Search

Simple Summary: Cardiovascular diseases are among the most frequent, although rare, long-term sequalae in adolescents and young adult survivors of breast cancer. However, no dedicated tool exists to help clinicians with planning personalized follow-up strategies for these patients. To make up for this lack, in this work, we developed a Bayesian network, an artificial intelligence model, to predict the 5-year risk for cardiovascular diseases in these patients, leveraging real-world data from two different cohorts. The model showed a very good ability to identify patients at risk and select those that should be prioritized because they are at higher risk, making it useful for guiding clinicians in everyday practice. Finally, the methodological approach proposed in this work is particularly interesting for all researchers who aim at developing causally interpretable tools, also dealing with real-world data and their biases. Background: In the last decades, the increasing number of adolescent and young adult (AYA) survivors of breast cancer (BC) has highlighted the cardiotoxic role of cancer therapies, making cardiovascular diseases (CVDs) among the most frequent, although rare, long-term sequalae. Leveraging innovative artificial intelligence (AI) tools and real-world data (RWD), we aimed to develop a causally interpretable model to identify young BC survivors at risk of developing CVDs. Methods: We designed and trained a Bayesian network (BN), an AI model, making use of expert knowledge and data from population-based (1036 patients) and clinical (339 patient) cohorts of female AYA (i.e., aged 18 to 39 years) 1-year survivors of BC, diagnosed in 2009–2019. The performance achieved by the BN model was validated against standard classification metrics, and two clinical applications were proposed. Results: The model showed a very good classification performance and a clear causal semantic. According to the predictions made by the model, focusing on the 25% of AYA BC survivors at higher risk of developing CVDs, we could identify 81% of the patients who would actually develop it. Moreover, a desktop-based app was implemented to calculate the individual patient's risk. Conclusions: In this study, we developed the first causal model for predicting the CVD risk in AYA survivors of BC, also proposing an innovative AI approach that could be useful for all researchers dealing with RWD. The model could be pivotal for clinicians who aim to plan personalized follow-up strategies for AYA BC survivors. [ABSTRACT FROM AUTHOR]

Simple Summary: For Adolescents and Young Adults (AYAs) with gynecological cancer, preserving fertility is crucial for their Quality of Life. This systematic review explores how possible (in)fertility affects treatment choice and psychological well-being during and after treatment. The studies included were evaluated using the Mixed Methods Appraisal Tool (MMAT). A total of 15 studies were analyzed. The key findings emphasize the importance of informing all AYAs about how cancer treatment can impact fertility and discussing available fertility preservation options. This review also highlights that AYAs with gynecological cancer who do not have fertility preservation options are often overlooked. Therefore, research should focus more on this specific group. We recommend improving the Shared Decision-Making (SDM) and follow-up process for AYAs with gynecological cancer by addressing fertility-related questions and concerns, which could enhance their long-term Quality of Life. Background/Objectives: With growing survival rates for Adolescent and Young Adults (AYAs) diagnosed with gynecological cancer, the focus shifted to Quality of Life (QoL). Fertility-sparing surgery offers a viable alternative to standard, usually fertility-impairing treatments. Treatment choice remains difficult and renders perspectives of AYAs on decision-making and psychological outcomes afterwards. This review examines the impact of (in)fertility on psychological well-being both during cancer treatment, and in the long term. Methods: A systematic review of the peer-reviewed literature was conducted by searching Pubmed, Web of Science, Cochrane Trial database and PsycINFO on 30 November 2023. The review included studies with a focus on gynecological cancer, fertility and pregnancy related psychological outcomes, QoL, and psychosocial factors influencing decision-making. Case reports and reviews were excluded. Quality was assessed with the Mixed Methods Appraisal Tool (MMAT). Results: 15 studies, published between 2005 and 2023, involving 1328 participants, were included. Key findings highlight the significance of informing all AYAs about cancer treatment effects on fertility and discussing fertility preservation options. Feeling time-pressured and conflicted between choosing the best oncological outcomes and preserving fertility were common. Factors such as younger age at diagnosis, time pressure, and inadequate counseling by healthcare workers increased reproductive concerns which contributed to long term psychological distress. Research on AYAs with gynecological cancer without fertility preservation possibilities is limited and should be prioritized. Conclusions: This review shows that both Shared Decision-Making (SDM) and follow-up processes can be improved by addressing fertility-related questions and concerns, therefore increasing long-term QoL. This review is registered in PROSPERO (ID 448119). [ABSTRACT FROM AUTHOR]

