Caregiver perceptions of end-of-life care in patients with high-grade glioma

Fortunato, John T.; Harn, Meredith Van; Haider, Sameah; Phillips, Joel; Walbert, Tobias

doi:10.1093/nop/npaa077

Cited by 8 publications

(10 citation statements)

References 41 publications

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“…highlighted the crucial role clinicians play in supporting people with brain tumours and proposed clinicians routinely ask questions about distress during consultations to identify problems experienced and initiate support where required. Fortunato et al 37 . also highlighted the importance of communicating with carers to improve end of life care and reduce carer distress burnout and bereavement.…”

Section: Discussionmentioning

confidence: 99%

“…Fortunato et al. 37 also highlighted the importance of communicating with carers to improve end of life care and reduce carer distress burnout and bereavement. Targeted communication skills training for clinicians focusing on communicating and assessing distress and unmet needs for people diagnosed with a brain tumour and their carers may assist clinicians in providing support and referring appropriately.…”

Section: Discussionmentioning

confidence: 99%

“…Renovanz et al10 highlighted the crucial role clinicians play in supporting people with brain tumours and proposed clinicians routinely ask questions about distress during consultations to identify problems experienced and initiate support where required. Fortunato et al37 also highlighted the importance of communicating with carers to improve end of life care and reduce F I G U R E 3 Range of the proportion of participants experiencing any brain cancer specific unmet needs from baseline to 6 months by distress trajectory group with indication of consistent increase (+), consistent decrease (−), or fluctuating proportions (~) over time F I G U R E 4 Range of the proportion of participants experiencing moderate to high brain cancer specific unmet needs from baseline to 6 months by distress trajectory group with indication of consistent increase (+), consistent decrease (−), or fluctuating proportions (~) over time carer distress burnout and bereavement. Targeted communication skills training for clinicians focusing on communicating and assessing distress and unmet needs for people diagnosed with a brain tumour and their carers may assist clinicians in providing support and referring appropriately.…”

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confidence: 99%

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Brain cancer patients' levels of distress and supportive care needs over time

et al. 2022

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This study aimed to describe patient self-reported distress over time and how this was associated with wellbeing, and supportive care needs over a 6-month period from commencing chemoradiotherapy for high grade glioma (HGG). Methods:In this prospective cohort study, participants completed surveys at three time points: before chemoradiotherapy, at 3 and 6 months. These included Distress Thermometer, Functional Assessment of Cancer/Brain Cancer Treatment-general (Fact-G/FACT-BR), Supportive Care Needs Scale (SF-34) and Brain Tumour Specific subscale. Patient survival time was also collected. Group-based trajectory modelling was performed. Multinominal logistic regression assessed variables associated with different distress trajectory groups.Results: One hundred and sixteen participants completed assessments at baseline, 89 participants at 3 and 64 at 6 months. Four distress trajectory groups were identified; consistent low distress (18%), low to high distress (38%), high-to low distress (24%) and consistent high distress (19%). Younger participants tended to report decreased distress over time, whereas older participants reported consistently high distress.High distress trajectory participants had less education, lower physical wellbeing, more unmet needs, but higher functional wellbeing compared to the low to high distress trajectory. The number of unmet needs paralleled the patterns of distressThis is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

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confidence: 99%

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Brain cancer patients' levels of distress and supportive care needs over time

et al. 2022

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“…A 3-step search strategy was utilized. As per the process recommended by JBI, 29 the first search consisted of an initial preliminary search of MEDLINE (PubMed), CINAHL (EBSCO), and Embase (Ovid) for the involvement of relatives of patients with an ABI. The search for gray literature was conducted in Grey Matters (a tool for searching health-related gray literature) and BASE (one of the world's biggest search engines for academic, open-access web resources).…”

Section: Search Strategymentioning

confidence: 99%

“…Findings were extracted directly from the included studies into a data extraction tool. A descriptive summary of the review findings is presented as recommended by JBI scoping review guidelines, 29 with tables and figures to support the data.…”

Section: Data Analysis and Presentationmentioning

confidence: 99%

Wants and needs for involvement experienced by relatives of patients with an acquired brain injury: a scoping review

Guldager¹,

Nordentoft²,

Poulsen³

et al. 2022

JBI Evidence Synthesis

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Objective: The objective of this scoping review was to identify and map the breadth of available evidence on relatives’ wants and needs for involvement in the care of patients with an acquired brain injury. Introduction: Acquired brain injuries often occur suddenly and unexpectedly. Experiencing an acquired brain injury has major consequences, not only for the patients—due to the devastating impact on their physical, cognitive, social, and psychological well-being—but also for the relatives who may need to take on a lifelong role as a carer. Research has cited some benefits of involving relatives in the care of patients, including positive effects on the patients’ health outcomes; however, there are few studies showing how relatives can be involved. Inclusion criteria: Studies that defined or assessed relatives’ wants and needs for involvement in the care of patients with an acquired brain injury in all settings were included. Studies were included if they described any kind of wants and needs for involvement experienced from the perspective of relatives. The review considered all study designs, except for literature reviews. Methods: The JBI methodology for conducting a scoping review was employed in accordance with an a priori published protocol. An extensive search was conducted in MEDLINE (PubMed), CINAHL (EBSCO), and Embase (Ovid). Gray literature was searched using Grey Matters and BASE. The initial search was conducted in February 2020 and updated in September 2021. This review was limited to studies published in English, German, or Scandinavian languages since January 2010. The data were extracted using a data extraction tool (authors, year of publication, country of origin, setting, study methods, and findings related to wants and needs for involvement) created by the authors. The review findings are reported as a descriptive summary, with tables and figures supporting the data. Results: The search identified 3854 studies, 31 of which were included. The studies were published between 2010 and 2021, and were conducted across 9 countries. In total, 16 studies applied a qualitative study design, 4 studies used a descriptive approach, 4 studies used a quantitative research design, 4 studies reported using a mixed methods design, and 3 studies employed a multi-methods design. The studies were conducted across a variety of settings, ranging from acute care to home. The international literature on the involvement of relatives of patients with acquired brain injuries comprises multiple published studies on different aspects of the topic and within various care contexts. The findings identified few studies describing wants and needs experienced by relatives in relation to involvement in the patient’s disease trajectory. Conclusions: The findings show that relatives’ wants and needs are primarily related to information and communication, but are also related to collaboration with health care professionals. The findings illustrate that the complexity of involvement is comprehensive, with multiple aspects...

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Neuro-oncology and supportive care: the role of the neurologist

Stec

Walbert

2022

Neurol Sci

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Caregiver perceptions of end-of-life care in patients with high-grade glioma

Cited by 8 publications

References 41 publications

Brain cancer patients' levels of distress and supportive care needs over time

Brain cancer patients' levels of distress and supportive care needs over time

Wants and needs for involvement experienced by relatives of patients with an acquired brain injury: a scoping review

Neuro-oncology and supportive care: the role of the neurologist

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