Maria Aagesen

Purpose: This study aimed to explore sexual health among young Danish cancer patients aged 18–39 years and to generate exploratory insights into how sexual health may differ by age, gender, treatment status, and treatment type. Methods: A descriptive observational study was conducted from January 2023 to September 2024. Participants completed the European Organization for Research and Treatment of Cancer Sexual Health Questionnaire. Sexual health outcomes were compared across age groups and gender, between participants undergoing treatment with those post-treatment, and participants that underwent surgery only versus those who received systemic treatment or/and radiation, with or without surgery. Results: Fifty-eight young adults participated (60.3% male, mean age 29 years); 67% had oncological cancers. The most frequently reported challenges involved communication with healthcare professionals, perceptions of femininity, and treatment’s impact on sexual activity. Female participants reported lower sexual satisfaction, reduced libido, more sexual pain, treatment impact on sexual activity, and higher fatigue than male participants. Those undergoing active treatment reported greater reduction of libido, treatment impact on sexual activity, and partner-related insecurity compared to those post-treatment. No considerable differences were found between age groups or treatment type. Conclusions: Young adults with cancer face sexual health challenges, regardless of age and treatment intensity. Female participants and those undergoing active treatment report a higher sexual health burden. These findings underscore the need for tailored interventions to address and support sexual health throughout the cancer trajectory.

Purpose: To explore the acceptability of the content and delivery of the age-specific cancer rehabilitation program Young Adults Taking Action (YATAC) from the perspective of young adult cancer survivors (YACSs). Methods: Nineteen YACSs (aged 18–39) participated. Program acceptability was explored through four focus groups. The Theoretical Framework of Acceptability guided data collection and analysis. Data from the focus groups were deductively analyzed using framework analysis. Results: The YACSs found the YATAC program acceptable and relevant to their needs. The participants reported enhanced physical self-efficacy, improved mood, greater acceptance of their condition, reduced loneliness, and increased confidence in managing daily life. Peer support, practical exercises, and tailored content were identified as particularly valuable. Referring to delivery acceptance, participants described the program format as engaging and supportive, though some found the intensive schedule burdensome. Few suggested removing content; instead, they recommended extending sessions and adding topics such as diet, fertility, and cognitive concerns. The participants also highlighted the need for clearer guidance on accessing resources after the program. Group discussions were generally beneficial; however, some participants expressed discomfort around discussing sensitive topics in mixed settings. Conclusion: The YATAC program was well received and perceived as beneficial by YACSs, particularly when sessions were practical, peer-supported, and individualized. The findings support the program’s continued development and refinement. Implications for Cancer Survivors: : This study highlights the importance of peer interaction and personalized content and thoughtful delivery design in survivorship care for young adults. Future research should explore long-term and wider outcomes.

Background: The EORTC Sexual Health Questionnaire (EORTC QLQ-SH22) assesses sexual health-related quality of life in adult cancer patients. However, it may not fully address age-dependent issues in young adults aged 18–39 at diagnosis. This study aimed to explore the questionnaire’s relevance and comprehensibility for young adults with cancer and identify topics needing elaboration or missing. Methodology: in: this cross-sectional study 60 young adults with cancer across treatment stages rated item relevance on a Likert scale and gave qualitative feedback through a “think-aloud” process and semi-structured interviews. Quantitative analyses examined item relevance using mean scores and predefined thresholds. Qualitative data were analysed using reflexive thematic analysis. Results: Twenty-one of the 22 items were rated relevant. Participants suggested refining wording to improve comprehensibility. Interviews indicated a need to expand coverage of intimacy, communication with professionals, body changes and body image, and partnership. Missing topics included singlehood, cancer before sexual debut, contraception and fertility, and gender diversity. Conclusions: The EORTC QLQ-SH22 is relevant for young adults with cancer but may be improved through clearer wording, elaboration of key topics, and inclusion of missing items. An international content validity study in this population is recommended to guide future development.

