Skip to main content
SpringerLink
Log in

Informal caregiver quality of life in a palliative oncology population

  • Original Article
  • Published:
Supportive Care in Cancer Aims and scope Submit manuscript

Abstract

Purpose

Many patients with advanced cancer receive primary supports from informal caregivers (IC). As patient health deteriorates, IC assume increasing responsibility, often accompanied by distress. We investigated the quality of life (QOL) of IC of patients referred to a palliative radiotherapy (PRT) program.

Methods

IC accompanying patients to a dedicated PRT clinic completed a survey based on the validated Caregiver Quality of Life Index-Cancer (CQOLC). Demographics, burden, and engagement in support services were evaluated. Summary statistics were calculated, and parameters were assessed for association with CQOLC scores by a generalized linear model.

Results

Two hundred one surveys were analyzed representing 197 unique patients. The mean age was 68.3 years, with predominantly lung (25.0%) and prostate (19.3%) malignancies. 24.4% had been in hospital/long-term care within the previous 7 days. IC were 60.8% female, and 60.6% were the patient’s spouse. 69.5% lived with the patient and 38.3% were additionally employed. IC spent a daily mean of 6.6 h (SD 7) assisting with instrumental (72.5%) and basic (37.5%) activities of daily living. Mean CQOLC score was 82.1/140 (SD 20). 63.8% of IC had previously accessed support service(s), most commonly home care (37.2%) and pharmacy (29.1%). 55.9% indicated interest in services not yet accessed. Multivariate analysis revealed additional employment, cohabitation, poor patient performance status, and interest in accessing more support services significantly correlated with higher IC burden.

Conclusions

Employing the CQOLC to screen IC of patients referred to a PRT program permits early identification of vulnerable IC to facilitate linkage with appropriate supports.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

  1. Canadian Cancer Society’s Advisory Committee on Cancer Statistics Canadian cancer statistics 2018. Canadian Cancer Society, Toronto, p 2018

  2. Yabroff K, Kim Y (2009) Time costs associated with informal caregiving for cancer survivors. Cancer 115(18 Suppl):4362–4373

    Article  Google Scholar 

  3. Stommel M, Given C, Given B (1993) The cost of cancer home care to families. Cancer 71(5):1867–1874

    Article  CAS  Google Scholar 

  4. Ji J, Zoller B, Sundquist K et al (2012) Increased risks of coronary heart disease and stroke among spousal caregivers of cancer patients. Circulat 125(14):1742–1747

    Article  Google Scholar 

  5. Stenberg U, Ruland C, Miaskowski C (2010) Review of the literature on the effects of caring for a patient with cancer. PsychoOncol 19:1013–1025

    Article  Google Scholar 

  6. Pinquart M, Sorenson S (2007) Correlates of physical health of informal caregivers: a meta-analysis. J Gerontol B Psychol Sci Soc Sci 62(2):126–137

    Article  Google Scholar 

  7. Pitceathly C, Maguire P (2003) The psychological impact of cancer on patients’ partners and other key relatives: a review. Eur J Cancer 39:1517–1524

    Article  CAS  Google Scholar 

  8. Spatuzzi R, Giulietti M, Ricciuti M et al (2017) Quality of life and burden in family caregivers of patients with advanced cancer in active treatment settings and hospice care: a comparative study. Death Stud 41(5):276–283

    Article  Google Scholar 

  9. Grant M, Sun V, Fujinami R, Sidhu R, Otis-Green S, Juarez G, Klein L, Ferrell B (2013) Family caregiver burden, skills preparedness, and quality of life in non-small cell lung cancer. Oncol Nurs Forum 40(4):337–346

    Article  Google Scholar 

  10. Weitzner MA, McMillan SC, Jacobsen PB (1999) Family caregiver equality of life: differences between curative and palliative cancer treatment settings. J Pain Symptom Manag 17(6):418–428

