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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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References

  1. Boele FW, Heimans JJ, Aaronson NK, Taphoorn MJ, Postma TJ, Reijneveld JC, Klein M (2013) Health-related quality of life of significant others of patients with malignant CNS versus non-CNS tumors: a comparative study. J Neuro-Oncol 115:87–94

    Article  Google Scholar 

  2. Catt S, Chalmers A, Fallowfield L (2008) Psychosocial and supportive-care needs in high-grade glioma. Lancet Oncology 9:884–891

    Article  PubMed  Google Scholar 

  3. Gessler S, Low J, Daniells E, Williams R, Brough V, Tookman A, Jones L (2007) Screening for distress in cancer patients: is the distress thermometer a valid measure in the UK and does it measure change over time? Psychooncology 17:538–547

    Article  Google Scholar 

  4. Goldberg DP, Gater R, Sartorius N, Ustun T, Piccinelli M, Gureje O, Rutter C (1997) The validity of two versions of the GHQ in the WHO study of mental illness in general health care. Psychol Med 27:191–197

    Article  CAS  PubMed  Google Scholar 

  5. Halkett GK, Lobb EA, Rogers MM, Shaw T, Long AP, Wheeler HR, Nowak AK (2015) Predictors of distress and poorer quality of life in high grade glioma patients. Patient Educ Couns 98:525–532

    Article  PubMed  Google Scholar 

  6. Hudson P, Trauer T, Kelly B, O’Connor M, Thomas K, Zordan R, Summers M (2015) Reducing the psychological distress of family caregivers of home based palliative care patients: longer term effects from a randomised controlled trial. Psychooncology 24:19–24

    Article  PubMed  Google Scholar 

  7. Jacobs DI, Kumthekar P, Stell BV, Grimm SA, Rademaker AW, Rice L, Chandler JP, Muro K, Marymont M, Helenowski IB, Wagner LI, Raizer JJ (2014) Concordance of patient and caregiver reports in evaluating quality of life in patients with malignant gliomas and an assessment of caregiver burden. Neuro-Oncology Pract 1:47–54

    Article  Google Scholar 

  8. Janda M, Eakin E, Bailey L, Walker D, Troy K (2006) Supportive care needs of people with brain tumours and their carers. Support Care Cancer 14:1094–1103

    Article  PubMed  Google Scholar 

  9. Johnson DR, Ma DJ, Buckner JC, Hammack JE (2012) Conditional probability of long-term survival in glioblastoma. Cancer 118:5608–5613

    Article  PubMed  Google Scholar 

  10. Keir S, Calhoun-Eagan R, Swartz U, Friedman H (2008) Screening for distress in patients with brain cancer. Psychooncology 17:621–625

    Article  PubMed  Google Scholar 

  11. Lobb EA, Halkett GK, Nowak AK (2011) Patient and caregiver perceptions of communication of prognosis in high grade glioma. J Neuro-Oncol 104:315–322

    Article  CAS  Google Scholar 

  12. Long A, Halkett G, Lobb E, Shaw T, Hovey E, Nowak A (2016) Carers of patients with high-grade glioma report high levels of distress, unmet needs, and psychological morbidity during patient chemoradiotherapy. Neuro Oncol Pract 3:105–112

    Article  Google Scholar 

  13. McConigley R, Halkett G, Lobb E, Nowak A (2010) Caring for someone with high-grade glioma: a time of rapid change for caregivers. Palliat Med 24:473–479

    Article  PubMed  Google Scholar 

  14. Muñoz C, Juarez G, Muñoz ML, Portnow J, Fineman I, Badie B, Mamelak A, Ferrell B (2008) The quality of life of patients with malignant gliomas and their caregivers. Soc Work Health Care 47:455–478

    Article  PubMed  Google Scholar 

  15. Nipp RD, El-Jawahri A, Fishbein JN, Gallagher ER, Stagl JM, Park ER, Jackson VA, Pirl WF, Greer JA, Temel JS (2016) Factors associated with depression and anxiety symptoms in family caregivers of patients with incurable cancer. Ann Oncol 27:1607–1612

    Article  CAS  PubMed  Google Scholar 

  16. Pasacreta JV, Barg F, Nuamah I, McCorkle R (2000) Participant characteristics before and 4 months after attendance at a family caregiver cancer education program. Cancer Nurs 23:295–303

    Article  CAS  PubMed  Google Scholar 

  17. Petruzzi A, Finocchiaro CY, Lamperti E, Salmaggi A (2013) Living with a brain tumor: reaction profiles in patients and their caregivers. Support Care Cancer 21:1105–1111

    Article  PubMed  Google Scholar 

  18. Rooney AG, McNamara S, Mackinnon M, Fraser M, Rampling R, Carson A, Grant R (2013) The frequency, longitudinal course, clinical associations, and causes of emotional distress during primary treatment of cerebral glioma. Neuro-Oncology 15:635–643

    Article  PubMed  PubMed Central  Google Scholar 

  19. Schlomer GL, Bauman S, Card NA (2010) Best practices for missing data management in counseling psychology. J Couns Psychol 57:1–10

    Article  PubMed  Google Scholar 

  20. Schmer C, Ward-Smith P, Latham S, Salacz M (2008) When a family member has a malignant brain tumor: the caregiver perspective. J Neurosci Nurs 40:78–84

    Article  PubMed  Google Scholar 

  21. Sizoo EM, Pasman HR, Dirven L, Marosi C, Grisold W, Stockhammer G, Egeter J, Grant R, Chang S, Heimans JJ, Deliens L, Reijneveld JC, Taphoorn MJ (2014) The end-of-life phase of high-grade glioma patients: a systematic review. Support Care Cancer 22:847–857

    Article  PubMed  Google Scholar 

  22. Stupp R, Mason W, van den Bent M, Weller M, Fisher B, Taphoorn M, Belanger K, Brandes A (2005) Radiotherapy plus concomitant and adjuvant temozolomide for glioblastoma. N Engl J Med 352:987–996

    Article  CAS  PubMed  Google Scholar 

  23. Thomas C, Morris SM, Harman JC (2002) Companions through cancer: the care given by informal carers in cancer contexts. Soc Sci Med 54:529–544

    Article  PubMed  Google Scholar 

  24. Trad W, Koh ES, Daher M, Bailey A, Kastelan M, Legge D, Fleet M, Simpson GK, Hovey E (2015) Screening for psychological distress in adult primary brain tumor patients and caregivers: considerations for cancer care coordination. Frontiers Oncol 5:203

    Article  Google Scholar 

  25. Wasner M, Paal P, Borasio GD (2013) Psychosocial care for the caregivers of primary malignant brain tumor patients. J Social Work end-of-Life Palliat Care 9:74–95

    Article  Google Scholar 

  26. Wilczek K, Mangan H, Barnett C, White K (2016) Meeting the needs of family carers in the bone marrow transplant setting. Bone Marrow Transplant 51:S520

    Article  Google Scholar 

  27. Zwahlen D, Hagenbuch N, Carley MI, Recklitis CJ, Buchi S (2008) Screening cancer patients’ families with the distress thermometer (DT): a validation study. Psycho-Oncology 17:959–966

    Article  PubMed  Google Scholar 

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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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