Age-Specialist Inpatient Cancer Care in England

Purpose: Little is known about the factors that influence the place of inpatient care for teenage and young adult (TYA) cancer patients. Recent guidelines have recommended centralization of care for this group to a small number of specialized centers. This study aimed to investigate the influence of geography and travel times on the likelihood of admission to an age-specialist center in England during cancer treatment for patients aged 15-24 at the time of diagnosis. Methods: Data for 6788 patients aged 15-24, diagnosed between 2001 and 2006 and treated as an inpatient in England between 2001 and 2009, were obtained from the National Cancer Data Repository. Eight TYA age-specialist centers were identified in England during this time period; road travel times to these centers were calculated using ArcGIS Network Analyst. Factors thought to affect the likelihood of admission, such as diagnostic group, gender, and age at diagnosis were modeled using logistic regression. Results: Overall, 66.9% of patients never received inpatient treatment at a TYA age-specialist center during the course of their treatment. Increasing travel time significantly reduced the likelihood of admission to a TYA age-specialist center after adjustment for case mix factors. Conclusion: Many TYA patients received little or no inpatient treatment at a TYA age-specialist center during their treatment. The variation between diagnostic groups suggests that factors other than distance to the closest center are affecting the likelihood of admission and demonstrates the potential need to consider improvements to the structured referral practice for this unique group of patients.

Advocates, Not Problem Parents

Advocates, Not Problem Parents Anonymous Two Nothing could have prepared us for the shock of hearing that our son had a brain tumor. Rob* was 13½, an active, healthy eighth grader, when he developed a headache so bad he couldn’t get out of bed in the morning. We saw the pediatrician three times over the next ten days. On the third visit, after ruling out problems at home, stress at school, strep throat and mono, he sent us for an MRI. When the radiology tech handed me the films and told us to drive back to the pediatrician’s office, I knew we were in trouble. Sure enough, after all the other patients had left, our long–time doctor called us into his tiny office, shut the door and fumbled with the films as he pointed to a white spot that he said was a brain tumor. So began the experience that would change the course of our lives. We remember the diagnosis in detail and relive it in slow motion. We recall packing suitcases, driving to the hospital, waiting to be seen in the emergency room, and walking through doors marked “Pediatric Hematology/Oncology” for the first time. We date everything “BC” (Before Cancer) or “AD” (After Diagnosis). We are grateful every day that [End Page 13] our son is alive, but we know he is forever changed. We are changed: Our nuclear family, our extended family, everyone who knew us and supported us at the time was affected. A pediatric cancer diagnosis is a bomb that shatters your world without warning. If you’re lucky, you can pick up a lot of the pieces, maybe even most of them, but the world you re–enter is never the one you inhabited before. Our doctor delivered the diagnosis to Rob and me at the same time. I’ve thought about this many times and perhaps one day will ask him: Why did he choose to do it that way? Was it a conscious decision or just happenstance? Was it kinder, in the long run—like pulling off a band–aid quickly—or terribly risky? What if I had collapsed at the news? I asked to step into the hall to use the phone. In a state of numbness, I called my husband. He knew we had had an MRI a few hours earlier. “Come quickly,” I said. “There’s a mass.” We chose to go to a top-ranked major medical center and were admitted that evening. A couple of days later, the discovery of tumor markers in Rob’s cerebrospinal fluid and blood confirmed a central nervous system mixed germ cell tumor. We were told he would require six cycles of chemotherapy, followed by six weeks of radiation, and possibly second–look surgery and high-dose chemo with stem cell rescue on top of that. We were given a consent form listing a catalogue of short–and long–term side effects, among them the likelihood of infertility. We were urged to start treatment as soon as possible. By sheer coincidence I had just completed a project for a small, nonprofit organization that existed to inform young adult cancer patients about their fertility rights and options. I knew that infertility concerns were usually pushed aside at diagnosis to make way for other priorities, namely the urgency of starting treatment. And that’s exactly the kind of pressure we were facing. But my husband and I were not ready to sign away our son’s fertility in what felt like a no–confidence vote, a capitulation. We needed to believe that he would survive and put this horror behind him, that he would look forward to marriage and starting a family. We were willing to cede nothing to the disease at this early stage of the game. Was this rational, naive or selfish on our part? I don’t know. The medical team seemed surprised when we asked for a delay in treatment in order to collect sperm samples. They warned that our son’s condition could decline suddenly—and that postponing treatment by even several days might be dangerous. However, at our insistence, they agreed to the delay...

