Skip to main content

Advertisement

SpringerLink
Log in

Impact of family caregivers’ awareness of the prognosis on their quality of life/depression and those of patients with advanced cancer: a prospective cohort study

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

Abstract

Purpose

A caregiver’s prognostic awareness can affect clinical decisions for the patient. The purpose of this study was to examine the impact of family caregivers’ prognostic awareness on the quality of life (QOL) and emotional state of both patients with advanced cancer and their caregivers.

Methods

This prospective cohort study was conducted from December of 2016 to January of 2018. A total of 159 patients with advanced cancer and an equal number of caregivers participated. The investigation tools used include the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-C15-Palliative, the McGill Quality of Life Questionnaire, and the Patient Health Questionnaire-9, and evaluation was performed at baseline, 3 months, and 6 months. Covariance analysis with a general linear modeling was used to compare changes in quality of life scores according to the caregivers’ awareness of the prognosis.

Results

Mean patient overall QOL score increased in the group of caregivers who were aware of prognosis and decreased in the caregivers who were not aware of the prognosis (p = 0.018). The changes over time in the patients’ QOL scores associated with symptoms improved with caregiver awareness (pain, p = 0.017; dyspnea, p = 0.048; appetite loss, p = 0.045). The percentage of depressed patients was smaller after 3 months in the group with caregivers aware of the prognosis (baseline to 3 months p = 0.028). Caregivers who did not understand their patients’ prognosis exhibited better existential well-being (p = 0.036), and the incidence of depression was lower in this group at 3 months (p = 0.024).

Conclusion

Caregivers’ prognostic awareness may improve the quality of life and mood in patients with advanced cancer; however, this awareness may harm the quality of life and mood of the caregivers. These results may aid in developing in-depth interventions regarding prognosis for both patients and their caregivers.

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

Fig. 1
Fig. 2
Fig. 3
Fig. 4

Similar content being viewed by others

References

  1. Bazzi WM, Sjoberg DD, Feuerstein MA, Maschino A, Verma S, Bernstein M, O’Brien MF, Jang T, Lowrance W, Motzer RJ, Russo P (2015) Long-term survival rates after resection for locally advanced kidney cancer: Memorial Sloan Kettering Cancer Center 1989 to 2012 experience. J Urol 193(6):1911–1916. https://doi.org/10.1016/j.juro.2014.12.022

    Article  PubMed  Google Scholar 

  2. Yagi A, Ueda Y, Kakuda M, Tanaka Y, Ikeda S, Matsuzaki S, Kobayashi E, Morishima T, Miyashiro I, Fukui K, Ito Y, Nakayama T, Kimura T (2019) Epidemiological and clinical analyses of cervical cancer using data from the population-based Osaka cancer registry. Cancer Res 79:1252–1259. https://doi.org/10.1158/0008-5472.can-18-3109

    Article  CAS  PubMed  Google Scholar 

  3. Brédart A, Kop JL, Efficace F, Beaudeau A, Brito T, Dolbeault S, Aaronson N, for the EORTC Quality of Life Group (2015) Quality of care in the oncology outpatient setting from patients’ perspective: a systematic review of questionnaires’ content and psychometric performance. Psychooncology 24(4):382–394. https://doi.org/10.1002/pon.3661

    Article  PubMed  Google Scholar 

  4. Romito F, Goldzweig G, Cormio C, Hagedoorn M, Andersen BL (2013) Informal caregiving for cancer patients. Cancer 119(Suppl 11):2160–2169. https://doi.org/10.1002/cncr.28057

    Article  PubMed  Google Scholar 

  5. Northouse LL, Katapodi MC, Song L, Zhang L, Mood DW (2010) Interventions with family caregivers of cancer patients: meta-analysis of randomized trials. CA Cancer J Clin 60(5):317–339. https://doi.org/10.3322/caac.20081

    Article  PubMed  PubMed Central  Google Scholar 

  6. Fumis R, De Camargo B, Del Giglio A (2011) Physician, patient and family attitudes regarding information on prognosis: a Brazilian survey. Ann Oncol 23:205–211. https://doi.org/10.1093/annonc/mdr049

    Article  PubMed  Google Scholar 

  7. Applebaum AJ, Buda K, Kryza-Lacombe M, Buthorn JJ, Walker R, Shaffer KM, D’Agostino TA, Diamond EL (2018) Prognostic awareness and communication preferences among caregivers of patients with malignant glioma. Psychooncology 27(3):817–823. https://doi.org/10.1002/pon.4581

