Anne‐Sophie Darlington
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Author Swipe
View article: Development of a Health-Related Quality of Life Tool for Adolescents and Young Adults With Cancer
Development of a Health-Related Quality of Life Tool for Adolescents and Young Adults With Cancer Open
Importance A diagnosis of cancer during adolescence and young adulthood disrupts key developmental stages, affecting multiple domains of health-related quality of life (HRQOL). To provide a comprehensive assessment of the HRQOL issues of a…
View article: Navigating Romantic Relationships and Sexual Intimacy: Challenges and Opportunities for Adolescents and Young Adults With Cancer ‐ A Literature Review of Qualitative Studies
Navigating Romantic Relationships and Sexual Intimacy: Challenges and Opportunities for Adolescents and Young Adults With Cancer ‐ A Literature Review of Qualitative Studies Open
Objective This review explores the impact of cancer on adolescents' and young adults' (AYAs) romantic and sexual relationships, examining both challenges and opportunities. Methods Qualitative studies on AYAs with cancer and/or their partn…
View article: SUPPORT MY WAY: Supporting Young People After Treatment for Cancer: What Is Needed, When This Is Needed and How This Can Be Best Delivered
SUPPORT MY WAY: Supporting Young People After Treatment for Cancer: What Is Needed, When This Is Needed and How This Can Be Best Delivered Open
As survival rates for teenagers and young adults (TYAs) with cancer exceed 80%, they are living longer post treatment, yet often experience prolonged health and quality of life concerns. Many TYAs also experience unmet support needs. This …
View article: Knowledge representation of a multi-centre adolescent and young adult (AYA) cancer infrastructure; development of the STRONG AYA Knowledge Graph
Knowledge representation of a multi-centre adolescent and young adult (AYA) cancer infrastructure; development of the STRONG AYA Knowledge Graph Open
Purpose Rare diseases are difficult to fully capture, and regularly call for large, geographically dispersed initiatives. Such initiatives are often met with data harmonisation challenges. These challenges render data incompatible and impe…
View article: Support My Way: Supporting Young People After Treatment for Cancer: What Is Needed, When This Is Needed and How This Can Be Best Delivered
Support My Way: Supporting Young People After Treatment for Cancer: What Is Needed, When This Is Needed and How This Can Be Best Delivered Open
As survival rates for teenagers and young adults (TYAs) with cancer exceed 80%, they are living longer post treatment, yet often experience prolonged health and quality of life concerns. Many TYAs also experience unmet support needs. This …
View article: Improving our understanding of the quality of life of patients with metastatic or recurrent/persistent anal cancer: a systematic review
Improving our understanding of the quality of life of patients with metastatic or recurrent/persistent anal cancer: a systematic review Open
Purpose Chemoradiation (CRT) is used to treat anal carcinomas which, for most patients with loco-regional disease, results in a cure but is associated with acute and chronic complications impairing quality of life (QoL). Patients with meta…
View article: The approach and application of analysing inductive and deductive datasets: a worked example using reflexive thematic analysis
The approach and application of analysing inductive and deductive datasets: a worked example using reflexive thematic analysis Open
Braun and Clarke’s reflexive thematic analysis (reflexive TA) has gained wide attraction since its conception in 2006. Reflexive TA is methodologically flexible with researchers making decisions, which support their philosophical positioni…
View article: Supporting families after the unexpected death of a child
Supporting families after the unexpected death of a child Open
Sudden Unexpected Death in Children (SUDIC), encompassing causes such as accidents, suicides, and unexplained medical conditions, constitutes one-third of all child deaths in higher-income countries. These events are deeply traumatic for f…
View article: Surgeons and neonatologists views about surgical decision-making in necrotising enterocolitis
Surgeons and neonatologists views about surgical decision-making in necrotising enterocolitis Open
Objective To understand why surgical decision-making in necrotising enterocolitis (NEC) is challenging and to explore what is required to optimise this. Design Three semi-structured in-person focus groups exploring surgical decision-making…
View article: Assessing patient-reported outcomes (PROs) in paediatric oncology research: Which PRO would a pro pick, if a pro was picking PROs?
