Adolescent Young Adults Research Articles

Parental Perspectives on a Behavioral Health Music Intervention for Adolescent/Young Adult Resilience During Cancer Treatment: Report From the Children's Oncology Group

This article describes parental perspectives on the helpfulness and meaningfulness of a behavioral health music therapy intervention targeted to adolescents/young adults (AYA) with cancer undergoing stem cell transplantation. We demonstrate how qualitative methods may be used to understand critical aspects of an intervention and mechanisms by which the intervention impacts the target AYA outcomes of resilience and quality of life. A qualitative descriptive design was used to obtain parents' perspectives. A maximum-variation purposive sampling technique was used to sample 16 parents whose AYA had been randomized to the intervention group. A semistructured open-ended interview was conducted between 100 and 160 days after the AYA's transplant. Results were grouped into three categories: (1) helpfulness and meaningfulness of the intervention to AYA adjustment to the transplantation experience; (2) helpfulness and meaningfulness of the intervention for parents; and (3) AYA ability to participate in the intervention during the acute phase of transplant. Parents observed and interacted with their AYA who participated in a targeted behavioral intervention. Thus, parents were able to describe mechanisms through which the intervention was helpful and meaningful for the AYA and indirect personal benefits for themselves. The results suggest the importance of the targeted outcomes identified in the Resilience in Illness Model and mechanisms of action in the Contextual Support Model of Music Therapy, and identify approaches for future study.

Sexual side effects (SSE) reported by adolescent/young adult (AYA) versus older cancer survivors.

9120 Background: AYA survivors may experience unique SSE compared to older survivors, and these may be difficult to measure. This Internet based study evaluates patient-reported SSE during cancer survivorship. Methods: Data were gathered via a convenience sample frame from cancer survivors voluntarily utilizing a publically available, free, Internet-based tool for creation of survivorship care plans. Available at www.livestrongcareplan.com and through the OncoLink website, it provides customized guidelines for survivor care. During use of the tool, survivors are queried regarding late effects for which they are at risk. All data have been maintained with IRB approval. Results: 3222 cancer survivors answered queries regarding SSE - 392 AYA and 2830 older survivors. Median age of AYA survivors was 30 (range 18–35; median diagnosis age 27). Median age of older survivors was 54 (range 36–93, median diagnosis age 50). AYA survivors were 70% female and older were 76% female. In the AYA cohort, most common cancer diagnoses were hematologic (30%), breast (25%), and genitourinary (GU) (18%), compared to breast (44%), gastrointestinal (11%), and GU (10%) in the older cohort. Among males, erectile dysfunction (ED) was reported by 7% of AYA and 33% of older survivors. Of these, 86% and 94%, respectively, reported no ED prior to treatment; 14% and 93%, respectively, reported that they had not maintained an erection until completion of intercourse since cancer treatment, and 23% and 15%, respectively, reported that they could do so about 50% of the time. Retrograde/dry ejaculation was reported by 53% of AYA and 23% of older survivors. Among females, sexual concerns such as vaginal dryness and shrinkage were reported by 47% of AYA and 59% of older survivors. Conclusions: Male and female cancer survivors using this tool report significant SSE after cancer treatment. SSE reported by AYA versus older male survivors differ, with AYA survivors reporting more retrograde/dry ejaculation and older survivors reporting more ED. SSE appear prominent among female survivors of all ages. This tool offers a unique way for survivors to report their experiences; the data reported here may be of significant impact in future patient counseling and survivor care.

Screening for cancer in children, adolescents, and young adults

Cancer screening interventions offer the potential for both risk and benefit. Research related to screening and cancer in children or adolescents/young adults (AYA) can approach any of several questions. One question to be addressed is whether population-based screening tests can be developed that would reduce incidence or mortality from cancer in children or AYA without causing undue risk to the healthy population and with reasonable cost-effectiveness. This has not yet proven to be possible, and some of the relevant considerations are discussed in this article. The second question concerns the use of screening tests commonly applied to the general population and the special considerations when applied in the context of children/AYA with cancer or of adult survivors. Finally, a third general area of research concerns the inclusion of specialized screening in the follow-up of survivors of cancer in children and AYA to address the potential for recurrences, new primaries, and long-term sequelae of treatment. Although current guidelines for screening in follow-up are derived from a blend of evidence and expert clinical opinion, it is likely that future guidelines will evolve as a result of clinically intense research that takes into consideration the needs of this very unique group.