    Article  CAS  PubMed  Google Scholar 

  8. Oh DY, Kim JE, Lee CH, Lim JS, Jung KH, Seog Heo D, Bang YJ, Kyeong Kim N (2004) Discrepancies among patients, family members, and physicians in Korea in terms of values regarding the withholding of treatment from patients with terminal malignancies. Cancer 100(9):1961–1966. https://doi.org/10.1002/cncr.20184

    Article  PubMed  Google Scholar 

  9. Langer SL, Brown JD, Syrjala KL (2009) Intrapersonal and interpersonal consequences of protective buffering among cancer patients and caregivers. Cancer 115(S18):4311–4325. https://doi.org/10.1002/cncr.24586

    Article  PubMed  Google Scholar 

  10. Yun YH, Kwon YC, Lee MK, Lee WJ, Jung KH, Do YR, Kim S, Heo DS, Choi JS, Park SY (2010) Experiences and attitudes of patients with terminal cancer and their family caregivers toward the disclosure of terminal illness. J Clin Oncol 28(11):1950–1957. https://doi.org/10.1200/JCO.2009.22.9658

    Article  PubMed  Google Scholar 

  11. Lee MK, Baek SK, Kim S-Y, Heo DS, Yun YH, Park SR et al (2013) Awareness of incurable cancer status and health-related quality of life among advanced cancer patients: a prospective cohort study. Palliat Med 27(2):144–154. https://doi.org/10.1177/0269216311429042

    Article  PubMed  Google Scholar 

  12. Parks SM, Winter L, Santana AJ, Parker B, Diamond JJ, Rose M, Myers RE (2011) Family factors in end-of-life decision-making: family conflict and proxy relationship. J Palliat Med 14(2):179–184. https://doi.org/10.1089/jpm.2010.0353

    Article  PubMed  PubMed Central  Google Scholar 

  13. Shin DW, Cho J, Kim SY, Chung IJ, Kim SS, Yang HK, Ahn E, Park BR, Seo H, Park JH (2015) Discordance among patient preferences, caregiver preferences, and caregiver predictions of patient preferences regarding disclosure of terminal status and end-of-life choices. Psychooncology 24(2):212–219. https://doi.org/10.1002/pon.3631

    Article  PubMed  Google Scholar 

  14. Li Q, Loke AY (2014) A literature review on the mutual impact of the spousal caregiver–cancer patients dyads:‘communication’,‘reciprocal influence’, and ‘caregiver–patient congruence’. Eur J Oncol Nurs 18(1):58–65. https://doi.org/10.1016/j.ejon.2013.09.003

    Article  PubMed  Google Scholar 

  15. El-Jawahri A, Traeger L, Park ER, Greer JA, Pirl WF, Lennes IT et al (2014) Associations among prognostic understanding, quality of life, and mood in patients with advanced cancer. Cancer 120(2):278–285. https://doi.org/10.1002/cncr.28369

    Article  PubMed  Google Scholar 

  16. Nipp RD, Greer JA, El-Jawahri A, Moran SM, Traeger L, Jacobs JM et al (2017) Coping and prognostic awareness in patients with advanced cancer. J Clin Oncol 35(22):2551–2557. https://doi.org/10.1200/JCO.2016.71.3404

    Article  PubMed  PubMed Central  Google Scholar 

  17. Greer JA, Pirl WF, Jackson VA, Muzikansky A, Lennes IT, Gallagher ER, Prigerson HG, Temel JS (2014) Perceptions of health status and survival in patients with metastatic lung cancer. J Pain Symptom Manag 48(4):548–557. https://doi.org/10.1016/j.jpainsymman.2013.10.016

    Article  Google Scholar 

  18. Wright AA, Zhang B, Ray A, Mack JW, Trice E, Balboni T, Mitchell SL, Jackson VA, Block SD, Maciejewski PK, Prigerson HG (2008) Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA 300(14):1665–1673. https://doi.org/10.1001/jama.300

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  19. Innes S, Payne S (2009) Advanced cancer patients’ prognostic information preferences: a review. Palliat Med 23(1):29–39. https://doi.org/10.1177/0269216308098799

    Article  CAS  PubMed  Google Scholar 

  20. Thompson GN, Chochinov HM, Wilson KG, McPherson CJ, Chary S, O’Shea FM, Kuhl DR, Fainsinger RL, Gagnon PR, Macmillan KA (2009) Prognostic acceptance and the well-being of patients receiving palliative care for cancer. J Clin Oncol 27(34):5757–5762. https://doi.org/10.1200/JCO.2009.22.9799

