Publications by authors named "Pernille Envold Bidstrup"

Background: Bereavement may affect the health of relatives, causing increased use of health care services and increased mortality shortly after the patient's death. However, the long-term consequences for those with a high level of grief symptoms remain largely unexplored. We aimed to investigate associations between grief symptom trajectories and four long-term health outcomes among relatives bereaved by natural death: contacts to general practice and mental health services, use of psychotropic prescription medication, and mortality, over a period of 3-10 years post-bereavement.

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Background: Home death may not be equally accessible for all children with incurable cancer. Furthermore, inadequate symptom management in the home setting represents a major concern. The aims of this study were to examine: (i) the associations between parents' sociodemographic characteristics, prognostic understanding and care goals, and their child's place of death; and (ii) the associations between the child's place of death, and the parents' experiences of their child's symptom burden, end-of-life, and death.

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Aim: To explore how classmate 'ambassadors' experienced and engaged in social interaction while visiting a hospitalised peer undergoing cancer treatment.

Design: A phenomenological-hermeneutic inspired exploratory study.

Methods: Using on-the-go semi-structured interviews and participant observations from January to December 2023 in Denmark, we included 27 school-aged ambassadors aged 6-18 years old; 18 participated in pre- and post-visit interviews, while all 27 took part in observations during 19 visits.

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Purpose: The MELACARE intervention aimed to evaluate a nurse-led follow-up program incorporating skin self-examination (SSE) education and psychosocial support to address fear of cancer recurrence (FCR) in early-stage melanoma survivors. This study assessed the MELACARE intervention's impact on FCR, psychological well-being, SSE performance, and healthcare usage compared to standard physician-led follow-up.

Methods: A two-group randomised controlled trial was conducted at Herlev and Gentofte Hospital, Denmark.

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Background And Purpose: Radical prostatectomy can cause erectile dysfunction; however, subsequent treatment with, e.g., phosphodiesterase-5 inhibitors may improve sexual function in the patients.

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Unlabelled: focused on patients living with metastatic cancer. We examined the feasibility of the SleepNow intervention combining cognitive behavioral therapy for insomnia (CBT-I) with physical exercise in men with metastatic prostate cancer (mPCa).

Patients/material And Methods: We conducted a feasibility randomized trial in patients under treatment for castration resistant mPCa with insomnia (Insomnia Severity Index [ISI] score ≥ 8).

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Introduction: To target psychological support to cancer patients most in need of support, screening for psychological distress has been advocated and, in some settings, also implemented. Still, no prior studies have examined the appropriate 'dosage' and whether screening for distress before cancer treatment may be sufficient or if further screenings during treatment are necessary. We examined the development in symptom trajectories for breast cancer patients with low distress before surgery and explored potential risk factors for developing burdensome symptoms at a later point in time.

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Aim/background: Patient-reported outcome measurement instruments are important tools in understanding a breast reconstruction's impact on the patients' quality of life. A psychometric validation is essential before applying a patient-reported outcome measurement instrument in clinical practice and research. The BREAST-Q is a specific, validated questionnaire for breast surgery outcomes that has been translated from English to Danish.

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Article Synopsis
  • Neurofibromatosis type 1 (NF1) is a genetic disorder that can cause various health issues, including cognitive impairments, which are not well-studied in adults; this research focused on evaluating these cognitive issues in adults with NF1.* -
  • The study involved 103 NF1 adults and 38 control participants, utilizing a range of neurocognitive tests and a self-report questionnaire to analyze various cognitive functions including intelligence, memory, attention, and executive functions.* -
  • Results revealed that adults with NF1 experience significant impairments, particularly in areas like intelligence and visual memory, while some cognitive functions remained intact, suggesting a specific pattern of cognitive deficits rather than a widespread impairment.*
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Background: Children with cancer or cancer-like disease risk treatment-related isolation, which can negatively impact their peer relationships and social competencies and exacerbate their loneliness. During the COVID-19 pandemic, increased online socialization became the new normal imposed by national isolation guidelines. To adhere to the treatment-related isolation guidelines, children with cancer were offered online classmate "ambassador" visits during hospitalization.

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Knowledge about effective coping strategies is important to support bereaved adolescents who have lost a parent. We used data on 104 bereaved adolescents (13-17 years) from the FALCON nationwide questionnaire study of parentally bereaved families. We examined associations between adolescents' control-oriented and escape-oriented coping strategies (KidCOPE scale) approximately two months after loss and grief symptoms (PG-13 scale) at six months follow-up.

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While grandparents are often a valuable resource in home-based pediatric end-of-life care, they may also experience psychological consequences when faced with their grandchild's illness and death. In this qualitative study, we performed semi-structured interviews with seven bereaved grandparents of four children with cancer who received home-based end-of-life care and died at home at age <18. Through qualitative content analysis we identified the overarching theme: "Navigating complex and unclear roles to support the family" and five themes: (1) Providing comfort and support; (2) Balancing and adapting involvement; (3) Worrying silently; (4) Managing difficult emotions; and (5) Calling for support and understanding.

