Factors associated with psychological distress in caregivers of patients with malignant gliomas

Forst, Deborah; Podgurski, Alyx F.; Quain, Katharine; Landay, Sophia; Anand, Maya; Kaslow-Zieve, Emilia; Mesa, Michelle; Jacobs, Jamie M.; Dietrich, Jörg; Parsons, Michael; Horick, Nora; Greer, Joseph A.; Batchelor, Tracy T.; Jackson, Vicki A.; El‐Jawahri, Areej; Temel, Jennifer S.

doi:10.1007/s00520-022-06989-5

Cited by 5 publications

(8 citation statements)

References 44 publications

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“…Participants were randomized to the Tele-MAST intervention or standard care by a researcher independent of the study. Randomization was stratified according to baseline distress (DT mild-tomoderate [4][5][6][7] vs. severe [≥8]) and family involvement (yes/no) in terms of whether caregivers consented to participate in the trial. A predetermined computer-generated random sequence was used, with allocation concealed using sequentially numbered sealed opaque envelopes.…”

Section: Participant Consent and Randomizationmentioning

confidence: 99%

“…2,3 High rates of depression and anxiety (30%-50%) persist beyond the initial treatment phase for both individuals with PBT and caregivers. 4,5 Despite the significant psychosocial impacts, there are few evidence-based interventions for improving mental health and QoL of people with PBT and their caregivers. 6,7 In the first controlled psychosocial intervention trial for people with PBT, Ownsworth et al 8 evaluated the Making Sense of Brain Tumor (MAST) program, delivered face-to-face in people's homes (n = 50).…”

Section: Introductionmentioning

confidence: 99%

“…Despite variations in disease characteristics, treatment pathways and prognosis, 2 individuals with PBT regardless of subtype experience stressors related to diagnosis and complex neurocognitive impairments which significantly impact their mental health 2,3 . High rates of depression and anxiety (30%–50%) persist beyond the initial treatment phase for both individuals with PBT and caregivers 4,5 …”

Section: Introductionmentioning

confidence: 99%

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Evaluation of the telehealth making sense of brain tumor psychological support intervention for people with primary brain tumor and their caregivers: A randomized controlled trial

et al. 2023

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ObjectiveThis pragmatic randomized control trial aimed to evaluate clinical efficacy of the Making Sense of Brain Tumour program delivered via videoconferencing (Tele‐MAST) for improving mental health and quality of life (QoL) relative to standard care in individuals with primary brain tumor (PBT).MethodAdults with PBT experiencing at least mild distress (Distress Thermometer ≥4) and caregivers were randomly allocated to the 10‐session Tele‐MAST program or standard care. Mental health and QoL were assessed pre‐intervention, post‐intervention (primary endpoint), and 6‐weeks and 6‐months follow‐up. The primary outcome was clinician‐rated depressive symptoms on the Montgomery‐Asberg Depression Rating Scale.Results82 participants with PBT (34% benign, 20% lower‐grade glioma, 46% high‐grade glioma) and 36 caregivers were recruited (2018–2021). Controlling for baseline functioning, Tele‐MAST participants with PBT had lower depressive symptoms at post‐intervention (95% CI: 10.2–14.6, vs. 15.2–19.6, p = 0.002) and 6‐weeks post‐intervention (95% CI: 11.5–15.8 vs. 15.6–19.9, p = 0.010) than standard care, and were almost 4 times more likely to experience clinically reduced depression (OR, 3.89; 95% CI: 1.5–9.9). Tele‐MAST participants with PBT also reported significantly better global QoL, emotional QoL and lower anxiety at post‐intervention and 6‐weeks post‐intervention than standard care. There were no significant intervention effects for caregivers. At 6‐months follow‐up participants with PBT who received Tele‐MAST reported significantly better mental health and QoL relative to pre‐intervention.ConclusionsTele‐MAST was found to be more effective for reducing depressive symptoms at post‐intervention than standard care for people with PBT but not caregivers. Tailored and extended psychological support may be beneficial for people with PBT.

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Section: Participant Consent and Randomizationmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Evaluation of the telehealth making sense of brain tumor psychological support intervention for people with primary brain tumor and their caregivers: A randomized controlled trial

et al. 2023

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“…Such effects compromise individuals' independence and social participation and place considerable strain on family relationships 8,9 . High rates of psychological distress have been reported in PwBT (22%–48%) 10–13 and family caregivers (26%–62%) 14–17 …”

Section: Introductionmentioning

confidence: 99%

“…8,9 High rates of psychological distress have been reported in PwBT (22%-48%) [10][11][12][13] and family caregivers (26%-62%). [14][15][16][17] Supportive care in cancer [18][19][20] and brain tumor 21,22 refers to approaches, interventions, and services aiming to meet individual and family members' information, emotional, spiritual, social, or practical support needs across the disease trajectory. 23,24 Integral to supportive care, psychosocial support entails diverse components including psychoeducation, counseling or emotional support, and family, peer, and spiritual support to help individuals and/or family members to understand and cope with the illness.…”

Section: Introductionmentioning

confidence: 99%

Access to psychosocial support for people with brain tumor and family members: Healthcare professional perspectives

et al. 2023

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Objectives: Ongoing access to psychosocial support is important to maintain the well-being of people with brain tumor (PwBT) and their families; yet, there is limited knowledge of psychosocial care access. This qualitative study aimed to develop an understanding of psychosocial support pathways specific to PwBT from the perspectives of Australian healthcare professionals. Methods: Semi-structured interviews were conducted with 21 healthcare professionals working in hospital and community services supporting PwBT and their family members. Transcribed interviews were coded and analyzed thematically. Results: The three major themes identified were: (1) Challenges in fitting people into the care system within existing pathways; (2) Benefits of longer-term care coordination and interdisciplinary connections; and (3) Brain tumor affects the whole family. Despite established psychosocial care pathways, service access varied and lacked continuity for individuals with lower-grade glioma and benign tumors across the illness trajectory.This 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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Measuring everyday functioning in patients with brain tumor: The long rows yet to hoe

Wefel

Woods

2022

Neuro-Oncology Practice

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Factors associated with psychological distress in caregivers of patients with malignant gliomas

Cited by 5 publications

References 44 publications

Evaluation of the telehealth making sense of brain tumor psychological support intervention for people with primary brain tumor and their caregivers: A randomized controlled trial

Evaluation of the telehealth making sense of brain tumor psychological support intervention for people with primary brain tumor and their caregivers: A randomized controlled trial

Access to psychosocial support for people with brain tumor and family members: Healthcare professional perspectives

Measuring everyday functioning in patients with brain tumor: The long rows yet to hoe

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