Trailblazers in Adolescent and Young Adult Oncology.

The development of adolescent and young adult (AYA) oncology as a burgeoning discipline that is now into its own adolescence may be best illustrated by the surge in AYA oncology publications in peer-reviewed journals during the past three years. Prior to 2007, the number of articles identified by the search term ‘‘adolescents young adults cancer’’ in the PubMed database ranged from 129 to 381 per year. Since then, the number increased to 598 in 2007, 1971 in 2008, and 4045 in 2009. The dramatic increase is still well short of the 7000–7500 articles per year that the ‘‘children cancer’’ search term identifies, especially when one considers that the number of cancer patients in the AYA age group is four to six times greater, depending on what age range is used for the AYA group. Nonetheless, the change in publication rate of AYA cancer reports and reviews is striking testimony of need and partial success. To understand the history that led to this revolution, several of its pioneers in England, the United States, and Canada were convened for a roundtable discussion to offer their recall. As described below, the original seed appears to have been sowed in England, thanks to Ian Lewis and London’s Teenage Cancer Trust. A root took hold a decade later when national statistics in the United States showed a survival progress gap that was analogized to the famous London Tube gap between the platform and the Underground train. The stems that then broke ground were conferences, organizations, hospital and outpatient programs, scientific reviews, and international collaborations. The participants in this Roundtable undoubtedly neglected many other events along the way, but they are all appreciative of the emerging buds and blossoms of AYA oncology. Most of all, they sense that AYAs around the world will ultimately truly benefit in improved prevention, early detection, and treatment of cancer during the prime of their lives.

Adolescent's television watching and young adults BMI and blood pressure: A longitudinal study

line WC was identified as a predictor of improved WC when preliminary multivariate analysis was undertaken. Conclusion: Tertiary education and increased baseline WC were strong predictors of improved WC directly after the GCC®, however only increased baseline WC was identified as a strong predictor of sustained WC improvement. It will be important to take predictors of success into account when designing and implementing health programs in the workplace. Conflict of interest: None. Funding: The Heart Disease and Diabetes Prevention Centre and the Australian Research Council for partially funded this study. Dr. Anna Peeters is funded by a VicHealth Public Health Fellowship.

Adolescents & young adults: Issues in transition from active therapy into follow-up care

Purpose The development of services focused on addressing the needs of Adolescent & Young Adult (AYA) cancer patients as they transition from active therapy into follow-up care is an area of growth, development and research across the globe. This is important as much of the empirical literature and service development to date has focused on children or older adults. In Victoria, Australia, as elsewhere, survivorship studies focusing on the AYA age group are needed to answer questions regarding their medical, psychological and social needs. This article examines the qualitative exploration of the findings of a small focus group study with young people and the subsequent development of a practice framework by the onTrac@PeterMac Victorian Adolescent & Young Adult Cancer Service. Method Eight young people, with a mean age at diagnosis of 24 years and 8 months, participated in a 3 h focus group. A qualitative analytic approach was utilized to examine themes. Key results The participants identified a number of survivorship concerns relating to three broad categories: finishing treatment, ongoing health concerns and future directions. Conclusions The research findings supported the development of a practice framework designed to assist in the management of AYA living with cancer in Victoria. Results also supported previously documented evidence that indicate gaps in cancer knowledge and services provided to this age group. Further collaborative research is required to understand AYA treatment and survivorship issues to assist in the development of more formalised aged appropriate protocols.

Exercise Gaming During Hospitalization for Pediatric And Adolescent/Young Adult (AYA) Patients Undergoing Hematopoietic Stem Cell Transplant (HSCT)