Purpose: This study evaluated the program delivery of a part of the age-specific intervention Young Adult Taking Action (YATAC), a rehabilitation program for young adult cancer survivors, focusing on dose, adherence, fidelity and adaptation. It also explored changes in health-related quality of life, fatigue, depression, anxiety, and loneliness. Methods: A one-armed feasibility study with 19 young adult cancer survivors (aged 18–39) involved in a multicomponent rehabilitation program a 5-day residential stay, a 10-week home-based period, and a 2-day follow-up. Program delivery data were collected during the stays, and patient-reported outcomes were assessed at baseline and 10 weeks. Changes were analyzed using the Wilcoxon signed-rank test, and responder analysis assessed minimal clinically relevant changes. Results: All sessions were delivered, with 100% of participants completing the five-day and a two-day stay. Adherence and fidelity were both 83%, though 30% of sessions reported time constraints. Significant improvements were observed in cognitive functioning ( p = 0.0046), fatigue ( p = 0.0066), and anxiety ( p = 0.0146). More participants showed minimal clinically relevant improvements in cognitive functioning (63%) than deteriorations. Fatigue was the only outcome with no reported clinically relevant deterioration. Conclusion: The tested part of the YATAC program demonstrated feasibility with high adherence and fidelity. Some adjustments to session duration and structure are needed. The program showed potential to improve cognitive function, fatigue, and anxiety, though findings should be interpreted cautiously due to the small sample size and one-armed design.

Background and purpose: Social inequality is a growing problem throughout the cancer trajectory. Since 2019, the Danish Research Center for Equality in Cancer (COMPAS) has therefore, through seven work packages developed and tested various methodologies, approaches, and interventions to promote social equality in cancer from diagnosis to end of life. This study aimed to synthesize the knowledge generated across the work packages to provide guiding principles for promoting social equity across the cancer trajectory. Material and methods: A group concept mapping study was conducted in Denmark between February and June 2023. Twenty-two employees from all COMPAS work packages brainstormed ideas on how to promote social equality across the cancer trajectory. Fourteen participants subsequently sorted and rated the ideas by importance. Multidimensional scaling analysis and hierarchical cluster analysis were used to generate a cluster rating map outlining principles for promoting social equality in cancer. These principles were validated by 10 participants during an in-person validation meeting. Discussions from both the brainstorming and validation meeting were recorded, transcribed verbatim, and analysed. Results: Eight principles comprising 162 ideas were identified. Four principles focused on the patient-provider level: (1) Person-centred approach, (2) Supportive interventions targeting vulnerable patients, (3) Communication, and (4) Screening for vulnerability. Four addressed the organizational and policy level: (5) Skills development and implementation, (6) Coherence across, (7) Organizational and cultural factors, and (8) Transportation and accessibility. Interpretation: Integrating these principles into future research and clinical practice may support efforts to reduce social inequities across the cancer trajectory.

Young adult cancer survivors, defined as individuals aged 18–39 who have completed primary curative treatment, face numerous age-specific biopsychosocial late effects that impact health-related quality of life negatively. Rehabilitation can enhance participation in life roles, work, leisure activities and health-related quality of life. However, there is a lack of age-specific cancer rehabilitation for this population, leaving many young adults with diminished self-efficacy in managing their challenges, resulting in unmet needs. This study aimed to co-produce and develop an age-specific, municipality-based cancer rehabilitation intervention programme to improve young adults’ self-efficacy and health-related quality of life. The development process was completed between September 2019 and June 2023 and followed Hawkins et al.’s three-staged framework for co-production: (1) A literature review and stakeholder consultations; (2) four workshops with 2–6 young adult cancer survivors, 3–4 professionals, and two researchers and one workshop with 20 young adult cancer survivors and two researchers to co-produce the name, component content, delivery methods and potential outcomes; and (3) Refinement of the programme and its programme theory. Key findings from each stage informed the subsequent stages. The Young Adults Taking ACtion programme was developed. It applies a person-centred approach and is grounded in social cognitive theory and experiential learning theory. It comprises one mandatory component, a needs assessment and goal setting that tailor which of the following seven components the young adults will receive: (1) everyday life, (2) physical activity, (3) psychological issues, (4) education and work, (5) sexuality and relationships, (6) funds and grants, and (7) family and friends. The programme is primarily group-based and will be delivered by an interdisciplinary team over 16 weeks. We co-produced a comprehensive, goal-oriented, and peer-based rehabilitation programme for young adult cancer survivors. The engagement of young adults and professionals ensured that the programme aligned with the population’s needs and preferences and was context specific. Thus, it is likely that the programme will be more realistic and feasible to implement in clinical practice. Young adult cancer survivors, defined as persons aged 18–39 who have completed primary curative treatment, constitute a unique group, as they are in a particular life phase forming the foundations of their lives. As a result, they face distinct age-specific challenges in their everyday life related to education, work, and social activities, which negatively impact their quality of life. Rehabilitation may address these challenges, however there is a lack of rehabilitation programmes specifically tailored for young adult cancer survivors. This paper describes the co-production and development of an age-specific and municipality-based cancer rehabilitation programme to improve young adult cancer survivors’ self-efficacy and health-related quality of life. The development included the following steps: (1) reviewing existing literature on cancer rehabilitation programmes for young adults and consulting with relevant stakeholders to gain insights into the target population and the context for implementation; (2) conducting four workshops involving 2–6 young adults, 3–4 professionals, and two researchers and one workshop with 20 young adults and two researchers to co-produce the programmes name, component content, delivery methods, and potential outcomes; and (3) Refine of the programme description. The co-produced programme, Young Adults Taking ACtion, includes one mandatory session for needs identification and goal setting that guides which of the following sessions the young adult cancer survivors will receive: (1) Everyday life, (2) Physical activity, (3) Psychological issues, (4) Education and work, (5) Sexuality and relationships, (6) Funding and grant, and (7) Family and friends.

