Journal of adolescent and young adult oncology最新文献

Purpose: A cancer diagnosis can greatly affect adolescents and young adults (AYAs), especially those in their late teens and early twenties, who might have their special needs. This study aimed to understand the experiences of the AYAs who were diagnosed between 15 and 24 years of age in Japan, thinking about the care guide supporting them, from the time of their cancer diagnosis through the rest of their lives. Methods: Data were collected using semi-structured interviews, which were audio recorded and transcribed verbatim. Qualitative analysis of the transcripts was used to categorize these into themes for comprehensive interpretation. Results: Twenty AYAs participated; they were diagnosed between the ages 15 and 23 and were 19-29 years old at the time of the interview. In total, 14 core categories were identified, consisting of three themes (1) There is a feeling of distance between the cancer and me, (2) I face "my cancer" in my way, and (3) I feel that I would be okay with "my cancer." Conclusions: AYAs had their way of dealing with cancer while experiencing a distant feeling between themselves and the presence of the disease during their cancer journey. Although the process was not simple, they tried to live their lives in their own way, believing that they would be okay. Nurses must respect and understand that AYAs have a process of facing their own cancer with time and watch over AYAs' experiences to appropriately support them to successfully proceed further.

Increasing awareness of gonadotoxicity in cancer treatments and infertility risk is essential for counseling young cancer patients. While fertility preservation options are available in many countries, limited data on gonadotoxicity hinder recommendations, especially for soft tissue cancers. This review, part of the FertiTOX project (www.fertitox.com), organized by FertiPROTEKT (www.fertiprotekt.com), aims to address this knowledge gap to improve fertility preservation guidance. We performed a systematic literature search on gonadotoxicity in soft tissue sarcoma (STS) cancer treatments. Only patients without metastases or recurrent disease were considered. "Suspected infertility" was defined based on low ovarian reserve parameters, low inhibin B levels, high gonadotropin concentration, gonadal dysfunction, amenorrhea, oligomenorrhea, azoospermia, or oligozoospermia due to limited infertility data. The study quality was assessed using the Newcastle-Ottawa Scale. The search yielded 3309 abstracts, with 138 undergoing full-text analysis. Eight studies on STS were included. Suspected infertility was observed in 20 of 28 females (71.4%, range 0-100%) and 38 of 63 males (60.3%, range 34.8-100%) with STS. Six of the eight studies received high-quality scores on the NOS, while two received a fair score. Our data suggest a high risk of infertility from chemotherapy in pre- and postpubertal STS survivors. This underscores the importance of considering fertility preservation measures when counseling these patients.

Purpose: This study was conducted to examine the relationship between nursing students' breast cancer (BC) awareness, health beliefs, and BC prevention behaviors. Methods: This study sample consisted of 256 female students. Descriptive Information Form, Breast Cancer Awareness Scale (B-CAS), the Factors Affecting Breast Cancer Prevention Behaviors of Women (FABCPB) Scale, and the Champion's Health Belief Model Scale (CHBMS) were used to collect the data. Results: Breast self-examination was performed in 53.9% of the nursing students. The mean B-CAS score was 1.35 ± 0.58 and the mean FABCPB score was 102.84 ± 9.62. The mean scores of the sub-dimension scores of the CHBMS of nursing students were as sensitivity perception 7.93 ± 2.13, seriousness perception 22.58 ± 5.26, benefit perception 17.25 ± 3.17, obstacle perception 22.89 ± 6.24, confidence 37.71 ± 7.53, and health motivation 26.47 ± 4.41 points. A significant correlation was found between the scores of the nursing students on the B-CAS, FABCPB, and CHBMS scales. Conclusions: Nursing students' scores on the B-CAS and FABCPB were moderate, CHBMS sensitivity and obstacle perception sub-dimension scores were low, severity perception scores were moderate, and benefit perception, trust, and health motivation sub-dimension scores were high. As the BC awareness of nursing students increased, their cancer prevention behaviors and health beliefs increased.

