Publications

ESMO real world data and digital oncology

From registration to insight: how STRONG AYA transforms registry data to enhance decision-support tools for adolescent and young adult oncology.

01-12-2026

Endocrine

Score interpretation thresholds for the European Organisation for Research and Treatment of Cancer thyroid cancer quality of life questionnaire (EORTC QLQ-THY34). An international prospective study.

29-10-2026

European journal of cancer (Oxford, England : 1990)

A health-related quality of life measurement strategy for solid rare cancers: Primary findings from the EORTC Quality of Life Group (QLG) QoL Rare Cancer Study.

14-10-2026

Lancet (London, England)

Distinguishing AYA oncology from early-onset cancer.

03-10-2026

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

Digital symptom monitoring in cancer care: an exploratory evaluation of low uptake and engagement.

02-10-2026

ESMO open

Advancing cancer care for adolescents and young adults: the role of the European Network of Expertise.

01-10-2026

Journal of cancer survivorship : research and practice

Associations of adherence to the World Cancer Research Fund lifestyle recommendations with health-related quality of life and fatigue in Adolescent and Young Adult (AYA) cancer survivors: results from the SURVAYA study.

01-10-2026

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

A conceptual model of cancer care and lived experiences in adolescents and young adults with cancer: results from the multi-national European STRONG AYA project.

25-09-2026

BMJ open

SCOPES-II: short course of preoperative radiotherapy in head and neck, trunk and extremity soft tissue sarcomas - study protocol for a second randomised phase II clinical trial.

23-09-2026

European journal of cancer (Oxford, England : 1990)

The European Organisation for Research and Treatment of Cancer Quality of Life Group: Past achievements and future priorities in patient-reported outcomes in oncology.

09-09-2026

Annals of surgical oncology

ASO Author Reflections: Beyond Time to Diagnosis: The Lasting Impact of Diagnostic Experience in GIST.

01-08-2026

Neuro-oncology practice

Symptom burden in young adult brain tumor survivors: Key intervention targets based on patient-reported outcome network analyses.

01-08-2026

Annals of surgical oncology

ASO Visual Abstract: Patient and Tumor Factors Influencing Diagnostic Trajectories in Gastrointestinal Stromal Tumor Patients and Their Impact on Health-Related Quality of Life: A Dutch Multicenter Study.

01-08-2026

Journal of cancer survivorship : research and practice

Health-related quality of life of long-term adolescent and young adult (AYA) cancer survivors compared to a matched normative population: results of the SURVAYA study.

01-08-2026

Annals of surgical oncology

Patient and Tumor Factors Influencing Diagnostic Trajectories in Gastrointestinal Stromal Tumor Patients and Their Impact on Health-Related Quality of Life: A Dutch Multicenter Study.

01-08-2026

Colorectal disease : the official journal of the Association of Coloproctology of Great Britain and Ireland

Quality of life assessment for colorectal cancer follow-up: A latent profile analysis of EORTC measures.

01-08-2026

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

Self-reported peripheral neuropathic symptoms in long-term adolescent and young adult (AYA) cancer survivors: results of the SURVAYA study.

02-07-2026

Radiography (London, England : 1995)

Independent patient access to imaging digital health records: Oncology patients' and healthcare professionals' views and preferences.

01-07-2026

Annals of surgical oncology

Understanding Physical Functioning in Patients with Sarcoma After Amputation: Using an International Classification of Functioning, Disability and Health (ICF) Approach.

01-07-2026

Thyroid : official journal of the American Thyroid Association

Prospective Predictors of Poor Emotional Functioning in Patients with Differentiated Thyroid Carcinoma.

01-07-2026

Annals of surgical oncology

ASO Author Reflections: Physical Functioning in Patients with Sarcoma After Amputation: Are Current Questionnaires Fit for Purpose?

01-07-2026

Journal of medical genetics

Perspectives of adolescents and young adults with advanced cancer on complete genomic analysis in standard oncology care.

25-06-2026

Current oncology (Toronto, Ont.)

Coping with an Uncertain or Poor Cancer Prognosis as an Adolescent or Young Adult: A Cross-Sectional Cluster Analysis.

23-06-2026

European journal of cancer (Oxford, England : 1990)

Prognostic value for overall survival of the EORTC QLQ-C30 Summary Score: An analysis of 5 closed EORTC trials.

18-06-2026

Current oncology (Toronto, Ont.)

Quality of Life and Healthcare Experiences of Patients with Anal Cancer: A Mixed-Methods Study.

05-05-2026

BMJ open

Pre-diagnostic route reported by patients with sarcoma from the Netherlands, the UK, Australia and New Zealand: early detection challenges for general practitioners - an international observational cohort study.

04-05-2026

Cancer imaging : the official publication of the International Cancer Imaging Society

Improving patient understanding of oncology imaging: radiologist and patient evaluation of summarised versus full-length AI-simplified reports from a tertiary cancer centre.

13-04-2026

Journal of cancer survivorship : research and practice

Identifying the informational needs and sources of support of Adolescent and Young Adult (AYA) cancer survivors to inform the development of a digital platform.