Purpose This study aimed to explore the thoughts and experiences of young men with cancer regarding the risk of infertility and the oncofertility counseling they received at diagnosis and during their cancer trajectory. Methods This qualitative study was conducted from October 2023 to February 2024 at the Copenhagen University Hospital—Rigshospitalet. Inclusion criteria were male adolescents and young adults with cancer aged 15–29 years. We conducted fourteen individual, semi-structured, qualitative interviews with male adolescents and young adults with either leukemia, lymphoma, or testicular cancer. Data were analyzed using thematic analysis. Results Three themes were identified: (1) Young men with cancer have existential thoughts about future children; (2) young men call for information and communication about the risk of reduced fertility chances after cancer; (3) young men experience challenges related to cryopreservation of semen. Conclusion Young men desire children after cancer and fertility preservation offers reassurance. Psychological and physical fertility issues often impact body image and masculinity during cancer. Oncofertility counseling is limited, usually brief at diagnosis; however, discussions on treatment-related fertility challenges remain sparse during follow-up. Young men often experience stress related to fertility preservation at diagnosis, which they feel is not recognized by healthcare professionals. This underscores the need for better oncofertility education for healthcare professionals and closer collaboration between oncologists, hematologists, and fertility specialists.

Cancer survivors may be struggling to re‐create meaning in life. Addressing their personal sources of meaning can support them in this process. The sources of meaning card method (SoMeCaM) aims to map and explore personal sources of meaning in a 1‐h session. It includes 26 cards, each with a statement on a source of meaning. The purpose of this study was to validate the statements on the sources of meaning cards for use among participants in cancer rehabilitation by examining whether participants attribute the same meaning to the statements as intended. The three step test interview method was used to assess response processes to the sources of meaning cards among 12 participants in a 5‐day cancer rehabilitation program in Denmark. The interviews were transcribed verbatim and analyzed using framework analysis. Nineteen of the 26 statements were interpreted congruently, that is, in line with the underlying theory, by all participants. Issues of incongruency, ambiguity and confusion were observed in participants' interpretations of the statements on religiosity (n = 6), spirituality (n = 10), and reason (n = 6). Minor issues were observed for the statements on practicality, achievement, knowledge, and attentiveness. In most statements, cancer survivors' interpretation aligned with the underlying theory. Problems were apparent regarding the sources of meaning religiosity, spirituality and reason, and a reconsideration of the wording of the statements is recommended. These problems may be due to cultural and linguistic interpretations rather than to being a cancer survivor. Future studies could focus on these issues in other target populations. Despite these minor issues, the SoMeCaM has proven useful in addressing the important topic of meaning in life in the cancer rehabilitation setting. Clinicians should pay attention to nuances in participants' understanding of the cards.