Simple Summary: In a study analyzing 61 patients under the age of 39 diagnosed with malignant ovarian germ cell tumors (MOGCTs) between 2006 and 2022, the 5-year overall survival (OS) rate was 98.3%, and the event-free survival (EFS) rate was 84.9%. In total, 57 patients received bleomycin, etoposide, and cisplatin combined chemotherapy, with 44 having a reduced dose of bleomycin and 13 having the standard dose of bleomycin. The reduced bleomycin dose did not negatively impact survival. Histology and stage did not significantly impact EFS, whereas the rapid normalization of all tumor markers after surgery was associated with better EFS. Dose reduction of bleomycin did not adversely influence survival, and the overall chemotherapy-related toxicity was manageable, with no therapy-related toxic deaths. To investigate the outcomes of children, adolescents, and young adults (AYAs) with malignant ovarian germ cell tumors (MOGCTs), we analyzed the data of 61 patients aged ≤39 years diagnosed with MOGCT between 2006 and 2022. Among 59 patients who received chemotherapy after initial diagnosis, 57 received BEP (standard dose of bleomycin with 30 units per week, n = 13) or bEP (reduced dose of bleomycin with 15 units/m2 on day 1, n = 44). The 5-year overall survival (OS) and event-free survival (EFS) rates were 98.3% and 84.9%, respectively. Reduced bleomycin dose did not adversely affect survival. Normalization of tumor markers within 3 months after surgery was significantly associated with better EFS (p < 0.01). Of the 59 surviving patients, 8 experienced surgery-related menopause, while 49 demonstrated menstrual recovery. After completion of chemotherapy, there was no significant difference in pulmonary function regarding bleomycin dose, and no overt nephrotoxicity. Approximately 60% and 25% of survivors experienced peripheral neuropathy at the end of chemotherapy and after 1 year, respectively (p < 0.01). Children and AYAs with MOGCT have favorable survival rates with minimal long-term toxicity, which are not influenced by a reduced bleomycin dose. Rapid normalization of tumor markers is associated with improved outcomes. [ABSTRACT FROM AUTHOR]

Simple Summary: Adolescents and young adults (AYAs) with life-threatening illnesses want to voice their end-of-life choices. However, these conversations do not happen often. This is in part because of the discomfort that surrounds talking about these issues and because health professionals often have not had enough training in this area. Voicing My CHOiCES is an American booklet which serves as a communication guide to help AYAs have these important discussions with their families and health professionals and document their preferences for care. Our study looked at whether the American guide was suited to young Australians, and what aspects of the guide young people, health professionals, and parents thought caused stress. Overall, participants thought the guide was appropriate and helpful for adolescents and young adults, and they talked about different sources of stress for AYAs attempting to complete it. Our research will inform the adapted Australian Voicing My CHOiCES and support health professionals in how to use this guide to facilitate positive end-of-life outcomes for young people and their families. Background: Adolescents and young adults (AYAs) with life-threatening illnesses need support to discuss and voice their end-of-life choices. Voicing My CHOiCES (VMC) is a research-informed American advanced care planning guide designed to help facilitate these difficult discussions. This multi-perspective study aimed to evaluate its appropriateness, acceptability, and clinical considerations for Australian AYAs with cancer. Procedure: Forty-three participants including AYAs who were either undergoing or recently completed cancer treatment, their parents, and multidisciplinary health professionals assessed the acceptability of each VMC section quantitatively (appropriateness—yes/no, helpfulness and whether content caused stress—1 = not at all, to 5 = very) and qualitatively (sources of stress). AYAs also assessed the benefit and burden of completing several sections of the document, to inform clinical considerations. We conducted a mixed-methods analysis to obtain descriptive statistics and to identify prominent themes. Results: In terms of acceptability, almost all participants (96%) rated VMC as appropriate overall. Perceived helpfulness to their situation (to themselves/their child/their patients), to others, and stressfulness were rated, on average, as 4.1, 4.0, and 2.7/5, respectively. Stress was attributed to individual and personal factors, as well as interpersonal worries. All sections were considered more beneficial than burdensome, except for the Spiritual Thoughts section (Section 6). Conclusions: While VMC is an acceptable advance care planning guide for AYAs with cancer, changes to the guide were suggested for the Australian context. Health professionals implementing VMC will need to address and mitigate anticipated sources of stress identified here. Future research evaluating the impact of a new culturally adapted Australian VMC guide is an important next step. Finally, the clinical implications of the present study are suggested. [ABSTRACT FROM AUTHOR]