Assessing patient-reported outcomes (PROs) in paediatric oncology research: Which PRO would a pro pick, if a pro was picking PROs? Open
Patient-reported outcomes (PROs) enable the report of experiences that are only known to the patient, such as how an individual’s symptoms, functioning, and quality of life are impacted by a health condition or treatment. The choice of PRO…
View article: 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 Open
The development of the first European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group (QLG) health-related quality of life (HRQoL) questionnaires contributed to the systematic uptake of HRQoL as an endpoint …
View article: Feeding behaviour in children and young people with a ventricular assist device (VAD): a scoping review
Feeding behaviour in children and young people with a ventricular assist device (VAD): a scoping review Open
Introduction Advancements in medical technology have revolutionised the management of end-stage heart failure in children with ventricular assist devices (VADs), improving survival but introducing a range of challenges including complex is…
View article: Core Patient-Centered Outcomes for Adolescents and Young Adults with Cancer: A Comprehensive Review of the Literature from the STRONG-AYA Project
Core Patient-Centered Outcomes for Adolescents and Young Adults with Cancer: A Comprehensive Review of the Literature from the STRONG-AYA Project Open
Background: In adolescents and young adults (AYAs) with cancer, the importance of patient-centered research outcomes is increasingly acknowledged and there is a need for consensus on the most relevant outcomes. This review provides a compr…
View article: “Meet us where we’re at:” Towards engaging and inclusive research with young adults with a lived experience of cancer
“Meet us where we’re at:” Towards engaging and inclusive research with young adults with a lived experience of cancer Open
Background/Objective: Meaningful engagement with young adults (YAs) with a lived experience of cancer is important for conducting impactful research on issues that matter to them, and ensures their voices are central to shaping cancer rese…
View article: “They had to watch”: How parents perceive the suffering of siblings of children with cancer
“They had to watch”: How parents perceive the suffering of siblings of children with cancer Open
Aims While many siblings of children with cancer demonstrate resilient outcomes, they also face their own unique experiences that increase their risk for acute and long-term psychosocial difficulties. It is accepted that children undergoin…
View article: Quality of Life Priorities of Childhood Acute Lymphoblastic Leukemia Survivors Enrolled in EORTC Studies, and a Comparison of Instruments
Quality of Life Priorities of Childhood Acute Lymphoblastic Leukemia Survivors Enrolled in EORTC Studies, and a Comparison of Instruments Open
Purpose Survivors of childhood cancer can suffer from long‐term sequelae or decline in quality of life (QoL), for which careful and standardized selection of outcome measures become more important. This study aims to assess different QoL‐r…
View article: Alignment of Palliative Care Service Structure and Standards of Care for Adolescents and Young Adults with Cancer: An International Survey of Clinical Practice
Alignment of Palliative Care Service Structure and Standards of Care for Adolescents and Young Adults with Cancer: An International Survey of Clinical Practice Open
Background: Access to timely, age-appropriate palliative care services and end-of-life communication are two standards of care for adolescents and young adults (AYAs) living with cancer where cure is uncertain or unlikely. Health professio…
View article: Exploring parent treatment decision-making in relapsed and refractory neuroblastoma: A qualitative study
Exploring parent treatment decision-making in relapsed and refractory neuroblastoma: A qualitative study Open
Parents often become involved in making treatment decisions for their child with cancer when there is no standard treatment protocol, typically seen in poor-prognosis cancers. Advances in scientific medicine has led to more treatment optio…
View article: 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
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 Open
Background Many studies highlight poor health‐related quality of life (HRQoL) in children treated for brain tumours and their parents. However, little is known about the extent to which their informational, healthcare and communication nee…
View article: The Development of a Communication Tool to Aid Parent-Centered Communication between Parents and Healthcare Professionals: A Quality Improvement Project
The Development of a Communication Tool to Aid Parent-Centered Communication between Parents and Healthcare Professionals: A Quality Improvement Project Open
Good communication is central to good healthcare. As a result of poor communication between parents and healthcare professionals (HCPs) in clinical settings, this study aimed to address this problem by developing a communication tool to em…
View article: Patient Reported Outcomes and Measures in Children with Rhabdomyosarcoma
Patient Reported Outcomes and Measures in Children with Rhabdomyosarcoma Open
In addition to optimising survival of children with rhabdomyosarcoma (RMS), more attention is now focused on improving their quality of life (QOL) and reducing symptoms during treatment, palliative care or into long-term survivorship. QOL …