The treatment of childhood malignancies with hematopoietic stem cell transplant (HSCT) is potentially curative. However, the procedure can detrimentally affect a patient's overall well being. The literature demonstrates that one week post HSCT, distress and anxiety peak and physical activity significantly decreases. These changes may be more profound in pediatric and adolescent/young adult (AYA) patients that require reverse isolation. Together, these changes can lead to persistent fatigue, physical deconditioning and reduced ability to engage in activities of daily living. Emerging literature suggests that engaging in physical exercise during admission for HSCT can stabilize a patient's current level of physical performance, prevent further decreases in performance status, improve mood and enhance overall quality of life. With this knowledge, it is imperative that supportive care measures be developed that will counter these negative effects of treatment. We propose that participation in a developmentally appropriate physical activity program throughout hospitalization for HSCT can decrease patient distress and anxiety and maintain their physical performance capacity. Exercise equipment using video gaming technology (Play Station exercise game bikes, dance pads and Nintendo Wii's) to encourage compliance will be provided to pediatric and AYA patients, ages 7–25, hospitalized for HSCT. Patients will be asked to exercise a minimum of 4 days/week for at least 20 minutes/day during their hospitalization. Adherence to the program, use of the equipment and a quality of life measure, the Behavioral, Affective and Somatic Experiences Scale (BASES), will be assessed before transplantation and then weekly during admission. Performance status measures (six-minute walk test and Timed Up and Go) will be administered at admission and prior to discharge. We hypothesize that use of exercise/gaming devices will maintain current performance status and lead to an improved quality of life in these patients. The treatment of childhood malignancies with hematopoietic stem cell transplant (HSCT) is potentially curative. However, the procedure can detrimentally affect a patient's overall well being. The literature demonstrates that one week post HSCT, distress and anxiety peak and physical activity significantly decreases. These changes may be more profound in pediatric and adolescent/young adult (AYA) patients that require reverse isolation. Together, these changes can lead to persistent fatigue, physical deconditioning and reduced ability to engage in activities of daily living. Emerging literature suggests that engaging in physical exercise during admission for HSCT can stabilize a patient's current level of physical performance, prevent further decreases in performance status, improve mood and enhance overall quality of life. With this knowledge, it is imperative that supportive care measures be developed that will counter these negative effects of treatment. We propose that participation in a developmentally appropriate physical activity program throughout hospitalization for HSCT can decrease patient distress and anxiety and maintain their physical performance capacity. Exercise equipment using video gaming technology (Play Station exercise game bikes, dance pads and Nintendo Wii's) to encourage compliance will be provided to pediatric and AYA patients, ages 7–25, hospitalized for HSCT. Patients will be asked to exercise a minimum of 4 days/week for at least 20 minutes/day during their hospitalization. Adherence to the program, use of the equipment and a quality of life measure, the Behavioral, Affective and Somatic Experiences Scale (BASES), will be assessed before transplantation and then weekly during admission. Performance status measures (six-minute walk test and Timed Up and Go) will be administered at admission and prior to discharge. We hypothesize that use of exercise/gaming devices will maintain current performance status and lead to an improved quality of life in these patients.

Young Adults with Acute Lymphoblastic Leukemia (ALL) Treated with Adapted Augmented Berlin-Frankfurt-Munster (ABFM) Therapy

The survival of teen-aged patients (pts) with acute lymphoblastic leukemia (ALL) has been analyzed by various groups, with most groups showing improved survival for these pts using pediatric ALL regimens compared to adult treatment regimens. ABFM therapy is an effective therapy for ALL pts up to age 21 and the therapy has acceptable toxicities. We designed a trial of modified ABFM therapy for adolescent/young adults (AYA) up to age 40 with acute lymphoblastic leukemia. Enrollment on the trial began in October 2006. Pts receive four drug induction with prednisone 60 mg/m2 daily for 28 days, daunorubicin 25 mg/m2 weekly for 4 doses, vincristine 2 mg weekly for 4 doses and a single dose of intravenous PEG-asparaginase in week one as well as intrathecal (IT) cytarabine on day one and IT methotrexate on day 8 and 29 depending on the presence of spinal fluid blasts. Induction is extended by two weeks for pts who do not achieve morphologic remission by day 29. Pts who have a morphologic remission by day 15 are classified as rapid early responders, and they receive one phase of delayed intensification. Patients who do not achieve morphologic remission by day 15 but who attain morphologic remission by day 29 or day 42 are slow early responders. Compared to preceding high risk ALL therapy in children, the first year of ABFM treatment uses more vincristine, asparaginase and intravenous methotrexate. As per prior pediatric protocols, central nervous system (CNS) radiation is recommended for pts with CNS involvement at diagnosis and for pts with T-cell ALL and a high presenting white blood cell count. 34 pts have been enrolled. 29 are evaluable (2 with prior relapse, 2 with lymphoblastic lymphoma, and 1 withdrew on day 1 of therapy). The median age is 20 years (range 14–34). 27 (90%) pts are in remission at day 28. Two pts are in remission with extended induction. One pt is refractory to induction. 26 (87%) have rapid early responses by marrow morphology. Minimal residual disease (MRD) testing shows 15/29 positive at day 15, 10/29 positive at day 29, and 3/24 positive at day 84. The most frequent grade 3–4 toxicities are infectious in 19 (65%), elevated transaminases in 17 (58%) patients, hyperglycemia in 13 (44%), and hyperbilirubinemia in 9 (31%). 7 (25%) have Grade 3–4 thrombosis or fatigue. Less frequent but significant toxicities include leukoencephalopathy, osteonecrosis and severe allergic reactions each seen in 3 (10%) pts. One pt had a prolonged delay in chemotherapy due to liver toxicity and relapsed. One pt has CNS relapse, and two have died of leukemia. ABFM therapy in young adults is an effective induction regimen but entails significant hepatic and infectious toxicities. The majority of these toxicities have resolved. Long-term follow-up is needed to determine if this treatment regimen offers an advantage to AYA patients with ALL.