Gender-specific quality of life after cancer in young adulthood: a comparison with the general population

Over the last years, adolescents and young adults with cancer (AYA) have moved strongly into scientific focus. However, there have only been a few studies about the quality of life of the AYA group, and gender differences have very rarely been examined. A cross-sectional study was conducted with young adult cancer patients who were aged 18-39 years at the time of survey and had completed their acute treatment. We used the quality of life questionnaire European Organization for the Research and Treatment of Cancer Quality of Life Questionnaire-Core 30 (EORTC QLQ-C30). The EORTC QLQ-C30 contains five function scales (physical, role, emotional, cognitive and social), nine symptom scales and a global quality of life scale. The patient sample was compared to a gender- and age-matched representative sample (REP). Compared to the general population (N = 585), significantly poorer quality of life (p = .001) was observed for the 117 young cancer patients (40 male, 77 female) on all scales and items of the EORTC QLQ-C30. Analyses of variance with the factors group (AYA vs. REP) and gender showed interaction effects for the physical (p < .012), emotional (p < .029) and cognitive function scales (p < .008) and fatigue (p < .026) as well as for the items insomnia (p < .011), constipation (p < .037) and financial difficulties (p < .026). The pattern of the interaction was that female cancer patients reported the lowest quality of life outcomes. The same effects were found for the three calculated sum scales function, symptom and total. Results clearly indicate that young adult cancer patients have a reduced quality of life in comparison with the general population even long after the treatment of their disease is complete. Women had a lower quality of life than men. Age-specific interventions should be offered that lead to improvements in quality of life for this age group. And future studies should clarify what factors lead to women's quality of life being worse than men's.

The Experience of Young Adult Cancer Patients Described Through Online Narratives

Young adults are often faced with challenges related to relationships, employment, housing, and emotional development. Experiencing cancer during this time complicates the developmental processes and creates a need for communicating concerns and discussing issues. The purpose of this study was to explore the experiences and gain a better understanding of young adults affected by cancer (YAACs) by examining their online narratives (also known as Web logs or blogs). Inclusion and exclusion criteria were used to identify eligible Web sites. The Web site that most corresponded to the selection criteria was chosen for analysis (Planet Cancer, http://www.planetcancer.org/). The blog content generated in July 2011 was collected. The blogs were written by a total of 34 female and 12 male writers and included 136 (by female) and 28 (by male) blog entries. Researchers conducted a descriptive qualitative examination of blogs to explore YAACs' experiences during/after cancer. At the end of the data analysis process, 10 main themes were identified: physical burdens, future prospects, isolation (physical and psychological), guilt, mortality, images of cancer, creating a positive attitude, healthcare, online social interaction, and cancer survivorship. The Internet provides young cancer patients with a space in which to express themselves and to share experiences with those who are of similar age and in similar situations. Blogs can be particularly helpful when patients are isolated or physically unable to interact with other people because of treatment requirements or physical deterioration.Future studies should investigate other types of Internet cancer communities and how they can benefit the development of Internet-based support networks for YAACs.

PC-FACS

PC-FACS

Characteristics of clinical trials for adolescent and young adult (AYA) cancer patients (pts) in Ontario.

