Short summary

Young adults (18-39) with cancer face unique challenges affecting identity, relationships, social life, and career. No studies have examined QoL and age-specific needs during curatively intended radiotherapy. A prospective observational study will explore these aspects in Danish young adults during treatment and up to six months after.

Rationale

Young adulthood is a transformative life stage, marked by identity formation, education, and evolving social and romantic relationships. A cancer diagnosis and its treatments can lead to profound existential challenges and specific age-related concerns [1,2], significantly impacting QoL [3,4]. In Denmark, approximately 1,500 young adults aged 18-39 are diagnosed with cancer each year [5]. Among them, around one-third undergo curative intended radiotherapy, often over several weeks and sometimes in combination with systemic treatment. Despite the widespread use of radiotherapy in this group, national and international data on QoL among young adults receiving this treatment remain scarce. A recent scoping review from Corrigan et al. [6] highlighted the need for longitudinal studies comparing clinician-reported and patient-reported health-related QoL to better understand the specific needs of young adults with cancer. At the first National Adolescents and Young Adults Cancer research seminar (NAYACareDK) in October 2023, young adult patient representatives shared their experiences alongside researchers, emphasizing disparities in patient-centered interventions across hospitals. Many young adults reported feeling particularly vulnerable during radiotherapy, as exposure during treatment made them uncomfortable. They described a disconnect between their medicalized bodies-viewed by multiple healthcare professionals-and their personal perception of their bodies as sexual and intimate. Additionally, many felt isolated and unsupported due to a lack of systematic discussions about their needs before and during treatment. Until now, no standardized tool has been available to systematically assess QoL among young adults with cancer. However, the European Organization for Research and Treatment of Cancer (EORTC) has developed and validated the QLQ-AYA questionnaire, specifically designed for young adults with cancer [7]. This tool is expected to be available for clinical use by mid-2025. The primary aim of this study is to investigate the QoL and age-specific needs of Danish young adult cancer patients during and after curatively intended radiotherapy. This research will provide valuable insights into the population's unique challenges and help improve patient-centered care and support strategies.

Description of the cohort

Inclusion Criteria: - Patients diagnosed with cancer between the ages 18-39 (both inclusive) - Referred for curatively intended radiotherapy - Proficient in understanding, reading, and speaking Danish - Access to an internet-enabled electronic device Exclusion Criteria: - Individuals who are physically or cognitively unable to read, understand, or complete electronic questionnaires

Data and biological material

During the first week of curative intended radiotherapy, eligible young adults will receive verbal information about the study from the radiotherapists at the radiotherapy units. Written information about the study will also be provided at the radiotherapy unit. An appointment will then be scheduled to confirm verbal consent or refusal. The patient's decision (acceptance or decline) will be recorded in a screening log. For those who provide verbal consent, the local investigator (radiotherapist at the radiotherapy unit) will register them in a REDCap database [8] along with relevant treatment characteristics. Participants will then receive an electronic invitation via their public mailbox (E-Boks) [9], containing a link to detailed participant information and an electronic consent form. Upon providing written consent, participants will complete the baseline questionnaire, which includes demographic information and the first EORTC QLQ-AYA questionnaire. Subsequently, participants will be asked to complete the EORTC QLQ-AYA questionnaire again at mid-treatment, at the end of treatment, and at 1-, 3-, and 6-months post-radiotherapy.

Collaborating researchers and departments

Department of Oncology, Rigshospitalet

• Line Bentsen
• Daniella Østergaard
• Helle Pappot
• Kristina Funder
• Ivan Vogelius
• Ann Cristin Lund

Department of Oncology, OUH

• Lærke Tolstrup
• Pia Krause Møller
• Karina Gottlieb
• Maibritt Irene Thomsen

Department of Oncology, AAU

• Helle Enggaard

Danish Centre for Particle Therapy (DCPT), AU

• Anne Wilhøft Kristensen

Department of Oncology, Herlev hospital

• Helle Mathiasson
• Department of Oncology, Zealand university hospital, Næstved
• Malene Bøjesen
• Anette van Schaik

Department of oncology, Vejle sygehus

• Agnete Kaltoft
• Tina Sønderskov