Adolescents' and Young Adults' Expectations of Parental Responsibilities in Stepfamilies

This current study investigates adolescents' and young adults' expectations of parenting by mothers following remarriage. Based on an earlier qualitative study of parent-child relationships, it was hypothesized that young people expect parents to maintain parenting responsibilities, including warmth/support and discipline behaviors, towards children following remarriage. It was also hypothesized that adolescents and young adults expect parents to give them priority relative to the stepparent. Sixty-five participants between the ages of 18 and 25 completed a questionnaire that included a stepfamily vignette and 4 questions designed to elicit expectations of how mothers behave following remarriage. The results partially support each of the hypotheses. The majority of participants saw the mother as having primary responsibility for disciplining children. Approximately half of the participants thought that the mother ought to give priority to children, while the other half thought that she ought to give priority to both the children and her partner. The participants also confirmed that warmth and support roles are important following remarriage, suggesting that children will want love, reassurance, support, time, and attention from the mother. The results suggest that young people may hold a conservative view of family relations following remarriage, expecting the biological parent to maintain primary responsibility for the children and the stepparent to play a more minor role.

Intraabdominal desmoplastic small round cell tumour

Desmoplastic small round cell tumour (DSRCT) is an extremely rare neoplasm. Adolescent males and young adults are most frequently affected. It is highly malignant, with only 29% of patients surviving up to 3 years. This paper documents two cases, one of which, at 4 years old, is the second youngest case documented. Case 1, a 10-year old boy, presented with a 20-day history of choluria, acholia, asthenia, anorexia, and right abdominal pain. Laboratory values were altered, and imaging showed multiples masses in the liver and retroperitoneum. A minilaparotomy was carried out, and a biopsy showed a stage III DSRCT. He was treated with chemotherapy but died of hepatic failure. Case 2, a 4-year-old boy, presented with a 2-month history of abdominal distension. Several hard masses were palpated in the abdomen, and a right inguinal mass that compressed the right testis was observed. Biopsy of the inguinal tumour showed a DSRCT. After treatment with chemotherapy, two operations were carried out to resect different intraabdominal masses. The patient died with peritoneal carcinomatosis 2 months after the last operation. The first patient died due to the advanced stage of the disease, and the second died after chemotherapy, peripheral blood stem transplantation, and multiple operations. The occurrence of this type of tumour in the paediatric age group as well as its high malignancy is noteworthy. Until more effective forms of treatment are found, we recommend treatment with chemotherapy, surgery, and radiotherapy, with close monitoring of the patient.

Adolescents' and Young Adults' Perspectives on a Continuum of Care in a Three Year Drug Treatment Program

Recent discussion in the adolescent treatment community has centered on the therapeutic merits of continuum of care treatment for adolescent and young adult substance abusing populations. However, despite this discussion, few studies to date have actually looked at how adolescents and young adults view continuum of care treatment in practice. In this paper a continuum of care offered within a single treatment approach will be addressed from the perspectives of youths participating in treatment at a three year step-down therapeutic community program with four distinct levels of care: residential treatment, intensive day treatment, day treatment with work/school release, and ambulatory meetings. Adolescents and young adults attending this program must complete all four levels of care before they are eligible for program graduation. Data from 53 qualitative semistructured and open-ended interviews (conducted with 45 adolescents and young adults) indicate that treatment experiences were marked by significant program transition points, during which clients stepped down from one level of care to another. Adolescents and young adults reported experiencing distress at and during these transition points. However, they also indicated that overall emotional and psychological stress was minimized due to the following: (1) these transitions were experienced within a single program structure, (2) youths transitioned through a continuum of care with program peers and friends, and (3) the program staff was perceived by adolescents and young adults to be compassionate and encouraging.