Simple Summary: Adolescent and young adult (AYA) cancer survivors diagnosed with cancer between ages 18–39 years often experience negative body changes, such as scars, amputation, hair loss, disfigurement, body weight changes, skin buns, and physical movement limitations. A negative body image could have negative implications for the self-esteem, self-identity, and social relationships of AYAs. Despite the possible long-term effects of cancer on body image, within the AYA literature, limited studies focus on AYA cancer survivors in a quantitative way. Therefore, the aim of our population-based cross-sectional study was to examine the prevalence, and association of a negative body image with sociodemographic, clinical, and psychosocial factors, among AYA survivors 5–20 years after diagnosis. Raising awareness and integrating supportive care for those who experience a negative body image into standard AYA survivorship care is warranted. Future longitudinal research could help to identify when and how this support for AYA survivors can be best utilized. Adolescent and young adult (AYA) cancer survivors (18–39 years at diagnosis) often experience negative body changes such as scars, amputation, and disfigurement. Understanding which factors influence body image among AYA survivors can improve age-specific care in the future. Therefore, we aim to examine the prevalence, and association of a negative body image with sociodemographic, clinical, and psychosocial factors, among AYA cancer survivors (5–20 years after diagnosis). A population-based cross-sectional cohort study was conducted among AYA survivors (5–20 years after diagnosis) registered within the Netherlands Cancer Registry (NCR) (SURVAYA-study). Body image was examined via the EORTC QLQ-C30 and QLQ-SURV100. Multivariable logistic regression models were used. Among 3735 AYA survivors who responded, 14.5% (range: 2.6–44.2%), experienced a negative body image. Specifically, AYAs who are female, have a higher Body Mass Index (BMI) or tumor stage, diagnosed with breast cancer, cancer of the female genitalia, or germ cell tumors, treated with chemotherapy, using more maladaptive coping strategies, feeling sexually unattractive, and having lower scores of health-related Quality of Life (HRQoL), were more likely to experience a negative body image. Raising awareness and integrating supportive care for those who experience a negative body image into standard AYA survivorship care is warranted. Future research could help to identify when and how this support for AYA survivors can be best utilized. [ABSTRACT FROM AUTHOR]

Simple Summary: The individual's ability to conceive and regulate the broad spectrum of their human emotions is closely linked to their mental health. The implications of a serious disease such as cancer represent an extraordinary burden to these internal coping mechanisms, especially in the case of young patients. Regarding their well-being and support, it is therefore of particular interest for caregivers to be able to follow the dynamics of the patient's emotional world and perceptions. Technical progress enables new possibilities for data collection through tools for digital patient self-reports while simultaneously creating new challenges. Within the scope of this article, we provide an overview of the literature on this topic, outlining the current strengths and weaknesses and possible perspectives on digital aids, especially in terms of capturing the flexibility, fluctuations and early detection of symptom changes. Emotion dysregulation is regarded as a driving mechanism for the development of mental health problems and psychopathology. The role of emotion regulation (ER) in the management of cancer distress and quality of life (QoL) has recently been recognized in psycho-oncology. The latest technological advances afford ways to assess ER, affective experiences and QoL in child, adolescent and young adult (CAYA) cancer patients through electronic patient-reported outcomes (ePRO) in their daily environment in real-time. Such tools facilitate ways to study the dynamics of affect and the flexibility of ER. However, technological advancement is not risk-free. We critically review the literature on ePRO in cancer existing models of ER in pediatric psycho-oncology and analyze strength, weaknesses, opportunities and threats of ePRO with a focus on CAYA cancer research and care. Supported by personal study-based experiences, this narrative review serves as a foundation to propose a novel methodological and metatheoretical framework based on: (a) an extended notion of ER, which includes its dynamic, adaptive and flexible nature and focuses on processes and conditions rather than fixed categorical strategies; (b) ePRO as a means to measure emotion regulation flexibility and affect dynamics; (c) identifying early warning signals for symptom change via ePRO and building forecasting models using dynamical systems theory. [ABSTRACT FROM AUTHOR]

