Karin Piil
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View article: Shared Decision-Making in Curative Uro-Oncology: A Systematic Review
Shared Decision-Making in Curative Uro-Oncology: A Systematic Review Open
Oncology nurses are central to SDM by clarifying patient preferences, addressing side effects, and supporting decision aid use. Their sustained patient relationships foster trust and communication, while nurse-led roles-such as preference …
Exploration of the relevance and comprehensibility of the European Organization for the Research and Treatment of Cancer Sexual Health Questionnaire among Danish young adults aged 18–39: a national cross-sectional study Open
Background The EORTC Sexual Health Questionnaire (EORTC QLQ-SH22) assesses sexual health-related quality of life in adult cancer patients. However, it may not fully address age-dependent issues in young adults aged 18–39 at diagnosis. This…
View article: NCOG-37. Outcomes from online education focused on novel targeted therapies for IDH-mutant gliomas
NCOG-37. Outcomes from online education focused on novel targeted therapies for IDH-mutant gliomas Open
BACKGROUND The identification of IDH mutations has transformed glioma classification and opened new therapeutic avenues in neuro-oncology. This study evaluated the impact of an online continuing medical education (CME) activity on clinicia…
P16.04.B THE ROLE OF CHAIRPERSONS IN QUALITY AND INCLUSIVITY OF SCIENTIFIC DISCUSSIONS: AN EANO SURVEY Open
BACKGROUND Scientific conferences are vital platforms for sharing research, fostering collaboration, and driving scientific progress. While formal presentations are central to these events, interactive elements, such as expert panels and a…
OS07.5.A END-OF-LIFE CARE EXPERIENCES AND LONG-TERM OUTCOMES OF BEREAVED NEURO-ONCOLOGY CAREGIVERS: A CROSS-SECTIONAL SURVEY Open
BACKGROUND The last three months of life (end-of-life EoL phase) is profoundly challenging for patients with brain tumours (PBTs) and their family caregivers. Post-bereavement outcomes are largely unknown. To better understand long-term ou…
View article: EP15.05 AN EVIDENCE-BASED AND PERSON-CENTERED CARE PLAN FOR PATIENTS WITH PRIMARY MALIGNANT BRAIN TUMOR- A PHD PROJECT PROTOCOL
EP15.05 AN EVIDENCE-BASED AND PERSON-CENTERED CARE PLAN FOR PATIENTS WITH PRIMARY MALIGNANT BRAIN TUMOR- A PHD PROJECT PROTOCOL Open
BACKGROUND Patients with high-grade gliomas (HGG) experience significant physical, psychological, and cognitive symptoms, which can impact their ability to communicate and reduce their quality of life. Additionally, informal caregivers fac…
P15.01.A END-OF-LIFE CARE EXPERIENCES AND LONG-TERM OUTCOMES OF BEREAVED NEURO-ONCOLOGY CAREGIVERS: “IT’S A CLUB NOBODY WANTED TO JOIN, BUT WE’RE THERE” Open
BACKGROUND Even years post-bereavement, neuro-oncology caregivers are known to suffer serious and long-lasting adverse outcomes. To identify opportunities to enhance support, we investigated caregiver experiences during the patient’s end-o…
Exploring family health, support, self-efficacy and quality of life during the cancer trajectory: a protocol for a longitudinal mixed methods multi-centre cohort study Open
Introduction A cancer diagnosis not only profoundly impacts individuals but also the very core of their families, reshaping their lives in many ways. However, there is a lack of focus on the well-being and health of the entire family acros…
View article: Navigating the Healthcare System With Chronic Illness: A Qualitative Study of Caregiver Experiences
Navigating the Healthcare System With Chronic Illness: A Qualitative Study of Caregiver Experiences Open
Background Chronic illness management often requires ongoing self‐care by patients, along with complex interactions with healthcare professionals. Informal caregivers play a crucial role in supporting individuals with chronic conditions; h…
View article: A supportive group intervention for caregivers to patients diagnosed with a glioblastoma – a protocol for the SUGRI study (Preprint)
A supportive group intervention for caregivers to patients diagnosed with a glioblastoma – a protocol for the SUGRI study (Preprint) Open
BACKGROUND Caregivers to a person diagnosed with a glioblastoma often face significant responsibilities, balancing the demands of care with the complexities of the disease- and treatment trajectory, while also coping with concerns and unce…
View article: Understanding symptoms in the lives of adult patients with acute or chronic illness: a phenomenological study of patient experiences
Understanding symptoms in the lives of adult patients with acute or chronic illness: a phenomenological study of patient experiences Open
Insights emphasize the importance of addressing both the biological and existential dimensions of symptoms. Face-to-face clinical encounters offer a shared opportunity to create reflective spacesValidating coping strategies and supporting …
View article: Defining the Symptoms of Personality and Behaviour Changes in Brain Tumour Patients and Their Impact on Caregivers
Defining the Symptoms of Personality and Behaviour Changes in Brain Tumour Patients and Their Impact on Caregivers Open
