Our research

The Patient-Centered Oncology Research Group is currently focusing on three principal research lines: 

1. Adolescent and Young Adult (AYA) Oncology
2. Rare Cancers 
3. Health Equity in Cancer Care and Research

1. Adolescent and Young Adult (AYA) Oncology

Adolescents and young adults (AYAs) diagnosed with cancer between the ages of 18 and 39 face distinct medical and psychosocial challenges specific to this life stage. Despite these unique needs, AYAs are typically treated within the adult cancer care system, which is dispersed across the Netherlands and lacks dedicated AYA-specific care.

Biologically, AYAs develop a wide range of tumour types, including paediatric cancers, tumours common in older adults, and cancer types specific to this age group. However, it remains largely unclear what makes these patients biologically unique and whether treatments should be tailored specifically for them. Advances in treatment have led to longer survival, even with an uncertain or poor cancer prognosis, bringing additional challenges such as coping with an uncertain future and premature mortality. Moreover, a growing number of AYA cancer survivors experience severe late effects, further emphasizing the need for specialized support.

Psychosocially, these individuals are navigating significant life milestones that bring age-specific challenges, such as career interruptions, concerns about maintaining social connections, and the difficulties of raising young children. The impact of sociodemographic and treatment-related risk factors, as well as external (lifestyle) and internal factors (genetics, biology, physiology), on age-specific health outcomes is still largely unknown. Gaining a deeper understanding of which AYAs are at risk for poor health outcomes and the reasons behind this can help inform the development of evidence-based, age-specific programs and guidelines, aimed at prevention, optimal treatment, and supportive care.

To address these gaps, we collaborate closely with patients and the AYA healthcare network, integrating questions raised by patients or healthcare professionals (refer to ayazorgnetwerk.nl & kanker.nl/jong). Our research utilizes patient-reported outcome (PRO) measures (both qualitative and quantitative), biological data (e.g., blood, hair and feces samples), real-world data (RWD) from sources like the Netherlands Cancer Registry and Statistics Netherlands, and federated learning. By analyzing different phases of the diagnostic and treatment trajectory, we aim to improve healthcare and quality of life for AYAs.  

2. Rare Cancers

Rare cancers, defined as those with an incidence of fewer than six cases per 100,000 people per year, account for approximately 24% of all cancer diagnoses [1,2]. Among rare cancers, sarcomas represent only 1% of adult tumours, with 4-5 cases per 100,000 people per year in Europe [1,3,4]. Despite their collective impact, these cancers often receive less research attention than more common malignancies, leading to challenges in diagnosis, treatment, and patient support [5]. Patients with rare solid cancers face additional burdens, such as limited treatment guidelines, fewer clinical trials, and geographical disparities in expertise.

Health-related quality of life (HRQoL) is a crucial aspect of cancer care, yet research on HRQoL in patients with rare solid cancers remains limited. Understanding and addressing their HRQoL is crucial to improving their care and overall well-being. Given the unique challenges these patients face — including late diagnosis, limited treatment options, and small, dispersed populations — understanding their HRQoL is essential for improving care and support strategies. Our research in rare cancers and sarcomas aims to address this gap by evaluating how HRQoL is assessed and measured in these populations and developing more tailored approaches for measurement. Likewise, we are investigating challenges in the diagnostic trajectories of these populations.  

By advancing HRQoL methodologies and addressing gaps in existing research, our work contributes to the development of more tailored and meaningful patient-reported outcome, improving patient-centred care for individuals with rare cancers and sarcomas. Future research will focus on creating, adapting, or validating rare cancer-specific HRQoL measures, integrating patient-reported outcomes into clinical decision-making, and fostering international collaborations to improve data collection and patient support. Throughout this work, we collaborate closely with the European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group to ensure the development of robust methodologies and meaningful patient-centered outcomes. 

3. Health Equity in Cancer Care and Research

Health equity plays an important role in ensuring that cancer care and research meet the needs of all population groups. Disparities in access, representation, and health outcomes continue to affect various underserved communities. Within our research group, we approach health equity from different but complementary perspectives. 

Our work focuses on addressing gaps in representation and support for groups such as sexual and gender minority (SGM) groups and individuals with a migration background. These populations are frequently underrepresented in cancer research and face distinct challenges in health care. We investigate how research tools and systems may unintentionally exclude certain groups, how cultural or systemic barriers shape patient experiences, and how engagement with patients can be strengthened to ensure that their voices are embedded at every stage of the research process. We employ diverse research methods to explore these issues and to broaden our understanding of the challenges involved. By working collaboratively across various domains, we aim to contribute to a more equitable and inclusive approach to cancer care and research.  

Future directions include expanding inclusive practices across institutions, building stronger community partnerships, and developing strategies that help embed health equity principles into everyday research and clinical practice. We believe collaboration and dialogue are essential to this work and welcome others who share our commitment to promoting cancer care and research that meet the diverse needs of all communities.