    Article  PubMed  Google Scholar 

  21. Lichtenthal WG, Nilsson M, Zhang B, Trice ED, Kissane DW, Breitbart W, Prigerson HG (2009) Do rates of mental disorders and existential distress among advanced stage cancer patients increase as death approaches? Psychooncology 18(1):50–61. https://doi.org/10.1002/pon.1371

    Article  PubMed  PubMed Central  Google Scholar 

  22. Shaffer KM, Kim Y, Carver CS, Cannady RS (2017) Effects of caregiving status and changes in depressive symptoms on development of physical morbidity among long-term cancer caregivers. Health Psychol 36(8):770–778. https://doi.org/10.1037/hea0000528

    Article  PubMed  PubMed Central  Google Scholar 

  23. Shin JY, Kang TI, Noll RB, Choi SW (2018) Supporting caregivers of patients with cancer: a summary of technology-mediated interventions and future directions. Am Soc Clin Oncol Educ Book 38:838–849. https://doi.org/10.1200/EDBK_201397

    Article  PubMed  Google Scholar 

  24. Enzinger AC, Zhang B, Schrag D, Prigerson HG (2015) Outcomes of prognostic disclosure: associations with prognostic understanding, distress, and relationship with physician among patients with advanced cancer. J Clin Oncol 33(32):3809–3816. https://doi.org/10.1200/JCO.2015.61.9239

    Article  PubMed  PubMed Central  Google Scholar 

  25. Lundquist G, Rasmussen BH, Axelsson B (2011) Information of imminent death or not: does it make a difference? J Clin Oncol 29(29):3927–3931. https://doi.org/10.1200/JCO.2011.34.6247

    Article  PubMed  Google Scholar 

  26. Epstein AS, Prigerson HG, O’Reilly EM, Maciejewski PK (2016) Discussions of life expectancy and changes in illness understanding in patients with advanced cancer. J Clin Oncol 34(20):2398–2403. https://doi.org/10.1200/JCO.2015.63.6696

    Article  PubMed  PubMed Central  Google Scholar 

  27. Groenvold M, Petersen MA, Aaronson NK, Arraras JI, Blazeby JM, Bottomley A, Fayers PM, de Graeff A, Hammerlid E, Kaasa S, Sprangers MA, Bjorner JB, EORTC Quality of Life Group (2006) The development of the EORTC QLQ-C15-PAL: a shortened questionnaire for cancer patients in palliative care. Eur J Cancer 42(1):55–64. https://doi.org/10.1016/j.ejca.2005.06.022

    Article  PubMed  Google Scholar 

  28. Cohen SR, Mount BM, Strobel MG, Bui F (1995) The McGill Quality of Life Questionnaire: a measure of quality of life appropriate for people with advanced disease. A preliminary study of validity and acceptability. Palliat Med 9(3):207–219. https://doi.org/10.1177/026921639500900306

    Article  CAS  PubMed  Google Scholar 

  29. Shin DW, Choi JE, Miyashita M, Choi JY, Kang J, Baik YJ, Mo HN, Park J, Kim HJ, Park EC (2011) Cross-cultural application of the Korean version of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Core 15-Palliative Care. J Pain Symptom Manag 41(2):478–484. https://doi.org/10.1016/j.jpainsymman.2010.05.009

    Article  Google Scholar 

  30. Kim SH, Yun Y, Lee CG, Choi YS, Lee WS, Kim S-Y et al (2007) Validation study of the Korean version of the McGill Quality of Life Questionnaire. Palliat Med 21(5):441–447. https://doi.org/10.1177/0269216307079816

    Article  PubMed  Google Scholar 

  31. Spitzer RL, Kroenke K, Williams JB, Group, P. H. Q. P. C. S (1999) Validation and utility of a self-report version of PRIME-MD: the PHQ primary care study. JAMA 282(18):1737–1744. https://doi.org/10.1001/jama.282.18.1737

    Article  CAS  PubMed  Google Scholar 

  32. Association, A. P (2013) Diagnostic and statistical manual of mental disorders (DSM-5®). American Psychiatric Pub

  33. Choi HS, Choi JH, Park KH, Joo KJ, Ga H, Ko HJ et al (2007) Standardization of the Korean version of Patient Health Questionnaire-9 as a screening instrument for major depressive disorder. Korean J Fam Med 28(2):114–119

    Google Scholar 

  34. Kim S, Ko Y, Kwon S, Shin DY, Kim CH, Yang SH, Cho SJ, Na II (2014) Family caregivers’ awareness of illness and attitude toward disclosure during chemotherapy for advanced cancer. Psychooncology 23(11):1300–1306. https://doi.org/10.1002/pon.3565

