Area of research
Pediatrics, Perinatology and Child Health · Oncology
Research interest
Research interests include Childhood Cancer Survivors' Quality of Life, Cancer survivorship and care, Family Support in Illness, and Palliative Care and End-of-Life Issues.
Assessing the Validity and Acceptability of an Adult Quality of Life Questionnaire, the EORTC QLQ-C30, for Adolescents With Cancer.
Knowledge Representation of a Multicenter Adolescent and Young Adult Cancer Infrastructure: Development of the STRONG AYA Knowledge Graph.
Flexibility in patient-reported outcome and health-related quality of life measurement: The EORTC Quality of Life Group measurement strategy
Flexibility in patient-reported outcome and health-related quality of life measurement: The EORTC Quality of Life Group measurement strategy
Surgeons and neonatologists views about surgical decision-making in necrotising enterocolitis.
Core Patient-Centered Outcomes for Adolescents and Young Adults with Cancer: A Comprehensive Review of the Literature from the STRONG-AYA Project.
Mapping and comparing the quality of life outcomes in childhood and adolescent and young adult cancer survivors: an umbrella review and future directions.
Adolescent and young adult (AYA) patient involvement and engagement in European health care and research projects: expanding the scope of patient advocacy.
Improving our understanding of the quality of life of patients with metastatic or recurrent/persistent anal cancer: a systematic review.
Navigating Romantic Relationships and Sexual Intimacy: Challenges and Opportunities for Adolescents and Young Adults With Cancer - A Literature Review of Qualitative Studies.
Suffering is a Useful Concept When We Understand the Sufferer.
Supporting parent treatment decision-making in relapsed and refractory neuroblastoma: co-design of a web-based intervention.
"Meet us where we're at:" Towards engaging and inclusive research with young adults with a lived experience of cancer.
Development of a Health-Related Quality of Life Tool for Adolescents and Young Adults With Cancer.
Supporting families after the unexpected death of a child.
SUPPORT MY WAY: Supporting Young People After Treatment for Cancer: What Is Needed, When This Is Needed and How This Can Be Best Delivered.
Ethnicity and childhood cancer survival.
Quality of Life Priorities of Childhood Acute Lymphoblastic Leukemia Survivors Enrolled in EORTC Studies, and a Comparison of Instruments.
Knowledge representation of a multi-centre adolescent and young adult (AYA) cancer infrastructure; development of the STRONG AYA Knowledge Graph
Integration of patient and public involvement in a doctoral research study using the research cycle.
Protocol for the development of a Core Outcome Set (COS) for Adolescents and Young Adults (AYAs) with cancer.
Alignment of Palliative Care Service Structure and Standards of Care for Adolescents and Young Adults with Cancer: An International Survey of Clinical Practice.
Experiences of families post treatment for childhood brain tumours during medical clinic consultations regarding health-related quality of life, unmet needs and communication barriers: A qualitative exploration.
Revisiting the use of the EORTC QLQ-STO22 to assess health-related quality of life of patients with gastric cancer: incorporating updated treatment options and cross-cultural perspectives.
Recommendations on the use of item libraries for patient-reported outcome measurement in oncology trials: findings from an international, multidisciplinary working group.
Phase III study of the European Organisation for Research and Treatment of Cancer Quality of Life cancer survivorship core questionnaire.
A critical evaluation of the content validity of patient-reported outcome measures assessing health-related quality of life in children with cancer: a systematic review.
Updating our understanding of health-related quality of life issues in children with cancer: a systematic review of patient-reported outcome measures and qualitative studies.
International Validation of the EORTC QLQ-ANL27, a Field Study to Test the Anal Cancer-Specific Health-Related Quality-of-Life Questionnaire.
The Development of a Communication Tool to Aid Parent-Centered Communication between Parents and Healthcare Professionals: A Quality Improvement Project.