The role of informal caregivers for patients with glioma: a systematic review and meta-synthesis of qualitative studies

Chen, Dan; Zhu, Jinfeng; Xu, Qiuning; Wang, Fang; Ji, Cuiling; Di, Hengdan; Yuan, Ping; Bai, Xiaoyan; Chen, Lu

doi:10.21037/atm-21-2761

Cited by 9 publications

(12 citation statements)

References 54 publications

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“…High levels of burden, distress, and unmet needs are not uncommon among caregivers. 19 While our previous study, comparing caregivers of stable LGG patients to those caring for patients with hematological malignancies, showed no great caregiver HRQOL impediments, 20 this remains a relatively unexplored area. Few studies have reported on caregivers of LGG patients specifically, and fewer still during long-term survivorship.…”

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confidence: 93%

Long-term wellbeing and neurocognitive functioning of diffuse low-grade glioma patients and their caregivers: A longitudinal study spanning two decades

et al. 2022

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Background While patients with diffuse low-grade glioma (LGG) often survive for years, there is a risk of tumour progression which may impact on patients’ long-term health-related quality of life (HRQOL) and neurocognitive functioning (NCF). We present a follow-up of LGG patients and their informal caregivers (T3) who took part in our previous HRQOL investigations (T1, M=7 and T2 M=13 years after diagnosis). Methods Participants completed HRQOL (SF-36; EORTC-BN20), fatigue (Checklist Individual Strength (CIS)), and depression (Center for Epidemiological Studies-Depression (CES-D)) questionnaires and underwent NCF assessments. T3 scores were compared with matched controls. Change over time (T1-T2-T3) on group and participant level were assessed. Where available, histology of the initial tumour was revised and immunohistochemical staining for IDH1 R132H mutant protein was performed. Results Thirty patients and nineteen caregivers participated. Of N=11 with tissue available, 3 patients had confirmed diffuse LGG. At T3, patients (M=26 years after diagnosis) had HRQOL and NCF similar to, or better than controls, yet 23.3% and 53.3% scored above the cut-off for depression (≥16 CES-D) and fatigue (≥35 CIS), respectively. Caregivers’ HRQOL was similar to controls, but reported high rates of fatigue (63.2%). Over time, patients’ mental health improved (p<.05). Minimal detectable change in HRQOL over time was observed in individual patients (30% improvement; 23.3% decline; 20% both improvement and decline) with 23.3% remaining stable. NCF remained stable or improved in 82.8% of patients. Conclusions While HRQOL and NCF do not appear greatly impacted during long-term survivorship in LGG, depressive symptoms and fatigue are persistent.

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confidence: 93%

Long-term wellbeing and neurocognitive functioning of diffuse low-grade glioma patients and their caregivers: A longitudinal study spanning two decades

et al. 2022

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“…Therefore, the challenge is to identify and target the relatives’ genuine needs for involvement. Chen et al 13 . suggest providing training opportunities for relatives and providing them with a standardized health care manual.…”

Section: Discussionmentioning

confidence: 99%

“…The finding on relatives’ wants for involvement is related to their individual information requirements, including prognostic information. However, relatives’ wants regarding information emerge dynamically as the condition of the patient changes, and relatives are not likely to know all of their future wants for information during a given consultation 13,14 . Furthermore, relatives may not always be emotionally ready to be presented with certain information or to make decisions as the disease progresses.…”

Section: Discussionmentioning

confidence: 99%

“…Patients with an MBT experience many symptoms, but the disease and its treatment also affect the patients’ relatives as a result of sudden changes in everyday life and uncertainty about the future. As a consequence of the rapid progression of the disease, including a high symptom burden, patients often depend on their relatives, which may cause changes in roles and relationships, as well as an emotional, financial, and psychological drain 9–13 . A recent systematic review concluded that the relatives of patients diagnosed with glioma experience a role transition during the disease and treatment trajectory 13 .…”