    Article  PubMed  Google Scholar 

  35. Papadopoulos A, Vrettos I, Kamposioras K, Anagnostopoulos F, Giannopoulos G, Pectasides D, Niakas D, Economopoulos T (2011) Impact of cancer patients’ disease awareness on their family members’ health-related quality of life: a cross-sectional survey. Psychooncology 20(3):294–301. https://doi.org/10.1002/pon.1731

    Article  CAS  PubMed  Google Scholar 

  36. Nipp RD, El-Jawahri A, Fishbein JN, Gallagher ER, Stagl JM, Park ER et al (2016) Factors associated with depression and anxiety symptoms in family caregivers of patients with incurable cancer. Ann Oncol 27(8):1607–1612. https://doi.org/10.1093/annonc/mdw205

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  37. Caqueo-Urizar A, Alessandrini M, Urzua A, Zendjidjian X, Boyer L, Williams DR (2017) Caregiver’s quality of life and its positive impact on symptomatology and quality of life of patients with schizophrenia. Health Qual Life Outcomes 15(1):76. https://doi.org/10.1186/s12955-017-0652-6

    Article  PubMed  PubMed Central  Google Scholar 

  38. Bonin-Guillaume S, Durand AC, Yahi F, Curiel-Berruyer M, Lacroix O, Cretel E, Alazia M, Sambuc R, Gentile S (2015) Predictive factors for early unplanned rehospitalization of older adults after an ED visit: role of the caregiver burden. Aging Clin Exp Res 27(6):883–891. https://doi.org/10.1007/s40520-015-0347-y

    Article  PubMed  Google Scholar 

  39. Burke T, Galvin M, Pinto-Grau M, Lonergan K, Madden C, Mays I, Carney S, Hardiman O, Pender N (2017) Caregivers of patients with amyotrophic lateral sclerosis: investigating quality of life, caregiver burden, service engagement, and patient survival. J Neurol 264(5):898–904. https://doi.org/10.1007/s00415-017-8448-5

    Article  PubMed  Google Scholar 

  40. Dionne-Odom JN, Hull JG, Martin MY, Lyons KD, Prescott AT, Tosteson T, Li Z, Akyar I, Raju D, Bakitas MA (2016) Associations between advanced cancer patients’ survival and family caregiver presence and burden. Cancer Med 5(5):853–862. https://doi.org/10.1002/cam4.653

    Article  PubMed  PubMed Central  Google Scholar 

  41. Boele FW, Given CW, Given BA, Donovan HS, Schulz R, Weimer JM, Drappatz J, Lieberman FS, Sherwood PR (2017) Family caregivers’ level of mastery predicts survival of patients with glioblastoma: a preliminary report. Cancer 123(5):832–840. https://doi.org/10.1002/cncr.30428

    Article  CAS  PubMed  Google Scholar 

  42. Litzelman K, Kent EE, Mollica M, Rowland JH (2016) How does caregiver well-being relate to perceived quality of care in Patients with cancer? Exploring associations and pathways. J Clin Oncol 34(29):3554–3561. https://doi.org/10.1200/jco.2016.67.3434

    Article  PubMed  PubMed Central  Google Scholar 

  43. Sklenarova H, Krumpelmann A, Haun MW, Friederich HC, Huber J, Thomas M et al (2015) When do we need to care about the caregiver? Supportive care needs, anxiety, and depression among informal caregivers of patients with cancer and cancer survivors. Cancer 121(9):1513–1519. https://doi.org/10.1002/cncr.29223

    Article  PubMed  Google Scholar 

  44. Coughlin J (2010) Estimating the impact of caregiving and employment on well-being. Center for Health Research, Healthways, Incorporated

  45. Bevans M, Sternberg EM (2012) Caregiving burden, stress, and health effects among family caregivers of adult cancer patients. JAMA 307(4):398–403. https://doi.org/10.1001/jama.2012.29

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  46. Lambert SD, Harrison JD, Smith E, Bonevski B, Carey M, Lawsin C, Paul C, Girgis A (2012) The unmet needs of partners and caregivers of adults diagnosed with cancer: a systematic review. BMJ Support Palliat Care 2(3):224–230. https://doi.org/10.1136/bmjspcare-2012-000226

    Article  PubMed  Google Scholar 

  47. Shaw J, Harrison J, Young J, Butow P, Sandroussi C, Martin D, Solomon M (2013) Coping with newly diagnosed upper gastrointestinal cancer: a longitudinal qualitative study of family caregivers’ role perception and supportive care needs. Support Care Cancer 21(3):749–756. https://doi.org/10.1007/s00520-012-1575-8

    Article  PubMed  Google Scholar 

Download references

Funding

This work was supported by a grant from the Korea Health Technology R&D Project through the Korea Health Industry Development Institute (KHIDI), funded by the Ministry of Health and Welfare, Republic of Korea (grant number: HC15C1391). The funders had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.