Aim: The aim of this study was threefold: (1) to explore Danish adolescents and young adults’ (AYAs) thoughts concerning sexual health particularly focusing on sexuality, intimacy, and body image throughout a cancer trajectory, (2) to investigate how AYAs experience healthcare professionals address of- and respond to sexual health issues, and (3) to identify AYAs’ suggestions on how to support conversation about sexual health. Methods: A qualitative, single-center study was conducted, including AYAs (18–29 years) diagnosed with cancer recruited at the University Hospital of Copenhagen, Rigshospitalet. Individual semi-structured interviews were conducted from January–February 2023, recorded, transcribed verbatim, and analyzed using thematic analysis. Results: Twelve participants were interviewed, aged 20–29; five were diagnosed with hematological- and seven with oncological cancer. Our analyses yielded three themes: (1) sexuality and body image as part of the identity, (2) excluding relatives in conversations about sexual health, and (3) uncertainty how to discuss sexual health with healthcare professionals. Finally, the AYAs’ suggestions to support conversations about sexual health were organized into six thematic categories. Conclusion: In this study, participants experienced altered sexual subsequent impacts on body image and self-esteem during their cancer trajectory. While some adapted to these changes, discussing them with healthcare providers was difficult, especially in the presence of relatives, as the AYAs wanted to shield them from additional concerns. To enhance support, AYAs suggest regular discussions on sexual health and the use of a dialog tool by healthcare professionals.

Introduction: Globally, the focus on user involvement in health research has increased substantially. In Denmark, it is still at an early stage, with individual researchers being met with increasing demands without having much experience, guidance, or good practices to act upon. We are a group of researchers affiliated with User Perspectives and Community-based Interventions at the University of Southern Denmark and the Center for Research with Patients and Relatives (ForSa-P) at the Odense University Hospital. We work with patients and relatives in several aspects of our work – research and teaching; we share our experiences and learning in a joint session. This presentation describes a co-creation process of developing a rehabilitation programme for young adult cancer survivors (YACS) Background: Because of the cancer and late effects of treatment, YACS face numerous age-specific physical, psychological, existential, and social issues impacting participation in everyday life and decreasing their health-related quality of life (HRQoL). Rehabilitation may improve participation in life roles, leisure activities and work and thus, heighten HRQoL. However, YACS rehabilitation needs are not being adequately met and multicomponent age-specific rehabilitation for YACS is limited. Objective: To develop an evidence-based, age-specific, multicomponent, and peer-based rehabilitation programme involving YACS and relevant stakeholders aiming to improve YACS participation in everyday life and their HRQoL. Methods: The development process of the programme drawn on the Medical Research Council UK framework for developing and evaluating complex interventions and is inspired by Hawkins et al.’s three-staged framework for co-production. From September 2019 to March 2023, YACS, professionals and researchers co-developed a rehabilitation programme through three stages: 1) Evidence review and stakeholder consultations; 2) Co-production of the intervention by involving users in four workshops, and 3) Articulating the programme theory, developing an intervention manual, recruitment strategy and referral pathways and selecting outcome measures. Key findings from each stage were incorporated into the subsequently stage. Results: We developed a comprehensive goal-oriented and peer-based rehabilitation programme called the Young Adults Taking ACtion (YATAC). The programme draws on a person-centered approach, the Social Cognitive Theory, and John Dewey’s learning theory. It consists of nine components delivered by an interdisciplinary team: 1) Need assessment, 2) Goal setting, 3) Everyday life, 4) Physical activity, 5) Psychological issues, 6) Work and education, 7) Sexuality and relationship, 8) Rights and finance, 9) Friends and Family and 10) Peer-to-peer support. Further, outcome measures for the programme were chosen, recruitment strategies were described, and referral pathways were identified. The evaluation showed advantages and disadvantages and future points to pay attention to when participating in a co-production process. Conclusions: A multicomponent rehabilitation programme for YACS was developed involving the preferences and needs of YACS and stakeholders. Using co-production in the whole process of developing the programme will most likely lead to better evaluation and implementation in clinical practice. In addition, the comprehensive description of the development process and the knowledge derived from the process can inform future research of how to involve users in the development of rehabilitation interventions. Next step will be to feasibility test the programme.