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Background: Experiencing the illness and death of a child is a traumatic experience for the parents and the child's siblings. However, knowledge regarding effective grief interventions targeting the whole family is limited, including how to integrate age-appropriate support for siblings.

Aim: We aimed to synthesize the empirical literature regarding grief interventions that target the whole family before and/or after the death of a child.

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We developed the Navigate intervention to improve survival among vulnerable lung cancer patients. In this intervention-only study, we examined feasibility in terms of recruitment, retention, attendance, adherence, and acceptability to specify adjustments to study procedures and intervention components prior to a randomized trial. The Navigate intervention includes nurse navigation, patient-reported outcomes, and physical exercise.

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Background: A new primary cancer is a serious late effect of a pre-existing cancer diagnosis, and can be attributed to hereditary cancer syndromes, immune or hormonal factors, cancer treatment, or modifiable lifestyle or environmental factors. We investigated the absolute and relative incidence of second primary cancers in a large cohort of Danish cancer survivors. Furthermore, we examined the association between alcohol-related, smoking-related, virus-related, and hormone-related first and second primary cancers.

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Background: Parents who lose a child are at increased risk of impaired mental health, which may negatively affect their work ability. The aims of this study were to examine the risk for reduced labor market affiliation in parents who lost a child with cancer compared to a matched parent cohort, and factors associated with the bereaved parents' labor market affiliation.

Methods: We conducted a nationwide population-based cohort study using Danish registry data.

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Background: To identify non-small-cell lung cancer (NSCLC) patients in need of comprehensive support, we examined the association between patient and disease-related factors of vulnerability related to not receiving guideline-recommended treatment.

Material And Methods: We identified 14,597 non-small-cell lung cancer (NSCLC) patients with performance status <3 during 2013-2018 in the Danish Lung Cancer Registry. Multivariate logistic regression models were used to estimate Odds Ratios (ORs) and 95% confidence intervals (CIs) for receiving guideline-recommended treatment according to stage, comorbidities, age, performance status, long distance to hospital, cohabitation status, education and alcohol abuse.

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Child-centered communication in pediatric oncology can be challenging. We aimed to review communication interventions with children about cancer treatment and prognosis to identify potentially effective child-centered communication models and approaches. We updated a previous review on communication interventions in oncology and searched MEDLINE, Scopus, and PsychINFO for studies indexed between October 2019 up to October 2022.

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Background: Identification of socially vulnerable cancer patients in the health care system is difficult. Only little is known concerning changes in the patients' social circumstances during the trajectory. Such knowledge is valuable regarding the identification of socially vulnerable patients in the health care system.

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Importance: The unmet needs regarding symptom management of psychological distress among patients with breast cancer must be addressed. However, little evidence exists on effective interventions, such as nurse navigation.

Objective: To compare the long-term effects of the REBECCA (Rehabilitation After Breast Cancer) nurse navigation intervention vs usual care in patients with breast cancer who were psychologically vulnerable.

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Difficulties in recruiting newly bereaved families and following them over time present a major barrier in grief research following the death of a spouse/parent. We established FALCON-the first prospective nationwide cohort of families with children below age 18 years whose parent died in Denmark between April 2019 and July 2021. Data from parents and children were collected within 2 months of death with ongoing follow-up assessments up to 18 months post-death.

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Background: The effect of routine imaging in melanoma surveillance is unknown. In 2016, Denmark was the first country in the world to implement routine imaging with positron emission tomography-computed tomography with fluorodeoxyglucose (FDG PET-CT) in a nationwide, population-based surveillance program. This study aimed to determine the impact of surveillance with routine FDG PET-CT on hazard, cumulative incidence, and absolute risk of overall, locoregional, and distant recurrence detection in patients with stage IIB to IIID cutaneous melanoma.

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Context: Although specialized pediatric palliative care (SPPC) teams increasingly provide home-based care, the evidence of its impact has not yet been systematically evaluated.

Objectives: To examine the impact of home-based SPPC in children and adolescents with life-limiting conditions, regarding place of death, quality of life and symptom burden.

Methods: We searched Medline, EMBASE, CINAHL, PsycINFO, the Cochrane Central Register of Controlled Trials, Web of Science and Scopus for studies comparing children and adolescents with life-limiting conditions receiving home-based SPPC with children and adolescents not receiving home-based SPPC, or studies reporting before-and-after measurements.

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Patient representatives are increasingly engaged in quality in health care, and even though quality data are publicly available, correct interpretation may be challenging. We designed a randomized study with the primary aim to examine the association between preferred data presentation format and the interpretation of quality data among cancer patients and relatives. Surveys were distributed to the Danish Cancer Society Citizens' Panel between 31 March and 14 April 2019 and 55% completed the survey ( = 464) including six storyboards that presented authentic quality data in table format, league table and point estimates.

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