Carers of patients with high-grade glioma report high levels of distress, unmet needs, and psychological morbidity during patient chemoradiotherapy

Long, Anne; Halkett, Georgia K.B.; Lobb, Elizabeth A.; Shaw, Thérèse; Hovey, Elizabeth; Nowak, Anna K.

doi:10.1093/nop/npv039

Cited by 47Cancer survivorship and careNursing care and researchFamily Support in Illness

Carers of patients with high-grade glioma report high levels of distress, unmet needs, and psychological morbidity during patient chemoradiotherapy

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Long, Anne, Halkett, Georgia K.B., Lobb, Elizabeth A., Shaw, Thérèse, Hovey, Elizabeth, Nowak, Anna K.·2016·Neuro-Oncology Practice

DOI 10.1093/nop/npv039PMC PMC6668264

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Abstract

Background: Few studies have explored the unmet needs of carers of people with high-grade glioma. We aimed to determine carers' levels of distress during treatment, understand their support needs and explore predictors of distress. Methods: Carers of people with high-grade glioma undergoing chemoradiotherapy were recruited to this prospective, longitudinal cohort study. Carers completed the validated Supportive Care Needs Survey, Brain Tumour Specific Supportive Care Needs Scale, Distress Thermometer (DT), and General Health Questionnaire (GHQ-12). Questionnaires were administered during patients' chemoradiotherapy and 3 and 6 months later. Results: We recruited 118 carers who were mainly female (72%) and caring for spouse (82%). The mean age was 53 years (SD = 13.6; range, 21-89). Thirty-one percent of carers reported moderate distress (DT score 5-6/10) and 31% reported extreme distress (score 7-10/10) during combined chemoradiotherapy. Carer distress was associated with adverse GHQ scores (r = 0.61, P < .001). Seventy-two percent reported a negative financial impact of caring and 51% of those previously working full-time had taken leave or reduced working hours. The top 5 moderate/high unmet needs were: accessing prognostic information; accessing financial support and government benefits; accessible hospital parking; impact of caring on usual life; reducing stress in the patients' life. Conclusion: Carers reported substantial distress, and high distress levels were correlated with greater psychological impact and increased self-reporting of unmet needs. Future research should focus on interventions that aid in reducing carer distress.

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Caregiver distress arises not only from practical care tasks, but also from prognostic uncertainty, the need for vigilance regarding neurological deterioration, and the psychological impact of witnessing progressive cognitive and functional loss in the patient.
“These findings align with broader neuro-oncology literature in which caregiver distress arises not only from practical care tasks, but also from prognostic uncertainty, the need for vigilance regarding neurological deterioration, and the psychological impact of witnessing progressive cognitive and functional loss in the patient.11”
From Caregiver burden, quality of life, and psychosocial outcomes among informal caregivers of patients with glioma: A systematic review and meta-analysis (2026) · cites this paper as [11]
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The overall pattern of findings aligns with the broader psycho-oncology literature demonstrating elevated caregiver burden and psychological morbidity among caregivers of cancer patients, while also reflecting features that are particularly salient in neuro-oncology.
“The overall pattern of findings aligns with the broader psycho-oncology literature demonstrating elevated caregiver burden and psychological morbidity among caregivers of cancer patients, while also reflecting features that are particularly salient in neuro-oncology.11,30”
From Caregiver burden, quality of life, and psychosocial outcomes among informal caregivers of patients with glioma: A systematic review and meta-analysis (2026) · cites this paper as [11]

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Authors: Long, A., Halkett, G. K. B., Lobb, E. A., Shaw, T., Hovey, E., & Nowak, A. K.
Affiliations: The Kids Research Institute Australia (AU)
Corresponding author: Long, Anne
ORCID: Long, Anne
Halkett, Georgia K.B.
Lobb, Elizabeth A.
Shaw, Thérèse
Hovey, Elizabeth
Nowak, Anna K.
Venue: Neuro-Oncology Practice
Publisher: Oxford University Press (OUP)
Published: 2015-10-15
Volume: 3
Issue: 2
Pages: 105-112
ISSN: 2054-2577 (ISSN-L)
2054-2585
DOI: 10.1093/nop/npv039
PMC: PMC6668264
OpenAlex: W2215745827
Cited by: 46
References: 39
Citations by year: 2025: 5 · 2024: 11 · 2023: 7 · 2022: 8 · 2021: 6 · 2020: 2 · 2019: 2 · 2018: 1 · 2017: 2 · 2016: 1 · 2015: 1
FWCI: 0.73
Type: journal article
Language: en
Open access: bronze
doi.org
Locations: Neuro-Oncology Practice (publishedVersion)
Europe PMC (PubMed Central) (publishedVersion)
PubMed Central (publishedVersion)
PubMed (publishedVersion)
UWA Profiles and Research Repository (UWA) (submittedVersion)
eSpace (Curtin University) (submittedVersion)
HighWire Press Open Archive (submittedVersion)
Funders: WA Cancer and Palliative Care Network
Department of Health WA, and a HOTTAH
Clinical Oncology Society Australia (COSA)
Topics: Health Sciences › Medicine › Oncology › Cancer survivorship and care
Health Sciences › Health Professions › Pharmacy › Nursing care and research
Social Sciences › Sociology and Political Science › Family Support in Illness
Keywords: high-grade glioma, caregiver distress, supportive care needs, psychological morbidity, chemoradiotherapy, caregiver burden, prognostic information, predictors of distress

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Carers of patients with high-grade glioma report high levels of distress, unmet needs, and psychological morbidity during patient chemoradiotherapy

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