Author information

Authors and Affiliations

  1. Department of Family Medicine, Seoul National University Hospital, Seoul, South Korea

    EunKyo Kang & Young Ho Yun

  2. Institute for Public Health and Medical Service, Seoul National University Hospital, Seoul, South Korea

    EunKyo Kang

  3. Department of Internal Medicine, Seoul National University Hospital, Seoul, South Korea

    Bhumsuk Keam & Shin Hye Yoo

  4. Department of Internal Medicine, Chonbuk National University Medical School, Jeonju, South Korea

    Na-Ri Lee

  5. Department of Internal Medicine, Gyeongsang University Hospital, Jinju, South Korea

    Jung Hun Kang

  6. Department of Internal Medicine, Seoul National University Bundang Hospital, Seoul National University College of Medicine, Seongnam, South Korea

    Yu Jung Kim

  7. Department of Internal Medicine, Chonnam National University Medical School, Gwangju, South Korea

    Hyun-Jeong Shim

  8. Department of Oncology, Asan Medical Center, University of Ulsan College of Medicine, Seoul, South Korea

    Kyung Hae Jung

  9. Department of Hematology and Oncology, Ulsan University Hospital, Ulsan University College of Medicine, Ulsan, South Korea

    Su-Jin Koh

  10. Internal Medicine, Chungnam National University College of Medicine, Chungnam, South Korea

    Hyewon Ryu

  11. Department of Medical Informatics, Seoul National University College of Medicine, 103 Daehak-ro, Jongno-gu, Seoul, South Korea

    Jihye Lee, Jiyeon Choo & Young Ho Yun

Authors
  1. EunKyo Kang
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Bhumsuk Keam
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Na-Ri Lee
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Jung Hun Kang
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Yu Jung Kim
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Hyun-Jeong Shim
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. Kyung Hae Jung
    View author publications

    You can also search for this author in PubMed Google Scholar

  8. Su-Jin Koh
    View author publications

    You can also search for this author in PubMed Google Scholar

  9. Hyewon Ryu
    View author publications

    You can also search for this author in PubMed Google Scholar

  10. Jihye Lee
    View author publications

    You can also search for this author in PubMed Google Scholar

  11. Jiyeon Choo
    View author publications

    You can also search for this author in PubMed Google Scholar

  12. Shin Hye Yoo
    View author publications

    You can also search for this author in PubMed Google Scholar

  13. Young Ho Yun
    View author publications

    You can also search for this author in PubMed Google Scholar

Contributions

All authors contributed to the study conception and design. Material preparation and data acquisition were performed by Bhumsuk Keam, Na-Ri Lee, Jung Hun Kang, Yu Jung Kim, Hyun-Jeong Shim, Kyung Hae Jung, Su-Jin Koh, Hyewon Ryu, Jihye Lee, Jiyeon Choo, Shin Hye Yoo, and Young Ho Yun. Statistical analysis was performed by EunKyo Kang and Young Ho Yun. Interpretation of data and analysis were done by EunKyo Kang, Young Ho Yun, Jihye Lee, and Jiyeon Choo. The first draft of the manuscript was written by EunKyo Kang and Young Ho Yun. All authors critically revised the manuscript. All authors read and approved the final version for publication.

Corresponding author

Correspondence to Young Ho Yun.

Ethics declarations

Conflict of interest

The authors declare that they have no conflict of interest.

Ethical approval

All procedures executed in this study were performed in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Declaration of Helsinki and its later amendments or comparable ethical standards. The written informed consent forms and the study were approved by the institutional review board at each hospital (IRB No. 1602-142-745). Informed consent was obtained from all participants in this study.

Additional information

Publisher’s note

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

Appendix

Appendix

Fig. 5
figure 5

Least square means of patients’ existential well-being (McGill Quality of Life Questionnaire) based on family caregivers’ and patients’ awareness of the prognosis, at all three time points

Full size image

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Kang, E., Keam, B., Lee, NR. et al. Impact of family caregivers’ awareness of the prognosis on their quality of life/depression and those of patients with advanced cancer: a prospective cohort study. Support Care Cancer 29, 397–407 (2021). https://doi.org/10.1007/s00520-020-05489-8

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s00520-020-05489-8

Keywords

Search

Navigation