Publications

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

Pediatric blood & cancer

Clinical trials in desmoid-type fibromatosis in children and adults: A systematic review.

01-09-2022

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

Identifying health-related quality of life cut-off scores that indicate the need for supportive care in young adults with cancer.

01-09-2022

Endocrine connections

Health-related quality of life following FDG-PET/CT for cytological indeterminate thyroid nodules.

01-08-2022

ESMO open

Short- and long-term impact of cancer on employment and financial outcomes of adolescents and young adults (AYAs): a large population-based case-control registry study in the Netherlands.

01-08-2022

Current oncology (Toronto, Ont.)

Recruiting Adolescent and Young Adult Cancer Survivors for Patient-Reported Outcome Research: Experiences and Sample Characteristics of the SURVAYA Study.

29-07-2022

Research involvement and engagement

A qualitative study on the involvement of adolescents and young adults (AYAs) with cancer during multiple research phases: "plan, structure, and discuss".

08-07-2022

Cancers

Unraveling Desmoid-Type Fibromatosis-Specific Health-Related Quality of Life: Who Is at Risk for Poor Outcomes.

16-06-2022

Journal of the National Cancer Institute

Measuring Clinical, Biological, and Behavioral Variables to Elucidate Trajectories of Patient-Reported Outcomes: The PROFILES Registry.

13-06-2022

ESMO open

Setting the international research agenda for sarcoma together with patients and carers: first results of the Sarcoma Patient EuroNet (SPAEN) priority setting partnership.

01-06-2022

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

Symptoms reported by gastrointestinal stromal tumour (GIST) patients on imatinib treatment: combining questionnaire and forum data.

01-06-2022

ESMO open

A qualitative study on the challenges health care professionals face when caring for adolescents and young adults with an uncertain and/or poor cancer prognosis.

01-06-2022

Cancer

Switching the scope from "how to identify cancer survivors" to "who is participating in cancer survivorship research": A proposal for a new focus.

15-05-2022

Health and quality of life outcomes

'I thought I had fibroids, and now I don't': a mixed method study on health-related quality of life in uterine sarcoma patients.

20-04-2022

Journal of the National Cancer Institute

Next Step for Global Adolescent and Young Adult Oncology: A Core Patient-Centered Outcome Set.

11-04-2022

Cancers

Health-Related Quality of Life and Side Effects in Gastrointestinal Stromal Tumor (GIST) Patients Treated with Tyrosine Kinase Inhibitors: A Systematic Review of the Literature.

05-04-2022

Journal of cancer survivorship : research and practice

Self-perceived cognitive functioning and quality of life among cancer survivors: results from the PROFILES registry.

01-04-2022

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

Health-related quality of life after isolated limb perfusion compared to extended resection, or amputation for locally advanced extremity sarcoma: Is a limb salvage strategy worth the effort?

01-03-2022

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

Assessing measurement invariance in the EORTC QLQ-C30.

01-03-2022

Cancers

'Let Me Know If There's Anything I Can Do for You', the Development of a Mobile Application for Adolescents and Young Adults (AYAs) with Cancer and Their Loved Ones to Reconnect after Diagnosis.

24-02-2022

Cancers

Development of a Disease-Specific Health-Related Quality of Life Questionnaire (DTF-QoL) for Patients with Desmoid-Type Fibromatosis.

29-01-2022

Cancers

Development and Evaluation of the Canteen Connect Online Health Community: Using a Participatory Design Approach in Meeting the Needs of Young People Impacted by Cancer.

23-12-2021

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

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

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

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

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

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

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

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

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.

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

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

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

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

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

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

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

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

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

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

"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.

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

Clinical trials in desmoid-type fibromatosis in children and adults: A systematic review.

Identifying health-related quality of life cut-off scores that indicate the need for supportive care in young adults with cancer.

Health-related quality of life following FDG-PET/CT for cytological indeterminate thyroid nodules.

Short- and long-term impact of cancer on employment and financial outcomes of adolescents and young adults (AYAs): a large population-based case-control registry study in the Netherlands.

Recruiting Adolescent and Young Adult Cancer Survivors for Patient-Reported Outcome Research: Experiences and Sample Characteristics of the SURVAYA Study.

A qualitative study on the involvement of adolescents and young adults (AYAs) with cancer during multiple research phases: "plan, structure, and discuss".

Unraveling Desmoid-Type Fibromatosis-Specific Health-Related Quality of Life: Who Is at Risk for Poor Outcomes.

Measuring Clinical, Biological, and Behavioral Variables to Elucidate Trajectories of Patient-Reported Outcomes: The PROFILES Registry.

Setting the international research agenda for sarcoma together with patients and carers: first results of the Sarcoma Patient EuroNet (SPAEN) priority setting partnership.

Symptoms reported by gastrointestinal stromal tumour (GIST) patients on imatinib treatment: combining questionnaire and forum data.

A qualitative study on the challenges health care professionals face when caring for adolescents and young adults with an uncertain and/or poor cancer prognosis.

Switching the scope from "how to identify cancer survivors" to "who is participating in cancer survivorship research": A proposal for a new focus.

'I thought I had fibroids, and now I don't': a mixed method study on health-related quality of life in uterine sarcoma patients.

Next Step for Global Adolescent and Young Adult Oncology: A Core Patient-Centered Outcome Set.

Health-Related Quality of Life and Side Effects in Gastrointestinal Stromal Tumor (GIST) Patients Treated with Tyrosine Kinase Inhibitors: A Systematic Review of the Literature.

Self-perceived cognitive functioning and quality of life among cancer survivors: results from the PROFILES registry.

Health-related quality of life after isolated limb perfusion compared to extended resection, or amputation for locally advanced extremity sarcoma: Is a limb salvage strategy worth the effort?

Assessing measurement invariance in the EORTC QLQ-C30.

'Let Me Know If There's Anything I Can Do for You', the Development of a Mobile Application for Adolescents and Young Adults (AYAs) with Cancer and Their Loved Ones to Reconnect after Diagnosis.

Development of a Disease-Specific Health-Related Quality of Life Questionnaire (DTF-QoL) for Patients with Desmoid-Type Fibromatosis.

Development and Evaluation of the Canteen Connect Online Health Community: Using a Participatory Design Approach in Meeting the Needs of Young People Impacted by Cancer.

Differences in Internet Use and eHealth Needs of Adolescent and Young Adult Versus Older Cancer Patients; Results from the PROFILES Registry.

Symptom clusters in 1330 survivors of 7 cancer types from the PROFILES registry: A network analysis.

Evaluation of a Positive Psychology Group Intervention in Nature for Young Cancer Survivors to Promote Well-Being and Post-Cancer Identity Development.

Health-Related Quality of Life Issues Experienced by Thoracic and Breast Sarcoma Patients: A Rare and Understudied Group.

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.

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