Family Background, Individual and Environmental Influences, Aspirations and Young Adults' Educational Attainment: A follow-up study

In this follow-up study of an earlier investigation (Marjoribanks, 2002a), relationships were examined between adolescents' educational aspirations and young adults' educational attainment, after taking into account measures of family background, individual characteristics and proximal learning settings. Data were collected as part of a longitudinal survey of Australian youth (3772 females and 3476 males). The findings from the two analyses suggest that: (a) family background, individual characteristics and proximal learning settings combine to have large associations with adolescents' aspirations, and these aspirations have the largest relationship with young adults' eventual educational attainment; and (b) there are ethnic group differences in the linear and curvilinear nature of relationships involving measures of individual characteristics, adolescents' educational aspirations and young adults' educational attainment. An 'aspiration 2 attainment 2 background' model is proposed to examine the ongoing and different interactions between aspirations and academic outcomes for students from various family backgrounds.

Frontal lobe‐dependent functions in treated phenylketonuria: Blood phenylalanine concentrations and long‐term deficits in adolescents young adults

Even early-treated phenylketonurics may suffer from phenylalanine-related deficits. Elevated phenylalanine concentrations can interfere with the development and function of the CNS. Outcome beyond childhood has not been extensively investigated. This long-term study was performed to determine whether adolescents and young adults with PKU show frontal lobe-dependent deficits when compared to diabetic patients. The comparative study covered 35 PKU patients, 13-21 years of age (mean 17.8 years), and 35 diabetic patients matched for sex, age and socioeconomic status. Patients were assessed for IQ (Culture Fair Intelligence Test), information processing (Trail Making Test), and selective and sustained attention (Stroop Task, Test d-2). Assessments were repeated within a 3-year follow-up. PKU patients showed no increase in blood phenylalanine concentrations at follow-up. They had significantly poorer test results than the diabetic patients at both assessment times. Within the tests, however, this was due to reduced performance speed but not to deficits in specific frontal lobe-dependent functions. Elevated phenylalanine concentrations seem to exert a global effect slowing performance speed. This effect is enduring in adolescence and early adulthood.

The individuation process from a social-cognitive perspective in kibbutz adolescents

This study explores the individuation process, from a social-cognitive perspective, among kibbutz adolescents and youth. Individuation is defined as the separation of the self from the family. The individuation interview, Selman's self-awareness measure, and the Lunzer test were administered to 4th, 7th, and 10th grades, and to a post-high school group (N=61). Results confirmed age increases in individuation as follows: Late childhood subjects, consolidating on Level 1, exhibit identification with parental views while individual perspectives are secondary. Early adolescents, on Level 2, demonstrate increased self-awareness and the beginning of a decline of the parental view. Midadolescents, on Level 3, are characterized by the prominance of their self-system while the parental view becomes secondary. Late adolescents (young adults), on Level 4, show an ability to integrate the parental view within the self-system without loss of individuality. Furthermore, construct validation confirms the common as well as the discriminant qualities of the individuation sequence to self-awareness and Piagetian logical development. These results support the developmental sequence of the individuation construct in the kibbutz adolescent and fit the individuation model (Mazor, 1985) in a cross-cultural perspective.

The vocational development of emotionally disturbed young adults in a community setting

Although the potential benefits are significant, few programs emphasize the vocational rehabilitation of the severely disturbed adolescent-young adult. The philosophical constructs as well as the major operational components of one such program are presented. The complex problems that impede this population's ability to work successfully in the community are explored. Emotionally disturbed adolescents-young adults are accustomed to failure and their behavior is frequently self-defeating. Community resistance and professional conservatism may limit their work options. The program's experience has demonstrated that if disturbed youths are provided the opportunity to work in a natural community setting, they will frequently surpass formal diagnostic evaluations of their capacities. The therapeutic gains realized by the disturbed individual who works successfully in his or her community are considered.