Section: Introductionmentioning

confidence: 99%

“…As a consequence of the rapid progression of the disease, including a high symptom burden, patients often depend on their relatives, which may cause changes in roles and relationships, as well as an emotional, financial, and psychological drain 9–13 . A recent systematic review concluded that the relatives of patients diagnosed with glioma experience a role transition during the disease and treatment trajectory 13 . The burden on relatives is multifaceted, and research has shown that relatives often neglect their own physical, emotional, and social needs 14–17 .…”

Section: Introductionmentioning

confidence: 99%

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Wants and needs for involvement reported by relatives of patients with a malignant brain tumor: a scoping review

Guldager

Nordentoft

Poulsen

et al. 2023

JBI Evidence Synthesis

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Objective: This scoping review identifies and maps the breadth of available evidence on relatives’ wants and needs for involvement throughout the course of the disease of patients with a malignant brain tumor. Introduction: Patients diagnosed with a malignant brain tumor often have a poor prognosis, including a rapid progression of the disease, with changing physical, cognitive, and psychosocial symptoms. The caregiver burden is described as multifaceted, and relatives often neglect their own physical, emotional, and social needs. Inclusion criteria: This review included studies that defined or assessed the wants and needs for involvement of relatives of patients with a malignant brain tumor throughout the disease and treatment trajectory. The populations were relatives of patients with a malignant brain tumor in various settings. Methods: The JBI methodology for scoping reviews was employed in accordance with a previously published a priori protocol. An extensive search was conducted in the MEDLINE (PubMed), CINAHL (EBSCO) and Embase (Ovid). Gray literature was searched for using Grey Matters (CADTH) and BASE. The initial search was conducted in February 2020 and updated in March 2022. This review was limited to studies published since January 2010 in English, German, or Scandinavian languages. 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. Textual data mapping of wants and needs for involvement were synthesized narratively using a basic qualitative content analysis The review findings are reported in this paper as a descriptive summary, with tables and figures to support the data. Results: The search identified 3830 studies, of which 10 were included. The studies were conducted in 6 countries and were published between 2010 and 2018. In total, 4 studies applied a qualitative study design that used semi-structured interviews, 2 studies applied a mix-method design that used questionnaires and semi-structured interviews, 1 study applied a multi-method design, and 3 studies used a quantitative survey. Research was conducted in a variety of settings, from an inpatient neurology center/neuro-oncology to post-bereavement. The findings showed that most of the relatives’ needs were related to the caregiver role. The relatives were actively involved in the patients’ disease and treatment trajectories. However, relatives were often required to adopt the caregiver role and a large amount of responsibility at short notice. Thus, they expressed their need for a stronger connection with health care professionals because their needs changed as rapidly as the disease progressed. Relatives also had a need related to maintaining hope, which was essential for their involvement, and their wants for involvement in the patients’ disease and treatment trajectories depended on a significant and timely amount of information. Conclusions: The findings reveal that relatives are actively involved in the patients’ disease and treatment trajectories. The relatives want and need support for their involvement, and these desires are related directly to the accessibility and availability of health care professionals, as the demands placed on them change rapidly throughout the progression of the disease. One way to address relatives’ wants and needs might be to further strengthen the relationship between the relatives and health care professionals. Supplemental Digital Content: A Danish-language version of the abstract of this review is available as Supplemental Digital Content [http://links.lww.com/SRX/A26].

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The burden of a brain tumor: guiding patient centric care in neuro-oncology

et al. 2022

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The role of informal caregivers for patients with glioma: a systematic review and meta-synthesis of qualitative studies

Cited by 9 publications

References 54 publications

Long-term wellbeing and neurocognitive functioning of diffuse low-grade glioma patients and their caregivers: A longitudinal study spanning two decades

Long-term wellbeing and neurocognitive functioning of diffuse low-grade glioma patients and their caregivers: A longitudinal study spanning two decades

Wants and needs for involvement reported by relatives of patients with a malignant brain tumor: a scoping review

The burden of a brain tumor: guiding patient centric care in neuro-oncology

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