Publications

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

Patient education and counseling

Through the lens of oncologists when communicating with non-Western migrants about cancer diagnosis, treatment, and prognosis: Results from a Dutch online survey.

01-05-2025

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

Long-term health-related quality of life among adolescent and young adult breast cancer survivors.

01-05-2025

Acta oncologica (Stockholm, Sweden)

Development and the need for implementation of a health-related quality of life measurement strategy for patients with soft tissue sarcoma undergoing preoperative radiotherapy.

30-04-2025

Cancers

The Prediagnostic General Practitioners' Pathway of Gastrointestinal Stromal Tumor Patients: A Real-World Data Study.

22-04-2025

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

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

Through the lens of oncologists when communicating with non-Western migrants about cancer diagnosis, treatment, and prognosis: Results from a Dutch online survey.

Long-term health-related quality of life among adolescent and young adult breast cancer survivors.

Development and the need for implementation of a health-related quality of life measurement strategy for patients with soft tissue sarcoma undergoing preoperative radiotherapy.

The Prediagnostic General Practitioners' Pathway of Gastrointestinal Stromal Tumor Patients: A Real-World Data Study.

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.

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