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Survival outcomes for adolescent and young adult patients with soft tissue sarcomas lag behind those of children diagnosed with histologically similar tumours. To help understand these differences in outcomes, we discuss the following issues with regard to the management of these patients with soft tissue sarcomas: delays in diagnosis, trial availability and participation, aspects of the organisation of care (with an emphasis on age-specific needs), national centralisation of sarcoma care, international consortia, and factors related to tumour biology. Improved understanding of the causes of the survival gap between adolescents and young adults with sarcomas will help drive new initiatives to improve final health outcomes in these populations. In this Review, we specifically focus on embryonal and alveolar rhabdomyosarcoma, synovial sarcoma, and adult soft tissue sarcomas diagnosed in adolescents and young adults, and discuss the age-specific needs of these patients.

Compared with children and older adults, the burden of cancer in adolescents and young adults (ages 15–39) is understudied. We aimed to quantify the global burden of adolescent and young adult cancer in 2022 and 2050, and explore patterns in incidence, mortality, and case fatality. In this population-based study, we used the GLOBOCAN database to quantify the number of new cases and cancer-related deaths, and corresponding age-standardised incidence and mortality rates (ASRs; per 100 000 people aged 15–39 years), in adolescents and young adults. Estimates were quantified for all cancers combined, excluding non-melanoma skin cancer, and 33 specific cancer types. Case fatality was estimated using mortality-to-incidence ratios. Overall and sex-specific estimates were calculated at the world, regional, human development index (HDI), and income level. We estimated the future cancer burden by applying the GLOBOCAN 2022 rates to sex-specific demographic projections for the year 2050 using the UN World Population Prospects 2019 revision. An estimated 1 300 196 cases and 377 621 cancer-related deaths occurred in adolescents and young adults in 2022. Incidence ASRs were 1·9-times higher and mortality ASRs were 1·2-times higher in females than in males (incidence ASR 52·9 vs 28·3; mortality ASR 13·1 vs 10·6). Although the incidence ASR was highest in the high-income countries, the mortality ASR was highest in the low-income countries; as a result, case fatality ranged from 12% in high-income settings to 57% in low-income settings. Of the 33 cancer types included in our analyses, breast or cervical cancer was the most frequently diagnosed cancer and cause of cancer-related death in 163 and 93 countries, respectively; incidence and mortality also varied the most by region for these cancers. Finally, the adolescent and young adult cancer burden globally is projected to increase by about 12% from 2022 to 2050, albeit with declines of 10·7% projected in very high HDI countries. The increase is expected to overwhelmingly impact low HDI settings, where the burden of both cancer cases and deaths is projected to double (a 102·3% increase). Although the adolescent and young adult cancer burden incidence is highest in the most developed settings, transitioning countries have the poorest outcomes and will face the greatest increases in burden by 2050. These findings act as a reference to the global adolescent and young adult cancer community to inform cancer control priorities and decrease global inequities. None.

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.

Background: Sarcoma patients often experience a long time to diagnosis, known as the total interval. This interval can be divided into the patient (time from symptoms to doctor consultation) and diagnostic intervals (time from first consultation to diagnosis). In other cancers, a long total interval has been associated with worse outcomes, but its effect on health-related quality of life (HRQoL) has never been investigated among sarcoma patients. This study investigates the association between (1) the actual time to diagnosis and HRQoL; (2) the perceived impact of the diagnostic interval length and HRQoL; (3) the actual length and perceived impact of the length and the HRQoL of sarcoma survivors. Methods: A cross-sectional study was performed among sarcoma patients aged ≥18, diagnosed 2–10 years ago in the Netherlands. The participants completed a questionnaire on HRQoL, the time to diagnosis, the perceived impact of the diagnostic interval on HRQoL, and coping. Results: 1099 participants were included (response rate, 58%). The mean time since diagnosis was 67.4 months. More than half reported a patient (60%) or diagnostic interval (55%) ≥1 month. A third (31%) perceived a negative impact of the diagnostic interval length on HRQoL. Patient or diagnostic interval length was not associated with HRQoL. By contrast, participants perceiving a negative impact (32%) had lower HRQoL scores than those perceiving a positive (11%) or no impact (58%) (p = 0.000). This association remained significant in a multivariable model, in which maladaptive coping strategies and tumour characteristics were also found to be associated with HRQoL. Participants perceiving a negative impact of the length of the diagnostic interval related this to high psychological distress levels, more physical disabilities, and worse prognosis. Conclusion: The perceived impact of the diagnostic interval length was associated with the HRQoL of sarcoma survivors, whereas the actual length was not associated with HRQoL. Maladaptive coping strategies were independently associated with HRQoL. This offers opportunities for early intervention to improve HRQoL.