e17525 Background: Outcomes of pediatric and adult cancer pts have improved more than outcomes of AYA pts. Reduced access of AYA pts to clinical trials may partially account for this. Methods: The 10 cancers of highest annual incidence for pts ages 15-29 were identified using the 2005-09 SEER data base and searched on ClinicalTrials.gov (2012/OCT/27) using restriction terms “recruiting”, “intervention studies”, “Canada-Ontario”, and “Adult (18-65)”. Among trials identified, variables compared were sponsor (industry; not industry), intent (curative; palliative; other), endpoints (survival; disease control-adverse event; other), previous therapy (none; other), age (max &lt; 29; max&gt;29 but &lt;50; max&gt;50), intervention (drug; RT+/-drug; other) and randomized design (yes; no). Comparisons used a 2-tailed Fisher’s exact test. Results: We identified 139 trials, including (incidence rank order in bracket): breast-41 (8), non Hodgkin’s lymphoma-36 (4), CNS-30 (6) and acute lymphoblastic leukemia (ALL)-21[10]. There were 45 trials available for the other 6 indications; some trials permitted multiple indications. Most common features were non-industry sponsorship (58%), palliative intent (65%), disease control-adverse event primary endpoint (82%), not restricted to 1st line therapy (76%), max age&gt;50 (69%), drug-only intervention (78%) and non-randomized design (56%). Among all trials, those with an age restriction did not significantly differ from trials with an age maximum of &gt;50. Industry sponsorship was associated with fewer non-drug-only trials (2% vs. 36%; p&lt;0.0001), curative trials (12% vs. 41%; p=0.0002) and age-restricted trials (10% vs. 48%; p&lt;0.0001). CNS and ALL trials were more likely to restrict age eligibility (60% vs. 13%; p&lt;0.0001 for CNS; 52% vs. 18%; p&lt;0.0001 for ALL) and have non-industry sponsorship (90% vs. 49%; p&lt;0.0001 for CNS; 76% vs. 24%; p=0.09 for ALL). Conclusions: Availability of clinical trials for Ontario AYA pts is very heterogeneous and no correlation is seen between AYA cancer-type incidence and number of trials. While CNS cancers and ALL appear unique, access and characteristics of trials for other AYA pts appear to relate to determinants associated with older patients.

A national approach to improving adolescent and young adult (AYA) oncology psychosocial care: The development of AYA-specific psychosocial assessment and care tools

Age-based screening tools and assessment measures are crucial to the provision of best practice care for adolescent and young adult (AYA) cancer patients. Unfortunately, there are limited psychosocial tools developed for this age group and pediatric or adult measures are often distributed with the assumption that they are "close enough." We describe a collaborative Australian project that strives to improve what currently exists for the psychosocial assessment of and planning for the 15-25-year-old age group. Using the National Comprehensive Cancer Network's Distress Thermometer and the HEADSS Assessment as a foundation, the tools were developed in consultation with Australia's leading AYA clinicians, AYAs currently undergoing medical treatment, and a group of AYA survivors through a process of discussion groups and clinical interviews. The result is the first available AYA-specific screening tool, care plan pro forma, and psychosocial assessment measure developed for use within the oncology sector. These new tools will assist clinicians working with this population group to support psychosocial coping during active treatment and promote healthy post-treatment survivorship. Over time, further validation procedures will add to the veracity of the measures. Until then, these measures represent the best available in Australia. They highlight a clinically recognized minimum standard of care that all young cancer patients, regardless of treatment location, have the right to receive.

Assessing information and service needs of young adults with cancer at a single institution: the importance of information on cancer diagnosis, fertility preservation, diet, and exercise

Young adults (YA) with cancer have unique psychosocial and medical needs. The objective of this study was to identify information and service needs important to YA cancer patients. A supportive care needs survey was administered to ambulatory patients (<age 35 years) who were within 5 years of completing therapy at an adult hospital. Participants were asked to rate the importance of 18 sources of information or resources on a scale from 1 to 10. The relationship between gender, type of cancer, current treatment status, and marital status on the importance of these factors was explored using ANOVA. Median age of 243 respondents was 28 years (range 17-35); 61% male. The most common diagnoses were: lymphoma (28%), leukemia (19%), testis (16%), CNS (9.5%), and sarcoma (8.6%). Forty percent were currently receiving treatment; the majority were single/never married (67%). Thirty-eight percent of respondents felt it was important or very important to receive care in a dedicated unit with other young people. More than 80% rated the following items at least 8/10 in importance: information on their specific malignancy (treatment, risk of recurrence), effects of treatment on fertility, information on maintaining a healthy diet, and exercise/physical fitness during cancer treatment. Women were more likely to consider information/service needs more important than men. YA's have clear supportive care preferences and needs. Developing programs that incorporate the services identified as important should improve quality of life, psychosocial adjustment, and other outcomes during and after cancer therapy.