01-04-2026

Journal of cancer survivorship : research and practice

Hospitalization for medical conditions in adolescent and young adult cancer survivors: a nationwide cohort study using the Netherlands Cancer Registry.

07-03-2026

Clinical breast cancer

Long-Term Health Issues of Adolescent and Young Adult Breast Cancer Survivors.

01-03-2026

Health and quality of life outcomes

Incorporating patients' input in the development and validation of patient-reported outcome measures in oncology: a comprehensive scoping review.

18-02-2026

JAMA otolaryngology-- head & neck surgery

Patient-Reported Outcomes Across Treatment Strategies in Papillary Thyroid Microcarcinoma: A Meta-Analysis.

01-02-2026

Journal of cancer survivorship : research and practice

Prevalence and determinants of sleep problems in cancer survivors compared to a normative population: a PROFILES registry study.

01-02-2026

Cancers

Understanding the Experiences of Adolescents and Young Adults Diagnosed with Cancer During Higher Education-An Exploratory Interview Study.

20-01-2026

JCO clinical cancer informatics

Knowledge Representation of a Multicenter Adolescent and Young Adult Cancer Infrastructure: Development of the STRONG AYA Knowledge Graph.

01-01-2026

The Lancet. Oncology

Development of a core outcome set for adolescents and young adults with cancer.

01-01-2026

The British journal of surgery

Health-related quality of life of patients undergoing active surveillance versus standard surgery for oesophageal cancer (SANO trial).

24-12-2025

Journal of cancer survivorship : research and practice

Health-related conditions among long-term cancer survivors diagnosed in adolescence and young adulthood (AYA): results of the SURVAYA study.

01-12-2025

JAMA network open

Development of a Health-Related Quality of Life Tool for Adolescents and Young Adults With Cancer.

01-12-2025

Journal of cancer education : the official journal of the American Association for Cancer Education

The Role of Health Literacy in Perceived Information Provision, Satisfaction, and Health-related Quality of Life Among Rare and Common Cancer Patients: A Population-based Registry Study.

05-11-2025

EClinicalMedicine

Health-related quality of life in patients with advanced soft tissue sarcoma receiving first-line palliative chemotherapy (HOLISTIC): longitudinal results from a prospective, observational cohort study.

01-11-2025

Head & neck

Health-Related Quality of Life in Patients With a Head and Neck Sarcoma: A Mixed-Methods Study.

01-11-2025

Psycho-oncology

Health-Related Quality of Life in Adolescents and Young Adults With an Uncertain or Poor Cancer Prognosis: Quantitative Baseline Results of the CORD-AYA Study.

01-11-2025

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

Effect of a digital tool on breast cancer specific health-related quality of life and psychological distress: secondary results from the ADAPT study.

08-10-2025

Journal of cancer survivorship : research and practice

'There is still a part of me that would love to be the old me again', how do adolescents and young adults (AYA) experience cancer-related bodily changes: a phenomenological interview study.

01-10-2025

International journal of cancer

Socioeconomic impact among and socioeconomic support services for adolescents and young adults with cancer: A European perspective.

01-10-2025

The Lancet regional health. Europe

5-Year conditional relative survival of adolescents and young adults with solid malignancies in the Netherlands: a population-based cohort study.

01-10-2025

Current oncology (Toronto, Ont.)

'What Really Goes on in My Cancer Bubble, They Cannot Understand': Social Functioning Among Adolescent and Young Adult (AYA) Cancer Patients.

09-09-2025

Psycho-oncology

Navigating Romantic Relationships and Sexual Intimacy: Challenges and Opportunities for Adolescents and Young Adults With Cancer - A Literature Review of Qualitative Studies.

01-09-2025

Hormones (Athens, Greece)

Quality of life in thyroid cancer survivors with and without permanent hypoparathyroidism.

01-09-2025

From registration to insight: how STRONG AYA transforms registry data to enhance decision-support tools for adolescent and young adult oncology.

Score interpretation thresholds for the European Organisation for Research and Treatment of Cancer thyroid cancer quality of life questionnaire (EORTC QLQ-THY34). An international prospective study.

A health-related quality of life measurement strategy for solid rare cancers: Primary findings from the EORTC Quality of Life Group (QLG) QoL Rare Cancer Study.

Distinguishing AYA oncology from early-onset cancer.

Digital symptom monitoring in cancer care: an exploratory evaluation of low uptake and engagement.

Advancing cancer care for adolescents and young adults: the role of the European Network of Expertise.

Associations of adherence to the World Cancer Research Fund lifestyle recommendations with health-related quality of life and fatigue in Adolescent and Young Adult (AYA) cancer survivors: results from the SURVAYA study.

A conceptual model of cancer care and lived experiences in adolescents and young adults with cancer: results from the multi-national European STRONG AYA project.

SCOPES-II: short course of preoperative radiotherapy in head and neck, trunk and extremity soft tissue sarcomas - study protocol for a second randomised phase II clinical trial.

The European Organisation for Research and Treatment of Cancer Quality of Life Group: Past achievements and future priorities in patient-reported outcomes in oncology.

