Publications

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

Oral oncology

Health-related quality of life of patients treated with chemoradiotherapy plus or minus prophylactic antibiotics to reduce the number of pneumonias for locally advanced head and neck cancer, the PANTAP study.

01-09-2019

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

Presence of gastro-intestinal symptoms in ovarian cancer patients during survivorship: a cross-sectional study from the PROFILES registry.

01-06-2019

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

Cancer survivors not participating in observational patient-reported outcome studies have a lower survival compared to participants: the population-based PROFILES registry.

01-12-2018

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

Identification and assessment of health-related quality of life issues in patients with sporadic desmoid-type fibromatosis: a literature review and focus group study.

01-12-2018

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

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

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.

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

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

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.

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

'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.

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

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

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.

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

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.

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

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

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

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

Diagnosed with a Rare Cancer: Experiences of Adult Sarcoma Survivors with the Healthcare System-Results from the SURVSARC Study.

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.

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

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

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.

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

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

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.

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

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

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

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

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

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

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

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.

Psychological Distress and Illness Perceptions in Thyroid Cancer Survivors: Does Age Matter?

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.

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

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.

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

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.

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

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

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

Embryonal and Alveolar Rhabdomyosarcoma in Adults: Real-Life Data From a Tertiary Sarcoma Centre.

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

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

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

Health-related quality of life of patients treated with chemoradiotherapy plus or minus prophylactic antibiotics to reduce the number of pneumonias for locally advanced head and neck cancer, the PANTAP study.

Presence of gastro-intestinal symptoms in ovarian cancer patients during survivorship: a cross-sectional study from the PROFILES registry.

Cancer survivors not participating in observational patient-reported outcome studies have a lower survival compared to participants: the population-based PROFILES registry.

Identification and assessment of health-related quality of life issues in patients with sporadic desmoid-type fibromatosis: a literature review and focus group study.

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