Background: Health-related quality of life (HRQoL) is an important patient-reported outcome for all cancer patients, including adult patients with rare solid cancers. However, current knowledge of HRQoL in this population is limited, which hinders the delivery of personalized care. This review aimed to explore the heterogeneity of HRQoL among adult patients with a solid rare cancer across the ten European Reference Network for Rare Adult Solid Cancers (EURACAN) domains and to summarize the HRQoL measures used in clinical research. Methods: A systematic literature search was conducted to identify all clinical studies assessing HRQoL in adult patients with a solid rare cancer. Four databases (MEDLINE, PubMed, PsycINFO, and Web of Science/Scopus) were searched (February 2023). Results: The search yielded 18,704 articles, of which 1416 articles were fully screened and 463 were eligible for analysis. Of these, 397 studies used generic tools to assess HRQoL, while 270 used tumor-specific instruments. Three EURACAN domains (sarcoma, endocrine tumors, and thoracic tumors) primarily assessed HRQoL using generic questionnaires. Additionally, the rare gynecological tumor, rare male genitourinary, and sarcoma EURACAN domains lacked specific HRQoL measures. Brain, head and neck, and uveal melanoma EURACAN domains used tumor- or domain-specific questionnaires in more than half of the studies. Conclusions: This state-of-the-art literature review shows that HRQoL assessment is gradually becoming more prevalent in adult solid rare cancer research. A combination of generic, tumor-specific, and domain-specific questionnaires across various rare cancer domains has proven effective in capturing a broad range of HRQoL issues. However, many EURACAN domains still lack specific strategies for assessing HRQoL, which limits the ability to fully understand and address patients’ experiences. Future research should prioritize developing comprehensive and robust HRQoL measurement strategies and tools to enable meaningful clinical research and to ensure that the patient voice is incorporated in their clinical care.

Objective: This review explores the impact of cancer on adolescents' and young adults' (AYAs) romantic and sexual relationships, examining both challenges and opportunities. Methods: Qualitative studies on AYAs with cancer and/or their partners were searched based on a sub‐set of studies identified in a previous literature review within the EU Horizon STRONG‐AYA project, and supplemented with an additional search on romantic/sexual relationships. Articles were screened, reviewed in Rayyan and data extracted using a structured framework. Study quality was appraised, and findings were synthesised thematically. Results: Twenty studies were included. Findings revealed how cancer altered AYAs' sense of self, affecting the navigation of romantic relationships and sexual intimacy across four themes: (1) Romantic relationship development‐connection, isolation and changing priorities : Disrupted romantic trajectories and fears of being undesirable hindered relationship formation, though some re‐evaluated priorities, deepening emotional connections, (2) The disclosure dance: Finding the right time and way : AYAs struggled with when and how to disclose their diagnosis, with anxiety about burdening partners or altering dynamics. Open and honest communication fostered intimacy, (3) Body image, sexuality, intimacy, and fertility : Challenges in these areas impacted self‐worth, but also led to sexual empowerment and adapted intimacy, (4) Partnerships and social support during cancer : Unsupportive partners heightened isolation, while supportive partners reinforced self‐worth. Many AYAs experienced growth, resilience and a deeper understanding of themselves/their relationships. Conclusion: Results may inform age‐appropriate interventions to adequately address the unique challenges AYAs with cancer face in navigating romantic relationships and sexual intimacy.

Background: In adolescents and young adults (AYAs) with cancer, the importance of patient-centered research outcomes is increasingly acknowledged and there is a need for consensus on the most relevant outcomes. This review provides a comprehensive overview of outcomes relevant to AYAs with cancer in order to develop an AYA-specific core outcome set (COS) as part of the European project STRONG-AYA. Methods: A literature search was conducted to identify relevant articles in five databases. Each article was reviewed by two independent researchers, using Rayyan (an online tool) to screen articles by their title/abstract and then by their full text. Subsequently, the data were extracted using a predefined, tailored extraction framework. Results: In total, 17,301 articles were screened, of which 1631 were included in the analyses. Registry studies (52.9%) were the most used study type. Well-represented continents were North America (50.3%) and Europe (27.8%). Of the five core areas, functioning (47.0%) and epidemiology (44.9%) were covered most often, followed by physiological/clinical (42.4%), resource use (6.1%), and adverse events (4.5%). The outcome domains that were represented the most include mortality/survival (43.1%), delivery of care (23.4%), outcomes relating to neoplasms (22.7%), and emotional functioning/well-being (19.2%). Conclusions: This literature review provides a foundation for the development of an AYA-specific COS for improving the relevance and efficiency of measuring outcomes, the pooling of (international) research data, and the value of care for current and future AYAs with cancer. Finalization and refinement of the COS should be a priority for future research.

Purpose: Adolescent and young adult (AYA) malignant brain tumour (BT) survivors are at risk of adverse health outcomes, which may impact their health-related quality of life (HRQoL). This study aimed to investigate the (1) prevalence of physical and psychological adverse health outcomes, (2) the HRQoL, and (3) the association of adverse health outcomes and HRQoL among long-term AYA-BT survivors. Adverse health outcomes and HRQoL were compared to other AYA cancer (AYAC) survivors. Methods: A cross-sectional secondary data analysis of the SURVAYA study among 133 AYA-BT and 3877 AYAC survivors was conducted. Participant self-reported adverse health outcomes and HRQoL scores were analysed and compared between the two populations. Associations with HRQoL were assessed using linear regression modelling with AIC-based backward elimination. Results: AYA-BT survivors faced significant issues of fatigue (47.6%), future uncertainty (45.2%), and medical conditions like vision (34.4%), speech, taste, or smell (26.2%) impairments, cancer recurrence, and metastasis (25.4%). Neurocognitive symptoms were identified as BT-specific issues (13.6–33.6%). Compared to AYAC survivors, AYA-BT survivors reported significantly (p < 0.05) lower functioning scores on the role, cognitive, emotional, and social HRQoL, with cognitive (56.0%) and emotional (40.0%) domains being the most affected. Adverse health outcomes were negatively associated with HRQoL, ranging from small to large clinical relevance. Conclusion: Long-term AYA-BT survivors were identified as a highly burdened population, affected by multifaceted issues and multidimensional detriments in HRQoL years beyond their cancer diagnosis. This study highlights the necessity of long-term follow-up and a holistic, multidisciplinary approach to survivorship care to ultimately improve the quality of AYA-BT survivorship.

Background: Patients with head and neck sarcomas (HNS) face unique health‐related quality of life (HRQoL) challenges due to its disease rarity. This study examined and identified the prevalence of generic‐ and location‐specific HRQoL issues. Methods: Quantitative data from 72 HNS survivors (SURVSARC study), and qualitative data from 18 HNS patients (EORTC QoL VOICE study) were examined. Descriptive statistics was used for questionnaire data. Qualitative data was thematically analyzed. Results: Quantitative findings showed fatigue (68%), speaking issues (50%), and dry mouth (48%) as common problems. Qualitative findings supported quantitative results and highlighted HNS‐specific issues, including throat pain, impaired tongue mobility, and swelling in the face and neck. Conclusion: HNS patients share symptoms with other cancers, but location‐specific issues, such as lack of tongue mobility, require tailored measurement strategies. Combining generic (EORTC QLQ‐C30), location‐specific (EORTC QLQ‐H&N43) questionnaires, and an HNS‐specific item list provides a comprehensive HRQoL assessment for future research and clinical practice.