Comparing urban and rural young adult cancer survivors' experiences: a qualitative study

Large administrative data set analyses demonstrate that geography has a significant impact on access to health care and subsequent health outcomes. In general, rural populations have poorer access to healthcare services. This article explores the reality of this issue for young adult cancer survivors. Data was of a subset of 30 participants from a larger qualitative study that examined cancer survivorship issues for young adult cancer patients in Canada. The subset of participants are from New Brunswick, a predominantly rural province in Eastern Canada with a population of 750,000 spread out over a large geographical area, and from Canada's largest metropolis center, Greater Toronto Area, with a population of around 6 million. Analysis of the qualitative data using constructivist grounded theory revealed several expected and unexpected differences between the two geographically distinct groups. The rural group of young adult cancer survivors reported more frequent episodes of delayed diagnosis and lower levels of community support compared to the urban participants. The urban young adult cancer survivors discussed out-of-pocket expenses for cancer treatment more often than the rural participants. Many rural participants made it clear that they were keenly aware that not all cancer care services were readily available where they lived, and yet they reported considerably higher levels of satisfaction with the cancer care that they received than the urban participants. Despite the lack of important cancer services in rural areas, rural young adult cancer survivors expressed higher levels of satisfaction with their care than did urban cancer survivors. It appears that levels of satisfaction are related to expectations. Rural participants were aware of the more limited services available and felt that their cancer care practitioners provided the best care possible given the limited resources. Urban participants may have higher expectations of cancer care and felt that the cancer care they received fell below expectations. In the future, researchers may want to focus on cancer care expectations, satisfaction levels and psychosocial outcomes in greater detail.

Exploring the Role of Physical Activity During Palliative Care for Adolescent and Young Adult Cancer Patients

Journal of Adolescent and Young Adult OncologyVol. 2, No. 1 PerspectiveExploring the Role of Physical Activity During Palliative Care for Adolescent and Young Adult Cancer PatientsHillary M. Woodside and Melanie R. KeatsHillary M. WoodsideSchool of Health and Human Performance, Dalhousie University, Halifax, Nova Scotia, Canada.Search for more papers by this author and Melanie R. KeatsSchool of Health and Human Performance, Dalhousie University, Halifax, Nova Scotia, Canada.School of Physiotherapy, Dalhousie University, Halifax, Nova Scotia, Canada.Department of Pediatrics, Dalhousie University, Halifax, Nova Scotia, Canada.Search for more papers by this authorPublished Online:7 Mar 2013https://doi.org/10.1089/jayao.2012.0016AboutSectionsView articleView Full TextPDF/EPUB ToolsPermissionsDownload CitationsTrack CitationsAdd to favorites Back To Publication ShareShare onFacebookTwitterLinked InRedditEmail View articleFiguresReferencesRelatedDetailsCited byUnderstanding the experiences of adolescents and young adults with cancer: A meta-synthesisEuropean Journal of Oncology Nursing, Vol. 24A Feasibility Study to Measure Physical Activity, Fatigue, Sleep–Wake Disturbances, and Depression in Young Adults During Chemotherapy Jeanne M. Erickson, Katharine E. Adelstein, and Lisa C. Letzkus12 March 2014 | Journal of Adolescent and Young Adult Oncology, Vol. 3, No. 1 Volume 2Issue 1Mar 2013 InformationCopyright 2013, Mary Ann Liebert, Inc.To cite this article:Hillary M. Woodside and Melanie R. Keats.Exploring the Role of Physical Activity During Palliative Care for Adolescent and Young Adult Cancer Patients.Journal of Adolescent and Young Adult Oncology.Mar 2013.35-37.http://doi.org/10.1089/jayao.2012.0016Published in Volume: 2 Issue 1: March 7, 2013Online Ahead of Print:December 16, 2012Keywordspalliative carephysical activityquality of lifesupportive caresymptom managementautonomyPDF download

Optimizing Fertility Preservation Practices for Adolescent and Young Adult Cancer Patients

Most adolescents and young adults (AYAs) with cancer will survive their disease, and fertility issues are a major concern for this population. The ASCO and new NCCN Clinical Practice Guidelines in Oncology for Adolescent and Young Adult Oncology recommend that oncologists offer the option of fertility preservation to all postpubertal AYAs before the start of potentially gonadotoxic chemotherapy or radiotherapy, providing that the patient does not require emergent start of therapy. Despite the published practice guidelines, many AYAs diagnosed with cancer are still not offered fertility preservation, with oncologists citing lack of time, lack of knowledge, and discomfort in discussing fertility and sexuality with AYAs as reasons. Developing a systematic and coordinated multidisciplinary strategy for fertility preservation referrals within a practice site may streamline the referral process, off-loading some tasks from the oncologist and potentially increasing patient satisfaction, provider satisfaction, and compliance with the guidelines.