    Article  CAS  Google Scholar 

  11. Ferrell B, Temel J, Temin S et al (2017) Integration of palliative care into standard oncology care: American Society of Clinical Oncology clinical practice guideline update. J Clin Oncol 35(1):96–112

    Article  Google Scholar 

  12. Ferrell B, Wittenberg E (2017) A review of family caregiving intervention trials in oncology. CA Cancer J Clin 67:318–325

    Article  Google Scholar 

  13. Dionne-Odom J, Azuero A, Lyons K et al (2015) Benefits of early versus delayed palliative care to informal family caregivers of patients with advanced cancer: outcomes from the ENABLE III randomized controlled trial. J Clin Oncol 33(13):1446–1452

    Article  Google Scholar 

  14. Sun V, Grant M, Koczywas M, Freeman B, Zachariah F, Fujinami R, Ferraro CD, Uman G, Ferrell B (2015) Effectiveness of an interdisciplinary palliative care intervention for family caregivers in lung cancer. Cancer 121(20):3737–3745

    Article  Google Scholar 

  15. McDonald J, Swami N, Hannon B, Lo C, Pope A, Oza A, Leighl N, Krzyzanowska MK, Rodin G, le LW, Zimmermann C (2017) Impact of early palliative care on caregivers of patients with advanced cancer: cluster randomised trial. Ann Oncol 28:163–168

    Article  CAS  Google Scholar 

  16. LeGuerrier B, Huang F, Spence W, Rose B, Middleton J, Palen M, Thvone K, Ravji S, Danielson B, Severin D, Chu KP, Fairchild A (2019) Evolution of the radiation therapist role in a multidisciplinary palliative radiation oncology clinic. J Med Imag Radiat Sci 50:17–23

    Article  Google Scholar 

  17. Weitzner M, Jacobsen P, Wagner H et al (1999) The caregiver quality of life index – cancer (CQOLC) scale: development and validation of an instrument to measure quality of life of the family caregiver of patients with cancer. Qual Life Res 8:55–63

    Article  CAS  Google Scholar 

  18. Weitzner M, McMillan S (1999) The caregiver quality of life index – cancer (CQOLC) scale: revalidation in a home hospice setting. J Palliat Care 15(2):13–20

    Article  CAS  Google Scholar 

  19. Tan JY, Molassiotis A, Lloyd-Williams M, Yorke J (2018) Burden, emotional distress and quality of life among informal caregivers of lung cancer patients: an exploratory study. Eur J Cancer Care 27(1):e12691

    Article  Google Scholar 

  20. Lapid M, Atherton P, Kung S et al (2016) Cancer caregiver quality of life: need for targeted intervention. PsychoOncol 25:1400–1407

    Article  Google Scholar 

  21. McMillan S, Small B, Weitzner M et al (2005) Impact of coping skills intervention with family caregivers of hospice patients with cancer: a randomized clinical trial. Cancer 106(1):214–222

    Article  Google Scholar 

  22. Adler N, Stewart J (eds) (2007) The MacArthur Scale of Subjective Social Status. MacArthur Research Network on SES & Health, University of California, San Francisco. San Francisco, CA. https://macses.ucsf.edu/research/psychosocial/subjective.php. Accessed 25 Sept 2018

  23. Belgacem B, Auclair C, Fedor M-C, Brugnon D, Blanquet M, Tournilhac O, Gerbaud L (2013) A caregiver educational program improves quality of life and burden for cancer patients and their caregivers: a randomised clinical trial. Eur J Oncol Nurs 17:870–876

    Article  Google Scholar 

  24. Grunfeld E, Coyle D, Whelan T, Clinch J, Reyno L, Earle CC, Willan A, Viola R, Coristine M, Janz T, Glossop R (2004) Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers. Can Med Assoc J 170(12):1795–1801

