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Distress and psychological morbidity do not reduce over time in carers of patients with high-grade glioma

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Abstract

Purpose

This study aimed to determine how carer distress and psychological morbidity change over time following a patient’s diagnosis of high-grade glioma (HGG) and identify factors associated with changes in carers’ psychological status.

Methods

Carers of patients with HGG planned for chemoradiotherapy were recruited to this longitudinal cohort study. Carers completed questionnaires during patients’ chemoradiotherapy and 3 and 6 months later including the following: the Distress Thermometer (DT); General Health Questionnaire-12 (GHQ-12); and three single-item questions about understanding of information presented by health professionals, confidence to care and preparedness to care for their relative/friend. Linear latent growth models were applied.

Results

The time 1 questionnaire was completed by 118 carers, of these 70 carers provided responses to the third time point. Carer distress and psychological morbidity were most prominent proximal to diagnosis, but remained high over time. Sixty-two percent of participants had moderate or high distress on the DT at time 1, 61% at time 2 and 58% at time 3. Scores on the DT and the GHQ-12 correlated significantly at all time points as did changes in scores over time (p < .001). However, for individual carers, the DT or GHQ-12 scores at one time point did not strongly predict scores at subsequent time points.

Conclusion

In carers of patients with HGG, distress levels are consistently high and cannot be predicted at any time point. Carers should be monitored over time to identify evolving psychological morbidity. The single-item DT correlates highly with GHQ-12 scores and is a suitable tool for rapid repeated screening.

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Acknowledgements

This project was funded by the Western Australian Cancer and Palliative Care Network, the Department of Health Western Australia and a HOTTAH grant provided by the Clinical Oncology Society of Australia. The authors thank the participants in the study, the sites involved in recruitment and Celine Fournier and Jenny Clarke for their assistance in data collection.

Author information

Authors and Affiliations

  1. School of Nursing, Midwifery and Paramedicine, Faculty of Health Sciences, Curtin University, GPO Box U1987, Bentley, Perth, WA, 6845, Australia

    Georgia K. B. Halkett & Michelle M. Sinclair

  2. Calvary Health Care Kogarah and Cunningham Centre for Palliative Care, Sydney, NSW, Australia

    Elizabeth A. Lobb

  3. School of Medicine, The University of Notre Dame, Sydney, NSW, Australia

    Elizabeth A. Lobb

  4. Telethon Kids Institute, University of Western Australia, Perth, Australia

    Thèrése Shaw

  5. Department of Psychiatry, Sir Charles Gairdner Hospital, Perth, WA, Australia

    Lisa Miller

  6. Department of Health WA, WA Cancer and Palliative Care Network, Perth, WA, Australia

    Lisa Miller

  7. Department of Medical Oncology, Prince of Wales Hospital, Randwick, NSW, Australia

    Elizabeth Hovey

  8. Department of Medicine, University of New South Wales, Sydney, Australia

    Elizabeth Hovey

  9. Department of Medical Oncology, Sir Charles Gairdner Hospital, Nedlands, WA, Australia

    Anna K. Nowak

  10. School of Medicine and Pharmacology, University of Western Australia, Nedlands, WA, Australia

    Anna K. Nowak

Authors
  1. Georgia K. B. Halkett
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  2. Elizabeth A. Lobb
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  3. Thèrése Shaw
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  4. Michelle M. Sinclair
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  5. Lisa Miller
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  6. Elizabeth Hovey
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  7. Anna K. Nowak
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Corresponding author

Correspondence to Georgia K. B. Halkett.

Ethics declarations

Human Research Ethics Committee approval was gained from Curtin University and participating sites.

Conflict of interest

The authors declare that they have no conflicts of interest. We have full control of all primary data and agree to allow the journal to review the data if requested.

Additional information

Key messages

This study demonstrates that in carers of patients with high-grade glioma, distress, anxiety and depression are consistently high and scores cannot be predicted at any time point based on that individual’s previous scores. Carers need to be monitored over time to identify evolving psychological morbidity. The Distress Thermometer is a suitable tool for monitoring changes in carer distress.

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Halkett, G.K.B., Lobb, E.A., Shaw, T. et al. Distress and psychological morbidity do not reduce over time in carers of patients with high-grade glioma. Support Care Cancer 25, 887–893 (2017). https://doi.org/10.1007/s00520-016-3478-6

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  • DOI: https://doi.org/10.1007/s00520-016-3478-6

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