Reproductive health in the adolescent and young adult cancer patient: an innovative training program for oncology nurses.

In 2008, approximately 69,200 adolescents and young adults (AYAs) were diagnosed with cancer, second only to heart disease for males in this age group. Despite recent guidelines from professional organizations and clinical research that AYA oncology patients want information about reproductive health topics and physician support for nurses to address these issues with patients, existing research finds few oncology nurses discuss this topic with patients due to barriers such as lack of training. This article describes an innovative eLearning training program, entitled Educating Nurses about Reproductive Issues in Cancer Healthcare. The threefold purpose of this article is to: (1) highlight major reproductive health concerns relevant to cancer patients, (2) describe the current status of reproductive health and oncology communication and the target audience for the training, and (3) present a systematic approach to curriculum development, including the content analysis and design stages as well as the utilization of feedback from a panel of experts. The resulting 10-week curriculum contains a broad-based approach to reproductive health communication aimed at creating individual- and practice-level change.

The impact of intrapersonal, interpersonal, and community factors on the identity formation of young adults with cancer: a qualitative study

The purpose of this study was to examine how young adult cancer patients make sense of their experiences with cancer. Semi-structured interviews were conducted with patients at an urban tertiary care center The sample for this study included 15 young adult cancer survivors. The ages of the participants ranged from 18 to 30 years. The sample was 67% female (n = 10) and 33% male (n = 5). The sample was 87% Caucasian (n = 13) and 13% Hispanic (n = 2). Fifty-three percent of the participants were between ages 18 and 23 years (n = 8), and 47% of the participants were between ages 24 and 30 years (n = 7). Three themes emerged from the data: intrapersonal change, interpersonal interactions, and role and identity in the hospital and the community. As they inevitably lose control in their lives, young adult patients seek to return to a familiar lifestyle that they consider as 'normal'. The formation of a revised identity and redefined set of norms allows the patients to regain control and express their individualism. This study contributes to our knowledge of the experiences of young adult cancer patients and survivors. The findings serve to inform young adults, caregivers, and health professionals on coping with illness and its aftermath.

The need for reproductive and sexual health discussions with adolescent and young adult cancer patients

Reproductive health consistently ranks as one of the most important issues cited by adolescent and young adult (AYA) cancer survivors. Most literature on AYA cancer populations neglects broader reproductive health issues such as unintended pregnancies, contraception use and sexually transmitted infections, which, for cancer patients and survivors with compromised immune systems, can facilitate a multitude of future health problems. Lack of attention coupled with traditional risk-taking behaviors of AYAs poses a significant health risk to patients and survivors, particularly if fertility status is unknown or inaccurately assessed. AYA oncology patients and survivors are vulnerable to reproductive health complications that should be addressed prior to, during and after treatment; however, there are currently no tracking systems or evidence-based guidelines to discuss this subject with patients and survivors. Further research is needed to identify physician practices, AYA preferences and strategies for communication that can pave the way to establishing guidelines to discuss in oncology settings.

422P - Comparison of Diagnostic and Treatment Delays of Adolescent and Young Adult Brain Tumor Patients with Older Adult Brain Tumor Patients