Simple Summary: Fear of cancer recurrence is a main concern for the majority of cancer patients during their disease. Young adults with cancer may experience fear of recurrence throughout their lives, given their relatively long potential survival time. More research is needed to identify evidence-based interventions that can adequately address this fear. Investigating the underlying mechanisms that trigger and sustain fear of cancer recurrence is an important step toward this goal. Network analysis is a useful tool to study symptoms and their structural relationships. The aim of this study is to apply the network analysis approach in a sample of young cancer patients to comprehend their specific symptomatology and define the optimal structure of a questionnaire to assess fear of recurrence in this patient group. Future studies may seek to replicate our findings among different age group samples to identify network structures and potential targets for clinical intervention. Due to the high survival rates of many young cancer patients and a high risk of second tumors, fear of cancer recurrence (FCR) can cause serious impairment for adolescent and young adult (AYA) cancer patients. The aim of this study is to analyze the structure of the Fear of Disease Progression Questionnaire (FoP-Q-12) to better understand the construct of FCR. We performed a cross-sectional survey on a sample of AYA patients aged 15–39 years with different tumor entities. FCR was measured using the FoP-Q-12, and a network analysis was conducted to examine the relationship of FCR symptoms. The importance of individual items in the network was determined using centrality analyses. A total of 247 AYA patients (81.8% female, median age 31.0 years) participated in the study. The mean FCR score in the sample was 35.9 (SD = 9.9). The majority of patients reported having high FCR (59.5%), according to the established cut-off. The two questionnaire items with the strongest association related to fears about work, and the most central symptom was the fear of serious medical interventions. The centrality of emotional issues in the sample indicates that these symptoms should be prioritized in the development of interventions targeting FCR. Further research should address this topic with larger samples of patients in other age groups and in longitudinal studies. [ABSTRACT FROM AUTHOR]

Simple Summary: Adolescent and young adult (AYA) cancer patients, those who are diagnosed with cancer for the first time at the age of 15–39 years, are recognized as a distinct population within the oncology community due to the unique challenges they face throughout their disease trajectory. The number of AYAs who develop cancer per year has increased over the last decades, and >80% is expected to survive beyond 5 years. However, this rapidly growing AYA cancer survivor population is also at increased risk of cancer- and treatment-related long-term and late effects. There is a need for research efforts to inform the survivorship care of this unique population. The aims of this overview paper are to describe the epidemiology of the AYA cancer survivor population, the current knowledge on long-term and late effects, challenges and models of AYA survivorship care, and future opportunities within research as well as healthcare. Worldwide, more than 1.2 million adolescents and young adults (AYAs; those aged 15–39 years) are diagnosed with cancer each year. Although considerable variability exists according to cancer site and stage of disease, the 5-year relative survival at the time of diagnosis has been estimated at >80% for all AYA patients with cancer combined. Extensive survivorship research in recent decades has focused on patients diagnosed with cancer as children (<15 years) and older adults (>39 years), yet few studies to date have reported outcomes specifically for patients diagnosed as AYAs. With increasing incidence and improving survival for many tumor types, leading to the majority of AYA patients with cancer becoming long-term survivors, there is a critical need for research efforts to inform the survivorship care of this growing population. This article describes the population of AYA cancer survivors according to their epidemiology and late and long-term effects, the challenges and models of AYA survivorship care, as well as future opportunities for research and healthcare. [ABSTRACT FROM AUTHOR]

