Publications

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

Financial difficulties experienced by patients with gastrointestinal stromal tumours (GIST) in the Netherlands: data from a cross-sectional multicentre study.

10-04-2024

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.

04-04-2024

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

Critical reviews in oncology/hematology

Patient-reported outcomes in randomized clinical trials of systemic therapy for advanced soft tissue sarcomas in adults: A systematic review.

04-04-2024

Health and quality of life outcomes

Acceptability and usefulness of the EORTC 'Write In three Symptoms/Problems' (WISP): a brief open-ended instrument for symptom assessment in cancer patients.

26-03-2024

ESMO open

Elements of successful patient involvement in clinical cancer trials: a review of the literature.

15-03-2024

Journal of cancer policy

The views of cancer patients of Turkish, Moroccan, Surinamese, and Dutch-Caribbean descent on diagnosis, treatment and prognosis: A systematic literature review.

01-03-2024

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

Assessing patients' needs in the follow-up after treatment for colorectal cancer-a mixed-method study.

26-02-2024

Cancer

Employment outcomes of adolescent and young adult (AYA) cancer survivors and their partners: A Dutch population-based study.

23-02-2024

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.

06-02-2024

ESMO open

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

01-02-2024

ESMO open

The increasing burden of testicular seminomas and non-seminomas in adolescents and young adults (AYAs): incidence, treatment, disease-specific survival and mortality trends in the Netherlands between 1989 and 2019.

01-02-2024

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

Health-related quality of life (HRQoL) after different axillary treatments in women with breast cancer: a 1-year longitudinal cohort study.

01-02-2024

The British journal of surgery

Author response to: Comment on: Oncological surgery follow-up and quality of life: meta-analysis.

31-01-2024

BMC cancer

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

24-01-2024

International journal of clinical and health psychology : IJCHP

Fear, anxiety and depression in gastrointestinal stromal tumor (GIST) patients in the Netherlands: Data from a cross-sectional multicenter study.

16-01-2024

Journal of cancer survivorship : research and practice

Adherence to the World Cancer Research Fund/American Institute for Cancer Research recommendations for cancer prevention in adolescent and young adult (AYA) cancer survivors: results from the SURVAYA study.

15-01-2024

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

Exploring the interconnectedness between health-related quality of life factors among long-term adolescent and young adult cancer survivors (AYAs): a network analysis.

13-01-2024

ESMO open

Long-term second primary cancer risk in adolescent and young adult (15-39 years) cancer survivors: a population-based study in the Netherlands between 1989 and 2018.

01-01-2024

Journal of clinical medicine

Same Journey, Different Paths: Caregiver Burden among Informal Caregivers of Adolescent and Young Adult Patients with an Uncertain or Poor Cancer Prognosis (UPCP).

27-12-2023

Endocrine

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

16-12-2023

Acta oncologica (Stockholm, Sweden)

The association of having a monitoring or blunting coping style with psychological distress, health-related quality of life and satisfaction with healthcare in gastrointestinal stromal tumour (GIST) patients.

01-12-2023

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

A qualitative study on the healthcare experiences of adolescents and young adults (AYA) with an uncertain or poor cancer prognosis.

27-11-2023

Journal of the National Cancer Institute

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

08-11-2023

Journal of cancer survivorship : research and practice

Patient-physician agreement on function and pain is associated with long-term outcomes in sarcoma: findings from a longitudinal study.

17-10-2023

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

Patient education and counseling

What makes patient involvement work? Lessons learned from a qualitative study in adolescents and young adults with cancer.

01-10-2023

Journal of patient-reported outcomes

Health-related quality of life of Adolescent and Young Adult Cancer Survivors before and during the COVID-19 pandemic: longitudinal improvements on social functioning and fatigue.

13-09-2023

Thyroid : official journal of the American Thyroid Association

International Phase IV Field Study for the Reliability and Validity of the European Organisation for Research and Treatment of Cancer Thyroid Cancer Module EORTC QLQ-THY34.

01-09-2023

Journal of cancer survivorship : research and practice

Phase III study of the European Organisation for Research and Treatment of Cancer Quality of Life cancer survivorship core questionnaire.

01-08-2023

Acta oncologica (Stockholm, Sweden)

Involving adolescents and young adults (AYA) with an uncertain or poor cancer prognosis as research partners.

01-08-2023

Thyroid research

Determinants and mediating mechanisms of quality of life and disease-specific symptoms among thyroid cancer patients: the design of the WaTCh study.

10-07-2023

European journal of paediatric neurology : EJPN : official journal of the European Paediatric Neurology Society

Health-related quality of life of children with neurofibromatosis type 1: Analysis of proxy-rated PedsQL and CHQ questionnaires.

01-07-2023

Cancers

Caring for Adolescents and Young Adults (AYA) with Cancer: A Scoping Review into Caregiver Burdens and Needs.

20-06-2023

Cancer medicine

Physical symptom burden in patients with desmoid-type fibromatosis and its impact on health-related quality of life and healthcare use.

01-06-2023

Cancer medicine

Learning from long-term adolescent and young adult (AYA) cancer survivors regarding their age-specific care needs to improve current AYA care programs.

01-06-2023

Annals of surgery

Health-related Quality of Life of Patients With Non-Intra-abdominal Desmoid-Type Fibromatosis During Active Surveillance: Results of a Prospective Observational Study.

01-06-2023

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

Psychological and social challenges of patients with locally advanced and metastatic gastrointestinal stromal tumours (GIST) on long-term treatment with tyrosine kinase inhibitors: a qualitative study with patients and medical oncologists.

26-05-2023

The British journal of surgery

Oncological surgery follow-up and quality of life: meta-analysis.

16-05-2023

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

Pregnancy-associated desmoid fibromatosis: A Dutch multi-centre retrospective study.

01-05-2023

Cancer

Impaired social functioning in adolescent and young adult sarcoma survivors: Prevalence and risk factors.

01-05-2023

Future oncology (London, England)

A patient's perspective on the side effects of tyrosine kinase inhibitors in the treatment of advanced and metastatic gastrointestinal stromal tumors.

01-02-2023

Journal of cancer survivorship : research and practice

Self-reported causes of cancer among 6881 survivors with 6 tumour types: results from the PROFILES registry.

01-02-2023

EClinicalMedicine

Desmoid is not a sarcoma; reply to Sachdev et al.

01-02-2023

Frontiers in psychology

"Double awareness"-adolescents and young adults coping with an uncertain or poor cancer prognosis: A qualitative study.

03-01-2023

Cancer medicine

AYAs' online information and eHealth needs: A comparison with healthcare professionals' perceptions.

01-01-2023

JMIR formative research

Sample Bias in Web-Based Patient-Generated Health Data of Dutch Patients With Gastrointestinal Stromal Tumor: Survey Study.

15-12-2022

Cancers

Fear of Cancer Recurrence in Sarcoma Survivors: Results from the SURVSARC Study.

11-12-2022

Frontiers in oncology

"Finding my way in a maze while the clock is ticking": The daily life challenges of adolescents and young adults with an uncertain or poor cancer prognosis.

03-12-2022

Cancers

A Negative Body Image among Adolescent and Young Adult (AYA) Cancer Survivors: Results from the Population-Based SURVAYA Study.

26-10-2022