    Article  Google Scholar 

  25. Brazil K, Kaasalainen S, Williams A et al (2013) Comparing the experiences of rural and urban family caregivers of the terminally ill. Rural Rem Health 13:2250 Online: www.rrh.org.au/journal/article/2250. Accessed 17 Dec 2018

  26. Robinson C, Pesut B, Bottorff J et al (2009) Rural palliative care: a comprehensive review. J Palliat Med 12(3):253–258

    Article  Google Scholar 

  27. Hudson P, Trauer T, Kelly B, O'Connor M, Thomas K, Summers M, Zordan R, White V (2013) Reducing the psychological distress of family caregivers from home-based palliative care patients: short-term effects from a randomised controlled trial. PsychoOncol 22:1987–1993

    Article  Google Scholar 

  28. Kang J, Shin DW, Choi JE, Sanjo M, Yoon SJ, Kim HK, Oh MS, Kwen HS, Choi HY, Yoon WH (2013) Factors associated with positive consequences of serving as a family caregiver for a terminal cancer patient. PsychoOncol 22(3):564–571

    Article  Google Scholar 

  29. Kim Y, Baker F, Spillers R (2007) Cancer caregivers’ quality of life: effects of gender, relationship, and appraisal. J Pain Symptom Manag 34(3):294–304

    Article  Google Scholar 

  30. Hsu T, Loscalzo M, Ramani R, Forman S, Popplewell L, Clark K, Katheria V, Strowbridge R, Rinehart R, Smith D, Matthews K, Dillehunt J, Feng T, Smith D, Sun C, Hurria A (2017) Are disagreements in caregiver and patient assessment of patient health associated with increased caregiver burden in caregivers of older adults with cancer. Oncologist 22:1383–1391

    Article  Google Scholar 

Download references

Author information

Authors and Affiliations

  1. Department of Radiation Oncology, Cross Cancer Institute, University of Alberta, 11560 University Avenue, Edmonton, AB, T6G 1Z2, Canada

    Adele Duimering, Karen Chu, Fleur Huang, Diane Severin, Don Yee, Ericka Wiebe, Nawaid Usmani, Zsolt Gabos, Samir Patel, Brita Danielson, John Amanie, Wilson Roa & Alysa Fairchild

  2. Department of Psychosocial & Spiritual Resources, Cross Cancer Institute, University of Alberta, Edmonton, AB, Canada

    Jill Turner

  3. Department of Experimental Oncology, Cross Cancer Institute, University of Alberta, Edmonton, AB, Canada

    Sunita Ghosh

Authors
  1. Adele Duimering
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Jill Turner
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Karen Chu
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Fleur Huang
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Diane Severin
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Sunita Ghosh
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. Don Yee
    View author publications

    You can also search for this author in PubMed Google Scholar

  8. Ericka Wiebe
    View author publications

    You can also search for this author in PubMed Google Scholar

  9. Nawaid Usmani
    View author publications

    You can also search for this author in PubMed Google Scholar

  10. Zsolt Gabos
    View author publications

    You can also search for this author in PubMed Google Scholar

  11. Samir Patel
    View author publications

    You can also search for this author in PubMed Google Scholar

  12. Brita Danielson
    View author publications

    You can also search for this author in PubMed Google Scholar

  13. John Amanie
    View author publications

    You can also search for this author in PubMed Google Scholar

  14. Wilson Roa
    View author publications

    You can also search for this author in PubMed Google Scholar

  15. Alysa Fairchild
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Alysa Fairchild.

Ethics declarations

Conflict of interest

The authors declare that they have no competing interests.

Additional information

Publisher’s note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Electronic supplementary material

ESM 1

(PDF 283 kb)

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Duimering, A., Turner, J., Chu, K. et al. Informal caregiver quality of life in a palliative oncology population. Support Care Cancer 28, 1695–1702 (2020). https://doi.org/10.1007/s00520-019-04970-3

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s00520-019-04970-3

Keywords

Search

Navigation