Bone metastases, especially to the spine, are frequently encountered during the course of a malignancy. Due to a worldwide increase of cancer incidence and to a longer life expectancy of patients with cancer, a rise in incidence of bone metastases is observed. A brief historical overview is the base of a review of current treatment options. Despite new developments in the surgical and radiotherapeutic fields, as well as in medical oncology, external beam radiotherapy is the cornerstone of the treatment of spinal metastases. In selected cases, surgical treatment is a proven option. Vertebroplasty or kyphoplasty can also be considered. Supportive medical care does not differ from that given for symptomatic lesions to the skeletal system elsewhere in the body. After discussing the treatment options, an algorithm is given. [PUBLICATION ABSTRACT]

ObjectiveHigh fear of cancer recurrence (FCR) is a frequently reported problem among cancer patients. Previous research has shown that younger age is associated with higher levels of FCR. However, little attention has been given to date about how FCR manifests itself among adolescent and young adult (AYA) cancer patients. This study explores the prevalence, correlates of high FCR, and its association with HRQoL in cancer patients in their late adolescence or young adulthood.MethodsSeventy-three AYA cancer patients, aged 18–35 years at diagnosis, consulted the AYA team of the Radboud University Medical Center completed questionnaires including the Cancer Worry Scale (CWS), Quality of Life-Cancer Survivors (QOL-CS), and Hospital Anxiety and Depression Scale (HADS). Sociodemographic and medical data was collected by self-reported questionnaire.ResultsForty-five participants experienced high FCR (62%), which was higher than the 31–52% reported in previous studies among mixed adult cancer patient samples. Sociodemographic and medical variables were not associated with levels of FCR. High FCR was significantly associated with lower levels of social and psychological functioning and overall HRQoL and higher levels of anxiety and psychological distress.ConclusionResults illustrate that FCR is a significant problem among AYA cancer patients consulting an AYA team, with participants reporting higher levels of FCR than cancer patients of mixed ages. Health care providers should pay specific attention to this problem by screening and the provision of appropriate psychosocial care when needed.

Explanatory clinical trials, which focus on evaluating therapeutic efficacy under ideal circumstances, are crucial for learning about new therapeutic interventions; however, they also exhibit shortcomings. These include non-representative populations and frequent use of intermediate endpoints, leading to uncertainty about the applicability of study results to patients in the real-world. Moreover, these trials often do not address all clinically meaningful questions, highlighting the need for optimisation within the oncology research framework. Refinements can be partly achieved by incorporating more pragmatic elements into cancer clinical trials. At a virtual European Organisation for Research and Treatment of Cancer workshop, key stakeholders convened to discuss the methodological characteristics and value of pragmatic trials, which focus on evaluating effectiveness in routine clinical practice, and their capacity to address the efficacy–effectiveness gap. This Policy Review outlines and discusses some of the views and perspectives expressed on the role of pragmatic trials in the current framework and their ability to inform decision making, and the recommended priorities for enhancing pragmatism in cancer clinical research.