Purpose This study aimed to: i) identify how carers and healthcare professionals define and describe brain tumour related personality and behaviour changes in adults; and, ii) explore the impact of these changes on carers. Methods We condu…
View article: Group-based interventions for caregivers to patients diagnosed with a brain tumor: A systematic review
Group-based interventions for caregivers to patients diagnosed with a brain tumor: A systematic review Open
Background Individuals diagnosed with a primary brain tumor often depend on practical assistance and emotional support from family and social network. Supportive care interventions are therefore of importance to informal caregivers. The ai…
Intercultural Dilemmas in Cancer Care: Perspectives From Family Caregivers of Immigrant Patients Open
Background Immigrants with language barriers face significant challenges in communication with the healthcare system and often rely on family caregivers' interpretation. These challenges are intensified in critical treatment trajectories s…
View article: Unveiling the Unspoken: Exploring Taboo Thoughts and Difficult Experiences Among Carers of People With Brain Cancer
Unveiling the Unspoken: Exploring Taboo Thoughts and Difficult Experiences Among Carers of People With Brain Cancer Open
Objective The primary objective of this research was to explore the rarely discussed, often unspoken, taboo thoughts and difficult emotions experienced by carers who support individuals with brain tumour related personality and behaviour c…
End-of-life care experiences and long-term outcomes of bereaved neuro-oncology caregivers: A cross-sectional survey Open
Background: The last three months of life (end-of-life phase) are profoundly challenging for patients with brain tumours and their family caregivers. Post-bereavement outcomes are largely unknown. Aim: To better understand long-term outcom…
Exploring motivations of peer supporters for caregivers of patients with hematological malignancies—a qualitative study Open
Purpose Social support interventions, particularly peer support from former family caregivers, offer unique assistance to caregivers of newly diagnosed patients. Since voluntary peer support is driven by personal choice, understanding the …
Changing an exercise behaviour for physically inactive patients with breast cancer during chemotherapy- the critical role of nurse support: An implementation study Open
Nurse-led conversations and pedometers have high impact on change health behaviors in physically inactive people undergoing oncological treatment for breast cancer. The intervention can be easily implemented as it required few resources an…
Healthcare Professionals’ Perspectives on ePROMs in Surgical Breast Cancer Follow‐Up: A Mixed‐Methods Study Open
Background: The growing number of breast cancer survivors underscores the need for tailored follow‐up care, particularly focussing on person‐centred outcomes in surgical follow‐ups. Electronic patient‐reported outcome measures (ePROMs) hav…
Demographic and clinical impact on preoperative BREAST-Q ePROM completion and baseline outcomes in women undergoing breast cancer surgery: a quantitative descriptive study at a Danish university hospital Open
Objectives This study aimed to investigate patients’ use of electronic Patient-Reported Outcome Measures (ePROMs) and understand the demographic and clinical factors that may be correlated with patient responses to the BREAST-Q at the preo…
Implementation and Evaluation of Peer Ambassador Support to Patients Newly Diagnosed With Hematological Cancer and Their Caregivers Open
Aims and Objectives: To provide a comprehensive report on the development and implementation of peer ambassador support to patients newly diagnosed with hematological malignant disease and their caregivers within a clinical setting. Method…
View article: P22.14.A REPORTING STANDARDS IN RANDOMIZED CONTROLLED TRIALS WITH FAMILY CAREGIVERS IN NEURO-ONCOLOGY: A SYSTEMATIC REVIEW FROM THE RANO-CARES WORKING GROUP
P22.14.A REPORTING STANDARDS IN RANDOMIZED CONTROLLED TRIALS WITH FAMILY CAREGIVERS IN NEURO-ONCOLOGY: A SYSTEMATIC REVIEW FROM THE RANO-CARES WORKING GROUP Open
BACKGROUND Family caregivers in neuro-oncology consistently report high levels of unmet support needs, yet intervention trials and effective support options are scarce. To raise the standard of caregiver-related research reporting in neuro…
OS04.6.A ONE STEP CLOSER TO THE END OF LIFE - A QUALITATIVE STUDY ABOUT THE EXPERIENCES OF PATIENTS AND THEIR FAMILIES IN RELATION TO THE RECURRENCE OF A HIGH-GRADE GLIOMA Open
BACKGROUND High-grade gliomas (HGG) are the most aggressive and infiltrative sub-type of primary brain tumors. Despite intensive treatment, the average survival time from diagnosis is less than two years, and all patients experience recurr…
P22.17.B THE NEURO-ONCOLOGICAL CAREGIVER ROLES AND RESPONSIBILITIES - A QUANTITATIVE SURVEY Open
BACKGROUND In Denmark, cancer treatment is increasingly offered on an outpatient basis. This adds a responsibility on the caregivers, who often handle treatment agreements, provide 24/7 care, and offer practical support within the home env…