Publications

Journal of cancer survivorship : research and practice

Hospitalization for medical conditions in adolescent and young adult cancer survivors: a nationwide cohort study using the Netherlands Cancer Registry.

07-03-2026

Health and quality of life outcomes

Incorporating patients' input in the development and validation of patient-reported outcome measures in oncology: a comprehensive scoping review.

18-02-2026

Cancers

Understanding the Experiences of Adolescents and Young Adults Diagnosed with Cancer During Higher Education-An Exploratory Interview Study.

20-01-2026

The British journal of surgery

Health-related quality of life of patients undergoing active surveillance versus standard surgery for oesophageal cancer (SANO trial).

24-12-2025

Journal of cancer survivorship : research and practice

Health-related conditions among long-term cancer survivors diagnosed in adolescence and young adulthood (AYA): results of the SURVAYA study.

01-12-2025

JAMA network open

Development of a Health-Related Quality of Life Tool for Adolescents and Young Adults With Cancer.

01-12-2025

EClinicalMedicine

Health-related quality of life in patients with advanced soft tissue sarcoma receiving first-line palliative chemotherapy (HOLISTIC): longitudinal results from a prospective, observational cohort study.

01-11-2025

Journal of cancer survivorship : research and practice

'There is still a part of me that would love to be the old me again', how do adolescents and young adults (AYA) experience cancer-related bodily changes: a phenomenological interview study.

01-10-2025

Journal of cancer survivorship : research and practice

Pre-treatment fertility preservation and post-treatment reproduction in long-term survivors of adolescent and young adult (AYA) cancer.

01-08-2025

Studies in health technology and informatics

From Federated Learning to Publicly Facing Platform; Proof-of-Concept of the STRONG AYA Information Portal.

15-05-2025

ESMO open

Adolescent and young adult (AYA) patient involvement and engagement in European health care and research projects: expanding the scope of patient advocacy.

01-03-2025

Neuro-oncology practice

"Aiming at a moving target"-The daily life experiences of adolescents and young adults with a low-grade glioma.

01-02-2025

Health policy and technology

Perspectives on access to imaging digital health records in oncology: A mixed methods systematic review.

01-11-2024

Endocrine

The impact of electronic versus paper-based data capture on data collection logistics and on missing scores in thyroid cancer patients.

01-05-2024

The oncologist

Patient-Reported Outcomes of Accelerated Aging: A Novel Approach to Investigate Second Cancer Risk in Adolescent and Young Adult (18-39 Years) Cancer Survivors.

04-04-2024

ESMO open

Sexual quality of life of adolescents and young adult breast cancer survivors.

01-02-2024

BMC cancer

Protocol for the development of a Core Outcome Set (COS) for Adolescents and Young Adults (AYAs) with cancer.

24-01-2024

Journal of the National Cancer Institute

Financial outcomes of adolescent and young adult cancer survivors: a longitudinal population-based registry study.

08-11-2023

BMJ open

Patient-led home-based follow-up after surgery for colorectal cancer: the protocol of the prospective, multicentre FUTURE-primary implementation study.

12-10-2023

Journal of the National Cancer Institute

Measuring Clinical, Biological, and Behavioral Variables to Elucidate Trajectories of Patient-Reported Outcomes: The PROFILES Registry.

13-06-2022

Cancers

Health-Related Quality of Life and Side Effects in Gastrointestinal Stromal Tumor (GIST) Patients Treated with Tyrosine Kinase Inhibitors: A Systematic Review of the Literature.

05-04-2022

Journal of cancer survivorship : research and practice

Self-perceived cognitive functioning and quality of life among cancer survivors: results from the PROFILES registry.

01-04-2022

European journal of surgical oncology : the journal of the European Society of Surgical Oncology and the British Association of Surgical Oncology

Health-related quality of life after isolated limb perfusion compared to extended resection, or amputation for locally advanced extremity sarcoma: Is a limb salvage strategy worth the effort?

01-03-2022

Journal of clinical medicine

Describing Unmet Supportive Care Needs among Young Adults with Cancer (25-39 Years) and the Relationship with Health-Related Quality of Life, Psychological Distress, and Illness Cognitions.

28-09-2021

Cancers

Diagnosed with a Rare Cancer: Experiences of Adult Sarcoma Survivors with the Healthcare System-Results from the SURVSARC Study.

08-02-2021

JAMA oncology

Perceived Care and Well-being of Patients With Cancer and Matched Norm Participants in the COVID-19 Crisis: Results of a Survey of Participants in the Dutch PROFILES Registry.

01-02-2021

Cancers

Incidence, Survival, and Mortality Trends of Cancers Diagnosed in Adolescents and Young Adults (15-39 Years): A Population-Based Study in The Netherlands 1990-2016.

18-11-2020

Sarcoma

Assessing the Desmoid-Type Fibromatosis Patients' Voice: Comparison of Health-Related Quality of Life Experiences from Patients of Two Countries.

11-08-2020

Cancers

The Perceived Impact of Length of the Diagnostic Pathway Is Associated with Health-Related Quality of Life of Sarcoma Survivors: Results from the Dutch Nationwide SURVSARC Study.

28-07-2020

Journal of adolescent and young adult oncology

Psychological Distress and Illness Perceptions in Thyroid Cancer Survivors: Does Age Matter?

01-06-2020

BMJ open

Health-related quality Of Life In patients with advanced Soft TIssue sarcomas treated with Chemotherapy (The HOLISTIC study): protocol for an international observational cohort study.

01-06-2020

ESMO open

The sarcoma diagnostic interval: a systematic review on length, contributing factors and patient outcomes.

01-02-2020

Clinical oncology (Royal College of Radiologists (Great Britain))

Embryonal and Alveolar Rhabdomyosarcoma in Adults: Real-Life Data From a Tertiary Sarcoma Centre.

01-01-2020

Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer

Health-related quality of life among cancer patients in their last year of life: results from the PROFILES registry.

01-10-2018