Publications

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

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

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.

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.

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