Publications by authors named "Karin Piil"

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 motivations for participating and how motivation evolves over time is essential. This study explores the motivations for becoming a peer support provider for family caregivers of patients with hematological malignancies and how motivation changes over time.

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Background: Family caregivers in neuro-oncology (eg, spouse, family member, friend to a patient) have high unmet support needs, yet intervention trials and effective support options are scarce. The Response Assessment in Neuro-Oncology (RANO)-Cares working group investigated the methodological quality of neuro-oncology caregiver outcomes reporting in randomized controlled trials (RCTs).

Methods: A systematic review was performed to evaluate to what extent RCTs assessing outcomes of caregivers of adult primary brain tumor patients adhere to minimum reporting standards.

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Background: Depressive symptoms are common in patients with diffuse glioma, potentially reducing their quality of life. Understanding baseline factors associated with the development of depressive symptoms is important for psychoeducation and early intervention. This study investigates the associations of baseline patient- and tumor-related characteristics and depressive symptoms 1 year after surgery.

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Purpose: This implementation study investigates the feasibility of a nurse-led pedometer intervention and motivational counselling for physically inactive people with breast cancer undergoing chemotherapy in a real-world oncology outpatient setting. It also evaluates the effectiveness of supportive conversations with specialized nurses in terms of behavior change.

Methods: Nurses were trained through an 8-h educational program to deliver the intervention.

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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 preoperative stage of breast cancer. The BREAST-Q is a PROM in questionnaire format, developed and validated to assess satisfaction and quality of life for breast surgery patients.The hypothesis tested is that considering disparities in geography, age and education among responders is essential for capturing a diverse patient population in future Patent-Reported Outcome Measures initiatives, examining how these characteristics are associated with Patent-Reported Outcome Measures utilisation and outcomes.

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Purpose: This study aimed to investigate patients' experiences with electronic Patient-Reported Outcome Measures (ePROMs) during follow-up consultations with registered nurses and surgeons in breast cancer care.

Methods: A qualitative approach was employed, using focused ethnography with participant observations during patient consultations at a Plastic and Breast Surgery outpatient clinic, followed by individual interviews with the patients. Data were analysed using reflexive thematic analysis by Braun and Clarke.

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Background: Neuro-oncology patients and caregivers should have equitable access to rehabilitation, supportive-, and palliative care. To investigate existing issues and potential solutions, we surveyed neuro-oncology professionals to explore current barriers and facilitators to screening patients' needs and referral to services.

Methods: Members of the European Association of Neuro-Oncology and the European Organisation for Research and Treatment of Cancer Brain Tumor Group (EORTC-BTG) were invited to complete a 39-item online questionnaire covering the availability of services, screening, and referral practice.

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Family-centered intervention can help families facing illness-related issues. We investigated the feasibility of Family and Network Conversations (FNCs) in high-grade glioma patients and their families. Quasi-experimental feasibility study with longitudinal mixed-methods design.

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Objective: To investigate the quality of life (QoL) and the impact of caregiving in family caregivers of hematological cancer patients and its association with patient symptom burden.

Methods: A cross-sectional study including Danish patients (n = 375) and caregivers (n = 140). Caregivers completed scales for anxiety and depression using the Hospital Anxiety and Depression Scale, sleep quality using the Pittsburgh Sleep Quality Index, health related QoL using the 12-item Short-Form Health Survey, and caregiver roles using the Caregiver Roles and Responsibilities Scale.

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Article Synopsis
  • * The study aims to create and evaluate an electronic symptom management tool named Bone@BC for these patients to help track symptoms and improve their quality of life during maintenance therapy with aromatase inhibitors.
  • * The research is structured in four stages: conducting a literature review on aromatase inhibitor symptoms, compiling a list of these symptoms, developing the app with a patient-friendly interface, and testing its feasibility with 45 patients over 12 weeks through surveys and interviews.
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Background: The proportion of women among healthcare and biomedical research professionals in neuro-oncology is growing. With changes in cultural expectations and work-life balance considerations, more men aspire to nonfull-time jobs, yet, leadership positions remain dominated by men.

Methods: The European Association of Neuro-Oncology (EANO) disparity committee carried out a digital survey to explore gender balance and actions suitable to promote gender equality.