Simple Summary: Around 90% of children diagnosed with acute lymphoblastic leukemia are long-term survivors due to the efforts made in the last decades to tailor the chemotherapy protocols, which is not the case for the adult population. This literature review proposes to bring together all the relevant data to answer the ardent question: why the results in adults, adolescents and young adults are not nearly as good as those obtained in children? It is a new and exciting time for acute lymphoblastic leukemia (ALL). While nearly 50 years ago, only one in nine children with ALL survived with chemotherapy, nowadays nearly 90% of children have a chance of long-term survival. Adults with ALL, as well as the special category of adolescents and young adult (AYA) patients, are catching up with the new developments seen in children, but still their prognosis is much worse. A plethora of factors are regarded as responsible for the differences in treatment response, such as age, ethnicity, disease biology, treatment regimens and toxicities, drug tolerance and resistance, minimal residual disease evaluation, hematopoietic stem cell transplantation timing and socio-economic factors. Taking these factors into account, bringing pediatric-like protocols to adult patient management and incorporating new agents into frontline treatment could be the key to improve the survival rates in adults and AYA. [ABSTRACT FROM AUTHOR]

Simple Summary: In acute lymphoblastic leukemia (ALL), once a complete remission is achieved following induction chemotherapy, the study of submicroscopic minimal residual disease (MRD) represents a highly sensitive tool to assess the efficacy of early chemotherapy courses and predict outcome. Because of the significant therapeutic progress occurred in adolescent and young adult (AYA) ALL, the importance of MRD in this peculiar age setting has grown considerably, to refine individual prognostic scores within different genetic subsets and support specific risk and MRD-oriented programs. The evidence coming from the most recent MRD-based studies and the new therapeutic directions for AYA ALL are critically reviewed according to ALL subset and risk category. In many clinical studies published over the past 20 years, adolescents and young adults (AYA) with Philadelphia chromosome negative acute lymphoblastic leukemia (Ph− ALL) were considered as a rather homogeneous clinico-prognostic group of patients suitable to receive intensive pediatric-like regimens with an improved outcome compared with the use of traditional adult ALL protocols. The AYA group was defined in most studies by an age range of 18–40 years, with some exceptions (up to 45 years). The experience collected in pediatric ALL with the study of post-induction minimal residual disease (MRD) was rapidly duplicated in AYA ALL, making MRD a widely accepted key factor for risk stratification and risk-oriented therapy with or without allogeneic stem cell transplantation and experimental new drugs for patients with MRD detectable after highly intensive chemotherapy. This combined strategy has resulted in long-term survival rates of AYA patients of 60–80%. The present review examines the evidence for MRD-guided therapies in AYA's Ph− ALL, provides a critical appraisal of current treatment pitfalls and illustrates the ways of achieving further therapeutic improvement according to the massive knowledge recently generated in the field of ALL biology and MRD/risk/subset-specific therapy [ABSTRACT FROM AUTHOR]

Simple Summary: In Adolescents and Young Adults (AYAs), fertility is an important factor for good quality of life. In the case of cancer of the female reproductive tract, treatment can impair fertility and therefore, AYAs may face the life-changing decision whether or not to undergo conservative, fertility-sparing cancer treatment. Solid evidence on the safety as well as reproductive outcomes of these treatments is necessary to provide patients the information they need to make a well-informed choice. This systematic review aims to provide an overview of the best evidence available on both oncological and reproductive outcome after various fertility-sparing surgical options in cervical, ovarian, and endometrial cancer. Fertility-sparing surgery (FSS) is increasingly being offered to women with a gynecological malignancy who wish to preserve fertility. In this systematic review, we evaluate the best evidence currently available on oncological and reproductive outcome after FSS for early stage cervical cancer, epithelial ovarian cancer, and endometrial cancer. An extensive literature search was conducted using the electronic databases Medline (OVID), Embase, and Cochrane Library to identify eligible studies published up to December 2020. In total, 153 studies were included with 7544, 3944, and 1229 patients who underwent FSS for cervical, ovarian, and endometrial cancer, respectively. We assessed the different FSS techniques that are available to preserve fertility, i.e., omitting removal of the uterine body and preserving at least one ovary. Overall, recurrence rates after FSS are reassuring and therefore, these conservative procedures seem oncologically safe in the current selection of patients with low-stage and low-grade disease. However, generalized conclusions should be made with caution due to the methodology of available studies, i.e., mostly retrospective cohort studies with a heterogeneous patient population, inducing selection bias. Moreover, about half of patients do not pursue pregnancy despite FSS and the reasons for these decisions have not yet been well studied. International collaboration will facilitate the collection of solid evidence on FSS and the related decision-making process to optimize patient selection and counseling. [ABSTRACT FROM AUTHOR]

