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Predicting distress among people who care for patients living longer with high-grade malignant glioma

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Abstract

Purpose

Caregivers of patients living longer with high-grade malignant glioma (HGG) have the unique challenge of caring for a person who may have cognitive impairment, along with cancer-related issues over a prolonged period of time. This study aims to detail the psychosocial profile of long-term caregivers, to describe their perceptions of the patient’s quality of life and to examine predictors of their psychological distress.

Methods

Sixty-nine caregivers (48 %) of eligible patients with HGG surviving over 2 years were recruited from two Australian metropolitan tertiary hospitals. Caregivers completed cross-sectional measures of psychological distress (GHQ-12), caregiver impact (FACQ-PC) and patient functional well-being (FACT-Br TOI). Correlational analyses identified factors related to caregiver psychological distress. Those of significance (p ≤ .01) were examined using multiple regression models to determine their predictive value.

Results

Caregivers were mostly female (73 %), spouses (67 %), cohabiting (78 %) and were caring for patients surviving a median of 5.9 years since diagnosis. Whilst caregivers overall reported minimal psychological distress, 28 % endorsed moderate to severe psychological distress, warranting clinical attention. Caregiver strain and low patient functional well-being both significantly predicted caregiver psychological distress (adjusted R 2 = .35, F(4, 60) = 17.7, p < .001), accounting for a moderate amount (35 %) of variance. Other typical factors such as duration of caregiving, performance status, symptom burden and disease or demographic related factors were not predictive.

Conclusions

Psychological distress affects a significant proportion of caregivers of patients living longer with HGG. The presence of caregiver strain and low patient functional well-being are the most important predictors of psychological distress among this cohort of caregivers.

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Acknowledgments

Dr. Jeremy Ruben and Ms. Robin Smith (William Buckland Radiotherapy Oncology Service)

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The authors have no competing interests.

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Correspondence to B. Russell.

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Russell, B., Collins, A., Dowling, A. et al. Predicting distress among people who care for patients living longer with high-grade malignant glioma. Support Care Cancer 24, 43–51 (2016). https://doi.org/10.1007/s00520-015-2739-0

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