Purpose: This study examines nonsuicidal self-injury (NSSI) in adolescent and emerging adult survivors of childhood cancer, aiming to gain a first understanding of the phenomenon, its relation to general and cancer-specific functioning, and the stability of NSSI engagement over time. Methods: Dutch-speaking survivors (n = 125, age range = 14-25 years) participated in the first three annual waves of the Longitudinal Identity Study of Childhood Cancer Survivors study. Descriptive characteristics of lifetime NSSI were calculated. Multivariate analysis of variance (MANOVA) and χ²-analyses were performed to examine differences in demographic and clinical characteristics between survivors with and without lifetime NSSI. To assess differences in general and cancer-specific functioning between survivors with and without lifetime NSSI, two MANOVA analyses were performed. Finally, prevalence rates of current NSSI across the three waves were calculated, followed by χ²-analyses to explore differences in current NSSI over time. Results: The prevalence and characteristics of lifetime NSSI engagement resembled those in the general population. Although demographic and clinical characteristics were unrelated to NSSI engagement, several meaningful differences were found in both general and cancer-specific functioning between survivors with and without NSSI. Survivors with lifetime NSSI experienced more depressive symptoms and difficulties with identity formation (i.e., lower levels of identity synthesis and higher levels of identity confusion). In addition, they experienced more post-traumatic stress symptoms and cancer-related worries, and identified less as a "cancer patient." Conclusions: This study provides a first understanding of NSSI engagement in survivors of childhood cancer, mapping the characteristics of NSSI and its associations with both general and cancer-specific functioning.

Purpose: Financial hardship as a result of cancer treatment can have a significant and lasting negative impact on adolescents and young adults (AYAs) and their families. To address a lack of developmentally informed and psychometrically sound measures of financial hardship for AYAs and their caregivers, we used rigorous measurement development methods recommended by the National Institutes of Health's Patient-Reported Outcomes Measurement Information System® (PROMIS®) to determine comprehensibility and relevance of measure content. Methods: Our multi-step approach involved item identification, refinement, and generation; translatability and reading level review; and cognitive interviews. A purposive sample of 25 AYAs and 10 caregivers participated, ensuring representation across age, education, gender, race/ethnicity, and cancer type. Results: Fifty patient-reported and caregiver-reported items were developed across material, psychosocial, and behavioral subdomains of financial hardship. Translatability and reading level reviews resulted in 22 patient-reported and 25 caregiver-reported items being rewritten. Eighty-eight percent of patients and all caregivers described the items as easy to answer. Younger AYAs (15 to 25 years of age) were more likely to say the items were less relevant for them. Forty-six patient-reported and 48 caregiver-reported items were recommended for further testing. Conclusion: This study is the first to use in-depth qualitative methods to center AYA patient and caregiver experiences in the creation of new measures of financial hardship. Data support the comprehensibility and content validity of these preliminary item banks. Future large-scale, quantitative testing will lead to additional refinements and support the use of short forms and computer-adaptive testing for a diverse sample of AYAs and their caregivers.

Purpose: Despite improvements in survival, adolescent and young adult (AYA) oncology patients are at high risk for experiencing negative health-related quality of life (HRQOL) outcomes. AYA cancer programs have attempted to develop assessment tools to identify areas of need. We aimed to demonstrate the feasibility/utility of the Patient-Reported Outcome Measurement Information System^®-29 (PROMIS^®-29) within an AYA oncology program clinic. Methods: AYA patients were referred by oncologists to the AYA oncology program at Prisma Health. The PROMIS-29 v2.0 survey was administered to AYAs at point of care. Feasibility of distribution and completion rate of surveys were determined. PROMIS surveys were self-reported and subsequently scored using standardized methods. The domains assessed included physical function, anxiety, depression, fatigue, sleep disturbance, ability to participate in social roles/activities, pain interference, and pain intensity. Qualitative descriptions of AYA care delivery based on survey responses at the patient level and programmatic level are also presented. Results: Between May 2017 and 2019, 134 AYAs who were newly diagnosed or in treatment completed the survey. Distribution and completion rates for the PROMIS-29 were both 100%, and meaningful changes in program-level services were implemented as a result of PROMIS-29 score patterns. Within the entire cohort, T-scores for anxiety, fatigue, and physical function reached clinically relevant thresholds. Conclusion: PROMIS offers a feasible opportunity for AYA programs to measure clinically useful HRQOL outcomes in AYAs. The survey can be used to deliver real-time AYA care to recently diagnosed and in-treatment AYAs and make programmatic changes within AYA oncology programs.