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Objective: To synthesise qualitative literature on (1) the perceptions of patients with cancer of participating in an exercise intervention while undergoing chemotherapy and (2) to inform and guide professionals in oncology and haematology practice.

Design: A qualitative meta-synthesis based on Noblit and Hare's seven-step meta-ethnography.

Data Sources: Six electronic databases: Cochrane Central Register of Controlled Trials (CENTRAL), CINAHL, EMBASE, PubMed, SCI-Expanded-SSCI and Scopus (final search June 2022) were used to identify qualitative literature containing individual or focus group interviews.

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Background: Patient and Public Involvement (PPI) in health research is gaining increased attention and acceptance worldwide. Reliable measurements are crucial to accurately assess, monitor, and evaluate patient involvement efforts in research. The Patient Engagement in Research Scale (PEIRS-22) measures meaningful patient and family caregiver engagement in research.

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Background: Over the past decades, there has been a growing international interest in user involvement in healthcare research. However, evidence on the management and impact of patient and public involvement in Nordic healthcare research remains limited.

Objective: The aim was to explore and delineate the current state, practice, and impact of patient and public involvement in healthcare research across different areas of healthcare and patient populations in the Nordic countries.

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Purpose: The objective of this systematic review was to establish an overview of aromatase inhibitor-related symptoms reported by postmenopausal women with nonmetastatic, estrogen receptor-positive breast cancer.

Data Sources: Eight databases (PubMed, Cochrane, Cumulative Index to Nursing and Allied Health Literature [CINAHL], Ovid EMBASE, Ovid MEDLINE, PsycINFO, Scopus, and Web of Science) were searched for trials published between January 2004 and November 2021. Inclusion criteria were studies exploring patient-reported aromatase inhibitor-related symptoms in postmenopausal women with nonmetastatic estrogen receptor-positive breast cancer.

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Objectives: To investigate symptom patterns in young adults with cancer using a smartphone-based app. The authors sought to explore symptom frequency and severity, cluster patients based on their symptom severity, investigate the co-occurrence of severe symptoms, and explore the relationship between symptoms and activities.

Data Sources: Data were collected, using a mobile app, from 161 young adults with cancer (mean age 25.

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Background: The purpose of this case study is to describe how a vulnerable group of patients can be included in research. The activities, challenges, lessons learned, and reflections on the importance of patient involvement in research for 5 years (2016-2021) at the adolescent and young adult (AYA) cancer support facility, Kræftværket, are reported.

Main Body: A patient panel at Kræftværket, the Youth Panel has multiple aims, one of which is the ability to perform patient involvement in research, with the goal of achieving research of high quality.

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Background: Women with endometrial or ovarian cancer experience a variety of symptoms during chemotherapy. Patient-Reported outcomes (PROs) can provide insight into the symptoms they experience. A PRO tool tailored to this patient population can help accurately monitor adverse events and manage symptoms.

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Objective: The study aims to develop medical infographics that have a potential to raise symptom awareness and promote symptom communication between patients diagnosed with cancer and healthcare professionals.

Methods: This study comprised four phases: 1) development of medical infographics, 2) user testing with healthcare professionals and patients, 3) selection of specific medical infographics, and 4) interviews on these specific medical infographics with patients using the think-aloud method.

Results: Design students created 22 medical infographics conveying information about six symptoms and concerns.

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Introduction: The Self-Efficacy for Managing Chronic Disease 6-item Scale is a widely used questionnaire instrument for measuring self-efficacy. Since self-efficacy has increasingly been recognised as an essential prerequisite for effective self-management of chronic diseases, valid and reliable measures are needed to do evaluations in research and clinical practice. This study aimed to translate and perform linguistic validation of the questionnaire for use in a Danish population and context.

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Objective: Subfrontal meningiomas grow insidiously in areas with high cerebral compliance and a relative scarcity of eloquent function. Symptoms develop progressively, are nonspecific, and include anosmia, changes in personality and cognition, depressive symptoms, headaches, visual disturbances, and seizures. Patients with subfrontal meningiomas carry the highest risk of developing psychological symptoms, which makes patient-reported outcome in terms of long-term health-related quality of life (HRQOL), anxiety, and depression of particular importance.

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