Simple Summary: Adolescents and young adults (AYAs) with cancer experience a high level of distress and have unique unmet palliative and supportive care needs. There is limited knowledge about the symptom burden, quality of life, and type of care that AYA patients receive. In 2017, a dedicated AYA-specialized palliative care clinic was established at Princess Margaret Cancer Centre in Canada, with a collaborative approach between palliative care and psychiatry. This study aims to describe the demographics and symptoms burden of AYA cancer patients who attended the integrated palliative care and psychiatry clinic, measure the impact of the clinic on AYAs' symptom control, and examine their end-of-life outcomes. Clinical guidelines aimed at cancer care for adolescents and young adults (AYAs) encourage early integration of palliative care, yet there are scarce data to support these recommendations. We conducted a retrospective chart review of AYA patients, aged 15 to 39 years, who were referred to the Integrated AYA Palliative Care and Psychiatry Clinic (IAPCPC) at the Princess Margaret Cancer Centre between May 2017 and November 2019 (n = 69). Demographic data, symptom prevalence, change in symptom scores between baseline consultation and first follow-up, and intensity of end-of-life care were collected from the patients' medical charts, analyzed, and reported. Of the 69 patients, 59% were female, and sarcoma was the most common cancer. A majority of patients had at least one symptom scored as moderate to severe; tiredness, pain, and sleep problems were the highest scored symptoms. More than one-third used medical cannabis to manage their symptoms. Symptom scores improved in 61% after the first clinic visit. Out of the 69 patients, 50 (72.5%) had died by October 2020, with a median time between the initial clinic referral and death of 5 months (range 1–32). Three patients (6%) received chemotherapy, and eight (16%) were admitted to an intensive care unit during the last month of life. In conclusion, AYAs with advanced cancer have a high burden of palliative and psychosocial symptoms. Creating a specialized AYA palliative care clinic integrated with psychiatry showed promising results in improving symptom scores and end-of-life planning. [ABSTRACT FROM AUTHOR]

Simple Summary: Adolescents and young adults (AYAs, aged 15–39 years) with cancer form a distinct patient population within the oncology care setting that is often overlooked in favour of paediatric and older adult patients. As such, specific knowledge on AYAs and their distinct spectrum of cancers is limited. Worldwide, cancer is increasing and it is among the major causes of death among AYAs. Cancer prognosis among AYAs has also been shown to lag behind that of younger and older patients suffering from similar diseases. To address these problems, better understanding of AYA cancers is needed. This study aims to provide an overview of the specific cancer trends among AYAs and the changes that have occurred in the Netherlands since 1990 in terms of incidence, survival, and mortality. This information will provide a solid foundation from which to guide future studies upon, aimed at acquiring more detailed cancer knowledge within the AYA domain. Adolescent and young adult (AYA) cancer patients, aged 15–39 years at primary cancer diagnosis, form a distinct, understudied, and underserved group in cancer care. This study aimed to assess long-term trends in incidence, survival, and mortality of AYA cancer patients within the Netherlands. Data on all malignant AYA tumours diagnosed between 1990–2016 (n = 95,228) were obtained from the Netherlands Cancer Registry. European age-standardised incidence and mortality rates with average annual percentage change (AAPC) statistics and five-year relative survival rates were calculated. The overall cancer incidence increased from 54.6 to 70.3 per 100,000 person-years (AAPC: +1.37%) between 1990–2016, and increased for both sexes individually and for most cancer types. Five-year relative survival overall improved from 73.7% in 1990–1999 to 86.4% in 2010–2016 and improved for both sexes and most cancer types. Survival remained poor (<60%) for rhabdomyosarcoma, lung, stomach, liver, bladder, and pancreatic carcinomas, among others. Mortality rates among male AYAs overall declined from 10.8 to 6.6 (AAPC: −1.64%) and from 14.4 to 10.1 per 100,000 person-years (AAPC: −1.81%) for female AYAs since 1990. Mortality rates remained unchanged for male AYAs aged 20–24 and 25–29 years. In conclusion, over the past three decades, there has been a considerable increase in cancer incidence among AYAs in the Netherlands. Meanwhile, the survival improved and the mortality overall declined. Survival at five-years now well exceeds above 80%, but did not do so for all cancer types. [ABSTRACT FROM AUTHOR]