Publications

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

BMJ open

Quality of life and experiences of sarcoma trajectories (the QUEST study): protocol for an international observational cohort study on diagnostic pathways of sarcoma patients.

26-10-2020

Cancers

Unraveling the Heterogeneity of Sarcoma Survivors' Health-Related Quality of Life Regarding Primary Sarcoma Location: Results from the SURVSARC Study.

22-10-2020

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

The complexity of assessing health-related quality of life among sarcoma patients.

01-10-2020

ESMO open

Unravelling the heterogeneity of soft tissue and bone sarcoma patients' health-related quality of life: a systematic literature review with focus on tumour location.

01-10-2020

Head & neck

Negative illness perceptions are related to poorer health-related quality of life among thyroid cancer survivors: Results from the PROFILES registry.

01-09-2020

Sarcoma

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

11-08-2020

Acta oncologica (Stockholm, Sweden)

Health-related quality of life and symptom burden of epithelioid hemangioendothelioma patients: a global patient-driven Facebook study in a very rare malignancy.

01-08-2020

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

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

Assessing health-related quality of life in cancer survivors: factors impacting on EORTC QLU-C10D-derived utility values.

01-06-2020

Head & neck

Methotrexate plus or minus cetuximab as first-line treatment in a recurrent or metastatic (R/M) squamous cell carcinoma population of the head and neck (SCCHN), unfit for cisplatin combination treatment, a phase Ib-randomized phase II study Commence.

01-05-2020

Journal of adolescent and young adult oncology

Exploring Communication About Intimacy and Sexuality: What Are the Preferences of Adolescents and Young Adults with Cancer and Their Health Care Professionals?

01-04-2020

The oncologist

The EORTC QLQ-C30 Summary Score as Prognostic Factor for Survival of Patients with Cancer in the "Real-World": Results from the Population-Based PROFILES Registry.

01-04-2020

European journal of endocrinology

The effect of treatment on quality of life in patients with acromegaly: a prospective study.

01-03-2020

ESMO open

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

01-02-2020

Trials

Evaluating a digital tool for supporting breast cancer patients: a randomized controlled trial protocol (ADAPT).

15-01-2020

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

Annals of surgical oncology

Outcome of Primary Desmoid Tumors at All Anatomic Locations Initially Managed with Active Surveillance.

01-12-2019

Acta oncologica (Stockholm, Sweden)

Having co-morbid cardiovascular disease at time of cancer diagnosis: already one step behind when it comes to HRQoL?

01-12-2019

Cancers

Prognostic Factors in a Large Nationwide Cohort of Histologically Confirmed Primary and Secondary Angiosarcomas.

12-11-2019