ABSTRACT Background Adolescent and young adult (AYA) cancer patients are confronted with obstacles and challenges related to their diagnosis and treatment compared to children and older adults. The aim of this study is to compare patient-related and health care system-related delays, from cancer symptom onset to diagnosis and treatment, between the AYA brain tumor patients and older adult brain tumor patients. Material and methods This study is based on a questionnaire conducted in 2010-2012 completed by AYA brain tumor patients diagnosed at the ages between 16 and 39 years and older adult brain tumor patients diagnosed at an average age of 59 years. Total delay (time from cancer symptom onset to treatment start) was calculated and divided into three stages (1) Patient delay: time from patient symptom onset until first health care contact date; (2) Health care system delay: time from first health care contact until diagnosis date; (3) Treatment delay: time from diagnosis date until first treatment. Median delay in days with interquartile interval (IQI) is the main outcome measure. Results For AYA brain tumor patients, we identify a median total delay of 169 (IQI 72-395) days, a median patient delay of 1 (0-78) days, a median health care system delay of 42 (5-203) days and a median treatment delay of 60 (35-92) days. For older adult brain tumor patients, we identify a median total delay of 76 (58-175) days, a median patient delay of 0 (0-14) days, a median health care system delay of 25 (14-42) days and a median treatment delay of 35 (21-63) days. Delays of all stages are longer in AYA brain tumor patients as compared to older adult brain tumor patients, and the findings of total delay and treatment delay are statistically significant (p = 0.013 and p = 0.048, respectively). Conclusions Health care system delay and treatment delay account for much of the delay from symptom onset to first treatment in both groups which indicates professional characteristics of frontline medical personnel may contribute to delay. Also, we have longer delays in AYA brain tumor patients. This suggests that AYA cancer patients as underserved patient population need to get more attention from healthcare professionals and the general community. Disclosure All authors have declared no conflicts of interest.

Psychosocial service use and unmet need among recently diagnosed adolescent and young adult cancer patients

Adolescents and young adults (AYAs) with cancer demonstrate biomedical risks and psychosocial issues distinct from those of children or older adults. In this study, the authors examined and compared the extent to which AYAs treated in pediatric or adult oncology settings reported use of, and unmet need for, psychosocial support services. Within 4 months of initial cancer diagnosis, 215 AYAs ages 14 to 39 years (99 from pediatric care settings and 116 from adult care settings; 75% response rate) were assessed for reporting use of information resources, emotional support services, and practical support services. Statistical analyses derived odds ratios and 95% confidence intervals for service use and unmet needs after controlling for race, employment/school status, sex, relationship status, severity of cancer, treatment, and treatment-related side effects. AYAs ages 20 to 29 years were significantly less likely than teens and older patients ages 30 to 39 years to report using professional mental health services and were significantly more likely to report an unmet need with regard to cancer information, infertility information, and diet/nutrition information. Compared with teens who were treated in pediatric facilities, AYAs who were treated in adult facilities were more likely to report an unmet need for age-appropriate Internet sites, professional mental health services, camp/retreats programs, transportation assistance, and complementary and alternative health services. Substantial proportions of AYAs are not getting their psychosocial care needs met. Bolstering psychosocial support staff and patient referral to community-based social service agencies and reputable Internet resources may enhance care and improve quality of life for AYAs.

Length of stay and treatment‐related complications are similar in pediatric and AYA patients with bone sarcoma in United States children's hospitals

Adolescent and young adult (AYA) cancer patients have been shown to have unique clinical characteristics and inferior outcomes compared to younger patients. More than 2,500 new bone sarcomas are diagnosed yearly in the US, many of whom are AYAs treated at pediatric hospitals. Pediatric providers must understand the impact of increasing age on complications, costs, and outcomes. The study set-out to determine if AYA patients with bone sarcomas have increased healthcare utilization and treatment-related complications as compared to younger patients. Data were obtained from the Pediatric Health Information System for bone sarcoma admissions at 41 US children's hospitals from 2006 to 2010. Patient demographics and morbidities were compared in patients 0-14 and 15-28 years using two sample t-tests, Wilcoxon two sample tests, or chi-squared tests. We identified 835 pediatric and 562 AYA patients with bone sarcomas. Mean length of stay (LOS) was comparable between age groups (4.6 and 4.8 days, P = 0.46), although AYA patients had greater mean pharmaceutical charges ($18,124 vs. $13,637, P < 0.0001). Common treatment-related complications were similar between groups, with the exceptions that febrile neutropenia admissions were more likely in younger patients, and thrombosis, renal failure, and pain were more common in AYA patients. In US children's hospitals, AYA patients with sarcomas do not have prolonged LOS or an increased risk of the most common treatment-related complications as compared to younger patients. Chronic pain appears to be a greater burden in AYA patients, and may account for their higher inpatient pharmaceutical costs.