Publications

The oncologist

Barriers to publishing early phase clinical trials: the oncologists' perspective.

04-04-2025

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

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

Double burden: financial toxicity in patients with advanced soft tissue sarcoma at the start of first-line palliative chemotherapy: baseline data from the HOLISTIC study.

27-02-2025

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

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.

01-02-2025

Cancers

Core Patient-Centered Outcomes for Adolescents and Young Adults with Cancer: A Comprehensive Review of the Literature from the STRONG-AYA Project.

28-01-2025

JMIR cancer

A Machine Learning Approach Using Topic Modeling to Identify and Assess Experiences of Patients With Colorectal Cancer: Explorative Study.

27-01-2025

Cancers

Health-Related Quality of Life (HRQoL) Assessments in Research on Patients with Adult Rare Solid Cancers: A State-of-the-Art Review.

24-01-2025

Current oncology (Toronto, Ont.)

Patient-Centered Care for Adolescents and Young Adults with an Uncertain or Poor Cancer Prognosis: A Secondary Analysis of What Is Needed According to Patients, Caregivers, and Healthcare Providers.

21-01-2025

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

Adverse health outcomes and health-related quality of life (HRQoL) among long-term adolescent and young adult (AYA) brain tumour survivors: results from the population-based SURVAYA study.

14-01-2025

JCO clinical cancer informatics

Actionability of Synthetic Data in a Heterogeneous and Rare Health Care Demographic: Adolescents and Young Adults With Cancer.

01-12-2024

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

Diagnostic trajectories of patients with rare cancer in the Netherlands: results from a nationwide cross-sectional survey.

19-11-2024

Health policy and technology

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

01-11-2024

Thyroid : official journal of the American Thyroid Association

The Cancer-Specific Health Economic Measure QLU-C10D is Valid and Responsive for Assessing Health Utility in Patients with Thyroid Cancer.

01-11-2024

European journal of cancer (Oxford, England : 1990)

Improving completion rates of patient-reported outcome measures in cancer clinical trials: Scoping review investigating the implications for trial designs.

01-11-2024

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

Evaluating a digital tool for supporting people affected by breast cancer: a prospective randomized controlled trial-the ADAPT study.

21-10-2024

BMC cancer

Setting the international research agenda for sarcomas with patients and carers: results of phase II of the Sarcoma Patient Advocacy Global Network (SPAGN) priority setting partnership.

06-08-2024

Colorectal disease : the official journal of the Association of Coloproctology of Great Britain and Ireland

Feasibility, reliability and satisfaction of (automated) capillary carcinoembryonic antigen measurements for future home-based blood sampling: the prospective CASA-I study.

01-08-2024

Journal of surgical oncology

The prediagnostic general practitioner care of sarcoma patients: A real-world data study.

01-08-2024

JAMA oncology

Current Management of Desmoid Tumors: A Review.

01-08-2024

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

The association of cognitive coping style with patient preferences in a patient-led follow-up study among colorectal cancer survivors.

01-08-2024

Cancer

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

01-07-2024

JCO clinical cancer informatics

Improving Diagnosis and Care for Patients With Sarcoma: Do Real-World General Practitioners Data and Prospective Data Collections Have a Place Next to Clinical Trials?

01-06-2024

ESMO real world data and digital oncology

Health-related quality of life in patients with gastrointestinal stromal tumor: data from a real-world cohort compared with a normative population.

01-06-2024

Cancers

Internal Responsiveness of EQ-5D-5L and EORTC QLQ-C30 in Dutch Breast Cancer Patients during the First Year Post-Surgery: A Longitudinal Cohort Study.

21-05-2024

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

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.

01-05-2024

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

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

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

01-04-2024

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

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

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

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

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

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

Barriers to publishing early phase clinical trials: the oncologists' perspective.

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

Double burden: financial toxicity in patients with advanced soft tissue sarcoma at the start of first-line palliative chemotherapy: baseline data from the HOLISTIC study.

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

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

Core Patient-Centered Outcomes for Adolescents and Young Adults with Cancer: A Comprehensive Review of the Literature from the STRONG-AYA Project.

A Machine Learning Approach Using Topic Modeling to Identify and Assess Experiences of Patients With Colorectal Cancer: Explorative Study.

Health-Related Quality of Life (HRQoL) Assessments in Research on Patients with Adult Rare Solid Cancers: A State-of-the-Art Review.

Patient-Centered Care for Adolescents and Young Adults with an Uncertain or Poor Cancer Prognosis: A Secondary Analysis of What Is Needed According to Patients, Caregivers, and Healthcare Providers.

Adverse health outcomes and health-related quality of life (HRQoL) among long-term adolescent and young adult (AYA) brain tumour survivors: results from the population-based SURVAYA study.

Actionability of Synthetic Data in a Heterogeneous and Rare Health Care Demographic: Adolescents and Young Adults With Cancer.

Diagnostic trajectories of patients with rare cancer in the Netherlands: results from a nationwide cross-sectional survey.

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

The Cancer-Specific Health Economic Measure QLU-C10D is Valid and Responsive for Assessing Health Utility in Patients with Thyroid Cancer.

Improving completion rates of patient-reported outcome measures in cancer clinical trials: Scoping review investigating the implications for trial designs.

Evaluating a digital tool for supporting people affected by breast cancer: a prospective randomized controlled trial-the ADAPT study.

Setting the international research agenda for sarcomas with patients and carers: results of phase II of the Sarcoma Patient Advocacy Global Network (SPAGN) priority setting partnership.

Feasibility, reliability and satisfaction of (automated) capillary carcinoembryonic antigen measurements for future home-based blood sampling: the prospective CASA-I study.

The prediagnostic general practitioner care of sarcoma patients: A real-world data study.

Current Management of Desmoid Tumors: A Review.

The association of cognitive coping style with patient preferences in a patient-led follow-up study among colorectal cancer survivors.

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

Improving Diagnosis and Care for Patients With Sarcoma: Do Real-World General Practitioners Data and Prospective Data Collections Have a Place Next to Clinical Trials?

Health-related quality of life in patients with gastrointestinal stromal tumor: data from a real-world cohort compared with a normative population.

Internal Responsiveness of EQ-5D-5L and EORTC QLQ-C30 in Dutch Breast Cancer Patients during the First Year Post-Surgery: A Longitudinal Cohort Study.

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

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

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

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

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

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

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

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

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

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.

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

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

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

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

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

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.

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

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.

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

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

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

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

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.

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.

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

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