Purpose: Improvements in outcomes for adolescent and young adult (AYA) oncology patients have lagged behind those of other age-specific cancer populations. Research has indicated that low availability of clinical trials, biological differences of this age-group, and several psychosocial factors including higher emotional distress impact outcomes. To improve care and survival rates for these patients, hospitals have implemented AYA oncology programs. The current study evaluated documentation of care in an AYA program housed in an academic medical center based on three areas emphasized in the National Comprehensive Cancer Network's Clinical Practice Guidelines in Oncology for AYAs: clinical trial enrollment, fertility, and psychosocial care. Methods: Retrospective chart reviews were conducted for 45 patients treated before the start of the AYA oncology program and 45 patients treated after program initiation. Patients aged 15-39 years with a diagnosis of a malignant tumor were included. Variables evaluated included documentation of clinical trial enrollment, fertility preservation and sexual health considerations, and behavioral health referrals. Results: Documentation of most clinical trial and fertility variables did not significantly improve from pre- to post-program, although a higher number of patients had these variables documented post-program. Behavioral health referrals increased significantly from 52.8% pre-program to 95.4% post-program. Conclusion: Access to behavioral health care improved the most following implementation of our AYA program, which is likely because of the integration of a dedicated psychologist for AYAs when the program began. The practice of guideline-based care for this population can be better assessed and improved with designated behavioral health providers and more systematic documentation processes.

Purpose: The AYA Psycho-Oncology Screening Tool was developed to assess adolescent and young adult (AYA) patients' distress during cancer treatment. The on-treatment distress screening tool has been validated with AYAs and includes a 10-point distress thermometer (DT) and a 53-item problem checklist (PCL). However, previous studies have not solely examined AYA cancer distress within a children's hospital. Therefore, our project aimed to explore AYA distress in a pediatric cancer setting. Methods: AYA-aged participants (aged ≥15) were given the distress screener initially within 1 month of diagnosis and every 2, 4, or 6 months, depending on their previous distress score. Chi-square, independent t-tests, and binary logistic regressions were conducted for data analysis. Results: Between January 2021 and July 2022, we completed 123 screenings in 68 AYAs (age 15-30) on treatment. Average DT score was 2.96 with 30% of participants endorsing distress levels of 5 and above. There were statistically significant differences by sex as females endorsed higher levels of distress compared with males. Adolescents (<18) endorsed statistically significant higher frequency of emotional PCL items in comparison with young adults (≥18). There were no differences by race or diagnosis. Conclusions: Our team gained awareness of specific areas of concerns for AYAs, allowing for more targeted interventions for distressed participants. Certain demographic variables may put participants at risk for increased distress. As a result of the project, a protocol has been developed to follow up with participants if they report a certain distress score (5 or above) and/or endorse critical items.

This study describes young adult female (YA-F) cancer survivors' uncertainty management strategies related to fertility/family building. Cross-sectional data were analyzed (n = 98). Participants reported higher rates of seeking information to reduce fertility-related uncertainty (M = 5.48, ±1.03), than avoiding information (M = 4.77, ±1.29). Controlling for relevant covariates (i.e., reproductive distress, household income, and health literacy), greater avoidance was related to higher reproductive distress (β = 0.293, p = 0.011) and lower household income (β = -0.281, p = 0.047). Evidence suggests that some survivors may avoid fertility-related information to manage uncertainty and distress, which may impact family-building success. Fertility avoidance may be an important target of intervention.