ASO Author Reflections: Beyond Time to Diagnosis: The Lasting Impact of Diagnostic Experience in GIST.

Symptom burden in young adult brain tumor survivors: Key intervention targets based on patient-reported outcome network analyses.

ASO Visual Abstract: Patient and Tumor Factors Influencing Diagnostic Trajectories in Gastrointestinal Stromal Tumor Patients and Their Impact on Health-Related Quality of Life: A Dutch Multicenter Study.

Health-related quality of life of long-term adolescent and young adult (AYA) cancer survivors compared to a matched normative population: results of the SURVAYA study.

Patient and Tumor Factors Influencing Diagnostic Trajectories in Gastrointestinal Stromal Tumor Patients and Their Impact on Health-Related Quality of Life: A Dutch Multicenter Study.

Quality of life assessment for colorectal cancer follow-up: A latent profile analysis of EORTC measures.

Self-reported peripheral neuropathic symptoms in long-term adolescent and young adult (AYA) cancer survivors: results of the SURVAYA study.

Independent patient access to imaging digital health records: Oncology patients' and healthcare professionals' views and preferences.

Understanding Physical Functioning in Patients with Sarcoma After Amputation: Using an International Classification of Functioning, Disability and Health (ICF) Approach.

Prospective Predictors of Poor Emotional Functioning in Patients with Differentiated Thyroid Carcinoma.

ASO Author Reflections: Physical Functioning in Patients with Sarcoma After Amputation: Are Current Questionnaires Fit for Purpose?

Perspectives of adolescents and young adults with advanced cancer on complete genomic analysis in standard oncology care.

Coping with an Uncertain or Poor Cancer Prognosis as an Adolescent or Young Adult: A Cross-Sectional Cluster Analysis.

Prognostic value for overall survival of the EORTC QLQ-C30 Summary Score: An analysis of 5 closed EORTC trials.

Quality of Life and Healthcare Experiences of Patients with Anal Cancer: A Mixed-Methods Study.

Pre-diagnostic route reported by patients with sarcoma from the Netherlands, the UK, Australia and New Zealand: early detection challenges for general practitioners - an international observational cohort study.

Improving patient understanding of oncology imaging: radiologist and patient evaluation of summarised versus full-length AI-simplified reports from a tertiary cancer centre.

Identifying the informational needs and sources of support of Adolescent and Young Adult (AYA) cancer survivors to inform the development of a digital platform.

Hospitalization for medical conditions in adolescent and young adult cancer survivors: a nationwide cohort study using the Netherlands Cancer Registry.

Long-Term Health Issues of Adolescent and Young Adult Breast Cancer Survivors.

Incorporating patients' input in the development and validation of patient-reported outcome measures in oncology: a comprehensive scoping review.

Patient-Reported Outcomes Across Treatment Strategies in Papillary Thyroid Microcarcinoma: A Meta-Analysis.

Prevalence and determinants of sleep problems in cancer survivors compared to a normative population: a PROFILES registry study.

Understanding the Experiences of Adolescents and Young Adults Diagnosed with Cancer During Higher Education-An Exploratory Interview Study.

Knowledge Representation of a Multicenter Adolescent and Young Adult Cancer Infrastructure: Development of the STRONG AYA Knowledge Graph.

Development of a core outcome set for adolescents and young adults with cancer.

Health-related quality of life of patients undergoing active surveillance versus standard surgery for oesophageal cancer (SANO trial).

Health-related conditions among long-term cancer survivors diagnosed in adolescence and young adulthood (AYA): results of the SURVAYA study.

Development of a Health-Related Quality of Life Tool for Adolescents and Young Adults With Cancer.

The Role of Health Literacy in Perceived Information Provision, Satisfaction, and Health-related Quality of Life Among Rare and Common Cancer Patients: A Population-based Registry Study.

Health-related quality of life in patients with advanced soft tissue sarcoma receiving first-line palliative chemotherapy (HOLISTIC): longitudinal results from a prospective, observational cohort study.

Health-Related Quality of Life in Patients With a Head and Neck Sarcoma: A Mixed-Methods Study.

Health-Related Quality of Life in Adolescents and Young Adults With an Uncertain or Poor Cancer Prognosis: Quantitative Baseline Results of the CORD-AYA Study.

Effect of a digital tool on breast cancer specific health-related quality of life and psychological distress: secondary results from the ADAPT study.

'There is still a part of me that would love to be the old me again', how do adolescents and young adults (AYA) experience cancer-related bodily changes: a phenomenological interview study.

Socioeconomic impact among and socioeconomic support services for adolescents and young adults with cancer: A European perspective.

5-Year conditional relative survival of adolescents and young adults with solid malignancies in the Netherlands: a population-based cohort study.

'What Really Goes on in My Cancer Bubble, They Cannot Understand': Social Functioning Among Adolescent and Young Adult (AYA) Cancer Patients.

Navigating Romantic Relationships and Sexual Intimacy: Challenges and Opportunities for Adolescents and Young Adults With Cancer - A Literature Review of Qualitative Studies.

Quality of life in thyroid cancer survivors with and without permanent hypoparathyroidism.

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