PurposeThe CONDOR study showed that docetaxel/cisplatin/5-fluorouracil (TPF) followed by conventional radiotherapy with cisplatin 100 mg/m2 on days 1, 22, and 43 (cis100 + RT; n = 27)) versus accelerated radiotherapy with cisplatin weekly 40 mg/m2 (cis40 + ART; n = 29) in locally advanced head and neck cancer (LAHNC) patients was not feasible. Here, we report the analysis of health-related quality of life (HRQOL) of the patients entered in this study.MethodsHRQOL was assessed at baseline, after two TPF, before start of chemoradiotherapy, and 1, 4, 8, 12, and 24 months after completion of chemoradiotherapy using the EORTC-QLQ-C30 and QLQ-H&N35 in 62 patients.ResultsCompliance with the QOL questionnaires was 94% (59/62) at baseline and 61% (30/49) at 12 months, respectively. HRQOL decreased after TPF and further decreased during chemoradiohteray in both arms equally. Pain and swallowing dysfunction improved significantly during TPF but deteriorated below baseline levels during chemoradiotherapy, cis40 + ART > cis100 + RT (p < 0.05). HRQOL and symptoms restored to baseline within 12 months in both arms and remained at that level until 24 months.ConclusionsAfter TPF, cis40 + ART had a larger negative impact on symptoms than cis100 + RT, probably due to the ART. HRQOL and symptoms restored to baseline levels within 12 months after end of treatment in both arms, which is an important perspective for patients during the phase of most serious acute side effects of treatment.Trial registration: NCT00774319.

Background The behavior of desmoid tumors is unpredictable and varies from spontaneous remission to symptomatic and radiologic progression. This study aimed to evaluate the radiologic and symptomatic course of the disease in patients initially managed with active surveillance. Methods Patients with a primary desmoid tumor at any anatomic location diagnosed between 1998 and 2016 were identified in a prospectively maintained database from a single sarcoma reference center in the United Kingdom. Inverse univariate Cox proportional hazard regression analyses were conducted to evaluate the course of the disease and indications for initiating treatment. Results The study identified 168 patients with a primary desmoid tumor initially managed with active surveillance. The tumors were located in the abdominal wall ( n  = 61, 36%), an extremity ( n  = 51, 30%), chest wall ( n  = 30, 18%), intra-abdominal site ( n  = 15, 9%), or elsewhere ( n  = 11, 6%). Of all the patients, 36% experienced radiologic progressive disease, 36% had stable disease, and 27% regressed. The patients younger than 50 years were more likely to progress ( p  = 0.046), whereas the patients with chest wall or upper-extremity tumors reported significantly more pain ( p  = 0.01). Eventually, 46% of the patients proceeded to treatment. The median time to start of treatment after initial surveillance was 31 months, whereas the median follow-up time for the patients not receiving any treatment was 40.5 months. The indications for initiation of treatment were pain (32%), progression (31%), or both (13%). Conclusions Patients with desmoid tumors can be managed with initial active surveillance, although almost half of patients may eventually need treatment. Pain, tumor progression, or both are the most common indications for the initiation of treatment.

(1) Background: Studies examining the psychosocial impact of living long term on systemic treatment in advanced cancer patients are scarce. This scoping review aimed to answer the research question “What has been reported about psychosocial factors among patients living with advanced cancer receiving life-long systemic treatment?”, by synthesizing psychosocial data, and evaluating the terminology used to address these patients; (2) Methods: This scoping review was conducted following the five stages of the framework of Arksey and O’Malley (2005); (3) Results: 141 articles published between 2000 and 2021 (69% after 2015) were included. A large variety of terms referring to the patient group was observed. Synthesizing qualitative studies identified ongoing uncertainty, anxiety and fear of disease progression or death, hope in treatment results and new treatment options, loss in several aspects of life, and worries about the impact of disease on loved ones and changes in social life to be prominent psychosocial themes. Of 82 quantitative studies included in the review, 76% examined quality of life, 46% fear of disease progression or death, 26% distress or depression, and 4% hope, while few studies reported on adaptation or cognitive aspects. No quantitative studies focused on uncertainty, loss, or social impact; (4) Conclusion and clinical implications: Prominent psychosocial themes reported in qualitative studies were not included in quantitative research using specific validated questionnaires. More robust studies using quantitative research designs should be conducted to further understand these psychological constructs. Furthermore, the diversity of terminology found in the literature calls for a uniform definition to better address this specific patient group in research and in practice.