Publications

Pediatric blood & cancer

Clinical trials in desmoid-type fibromatosis in children and adults: A systematic review.

01-09-2022

Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation

Identifying health-related quality of life cut-off scores that indicate the need for supportive care in young adults with cancer.

01-09-2022

Endocrine connections

Health-related quality of life following FDG-PET/CT for cytological indeterminate thyroid nodules.

01-08-2022

ESMO open

Short- and long-term impact of cancer on employment and financial outcomes of adolescents and young adults (AYAs): a large population-based case-control registry study in the Netherlands.

01-08-2022

Current oncology (Toronto, Ont.)

Recruiting Adolescent and Young Adult Cancer Survivors for Patient-Reported Outcome Research: Experiences and Sample Characteristics of the SURVAYA Study.

29-07-2022

Research involvement and engagement

A qualitative study on the involvement of adolescents and young adults (AYAs) with cancer during multiple research phases: "plan, structure, and discuss".

08-07-2022

Cancers

Unraveling Desmoid-Type Fibromatosis-Specific Health-Related Quality of Life: Who Is at Risk for Poor Outcomes.

16-06-2022

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

ESMO open

Setting the international research agenda for sarcoma together with patients and carers: first results of the Sarcoma Patient EuroNet (SPAEN) priority setting partnership.

01-06-2022

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

Symptoms reported by gastrointestinal stromal tumour (GIST) patients on imatinib treatment: combining questionnaire and forum data.

01-06-2022

ESMO open

A qualitative study on the challenges health care professionals face when caring for adolescents and young adults with an uncertain and/or poor cancer prognosis.

01-06-2022

Cancer

Switching the scope from "how to identify cancer survivors" to "who is participating in cancer survivorship research": A proposal for a new focus.

15-05-2022

Health and quality of life outcomes

'I thought I had fibroids, and now I don't': a mixed method study on health-related quality of life in uterine sarcoma patients.

20-04-2022

Journal of the National Cancer Institute

Next Step for Global Adolescent and Young Adult Oncology: A Core Patient-Centered Outcome Set.

11-04-2022

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

Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation

Assessing measurement invariance in the EORTC QLQ-C30.

01-03-2022

Cancers

'Let Me Know If There's Anything I Can Do for You', the Development of a Mobile Application for Adolescents and Young Adults (AYAs) with Cancer and Their Loved Ones to Reconnect after Diagnosis.

24-02-2022

Cancers

Development of a Disease-Specific Health-Related Quality of Life Questionnaire (DTF-QoL) for Patients with Desmoid-Type Fibromatosis.

29-01-2022

Cancers

Development and Evaluation of the Canteen Connect Online Health Community: Using a Participatory Design Approach in Meeting the Needs of Young People Impacted by Cancer.

23-12-2021

Cancers

Differences in Internet Use and eHealth Needs of Adolescent and Young Adult Versus Older Cancer Patients; Results from the PROFILES Registry.

16-12-2021

Cancer

Symptom clusters in 1330 survivors of 7 cancer types from the PROFILES registry: A network analysis.

15-12-2021

Journal of adolescent and young adult oncology

Evaluation of a Positive Psychology Group Intervention in Nature for Young Cancer Survivors to Promote Well-Being and Post-Cancer Identity Development.

01-12-2021

Journal of clinical medicine

Health-Related Quality of Life Issues Experienced by Thoracic and Breast Sarcoma Patients: A Rare and Understudied Group.

16-11-2021

European journal of cancer care

Supportive care needs of patients living with an extremely rare and unpredictable cancer: The Epithelioid Haemangioendothelioma patient experience.

01-11-2021

European journal of cancer care

Unmet supportive care needs of patients with rare cancer: A systematic review.

01-11-2021

Journal of clinical medicine

The Prolonged Diagnostic Pathway of Young Adults (Aged 25-39) with Cancer in the United Kingdom: Results from the Young Adult Cancer Patient Journey Study.

11-10-2021

ESMO open

Priorities and preferences of advanced soft tissue sarcoma patients starting palliative chemotherapy: baseline results from the HOLISTIC study.

01-10-2021

European journal of cancer (Oxford, England : 1990)

Sex-differences in symptoms and functioning in >5000 cancer survivors: Results from the PROFILES registry.

01-10-2021

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

Adolescent and Young Adult (AYA) Cancer Survivorship Practices: An Overview.

28-09-2021

European journal of cancer care

'This is not part of my life plan': A qualitative study on the psychosocial experiences and practical challenges in young adults with cancer age 25 to 39 years at diagnosis.

01-09-2021

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

Beyond Teenage and Young Adult Cancer Care: Care Experiences of Patients Aged 25-39 Years Old in the UK National Health Service.

01-08-2021

Journal of adolescent and young adult oncology

Lessons for Employing Participatory Design When Developing Care for Young People with Cancer: A Qualitative Multiple-Case Study.

01-08-2021

Cancers

The Evaluation of Health-Related Quality of Life Issues Experienced by Patients with Desmoid-Type Fibromatosis (The QUALIFIED Study)-A Protocol for an International Cohort Study.

22-06-2021

Cancer

The importance of a collaborative health-related quality of life measurement strategy for adolescents and young adults with cancer.

15-05-2021

Cancers

Comprehensive Assessment of Incidence, Risk Factors, and Mechanisms of Impaired Medical and Psychosocial Health Outcomes among Adolescents and Young Adults with Cancer: Protocol of the Prospective Observational COMPRAYA Cohort Study.

13-05-2021

Journal of clinical medicine

Health-Related Quality of Life Issues in Adolescents and Young Adults with Cancer: Discrepancies with the Perceptions of Health Care Professionals.

22-04-2021

Cancers

Exploring Older Women's Attitudes to and Experience of Treatment for Advanced Ovarian Cancer: A Qualitative Phenomenological Study.

10-03-2021

Journal of the National Comprehensive Cancer Network : JNCCN

Adolescents and Young Adults Living With an Uncertain or Poor Cancer Prognosis: The "New" Lost Tribe.

02-03-2021

Journal of clinical oncology : official journal of the American Society of Clinical Oncology

Clinical Trials for Real-World Elderly Patients With Metastatic Soft-Tissue Sarcomas: The Importance of Study Design and Patient-Reported Outcomes.

01-03-2021

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

ESMO open

The age-related impact of surviving sarcoma on health-related quality of life: data from the SURVSARC study.

01-02-2021

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

Diagnosed with a common cancer at an unusual age: causal attributions of survivors of adolescent and young adult colorectal cancer.

01-01-2021

Cancers

Incorporating the Patient Voice in Sarcoma Research: How Can We Assess Health-Related Quality of Life in This Heterogeneous Group of Patients? A Study Protocol.

22-12-2020

Cancer

Patient and diagnostic intervals of survivors of sarcoma: Results from the SURVSARC study.

15-12-2020

The Journal of clinical endocrinology and metabolism

Quality of Life in Patients With Hypoparathyroidism After Treatment for Thyroid Cancer.

01-12-2020

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