Burdens, Needs and Satisfaction of Terminal Cancer Patients and their Caregivers

  • Chang, Yoon-Jung (National Cancer Control institute and Hospital, National Cancer Center) ;
  • Kwon, Yong Chol (National Cancer Control institute and Hospital, National Cancer Center) ;
  • Lee, Woo Jin (Cancer Research Institute and Hospital, National Cancer Center) ;
  • Do, Young Rok (Division of Hematooncology, Department of Internal Medicine, Dongsan Medical Center, Keimyung University School of Medicine) ;
  • Lee, Keun Seok (Cancer Research Institute and Hospital, National Cancer Center) ;
  • Kim, Heung Tae (Cancer Research Institute and Hospital, National Cancer Center) ;
  • Park, Sook Ryun (Cancer Research Institute and Hospital, National Cancer Center) ;
  • Hong, Young Seon (Department of Medicine, Kangnam St. Mary's Hospital, the Catholic University of Korea) ;
  • Chung, Ik-Joo (Department of Internal Medicine, Chonnam National University Hwasun Hospital) ;
  • Yun, Young Ho (Cancer Research Institute and Hospital, National Cancer Center)
  • Published : 2013.01.31


Objectives: Terminal cancer patients and their caregivers often experience traumatic stress and need many types of assistance. In the present study we interviewed terminally ill cancer patients and caregivers to determine how much burden they experienced and to find out what factors are most important for satisfaction. Design: We constructed a questionnaire including overall care burden and needs experienced, and administered it to 659 terminal cancer patients and 659 important caregivers at 11 university hospitals and 1 national cancer center in Korea. Results: Finally, 481 terminal cancer patients and 381 caregivers completed the questionnaire. Care burden was not insubstantial in both and the caregiver group felt more burden than the patient group (P<0.001). While the patient group needed financial support most (39.0%), the caregiver group placed greatest emphasis on discussion about further treatment plans (44.8%). Stepwise multiple logistic regression analyses showed that in the patient group, patient's health status (OR, 2.03; 95%CI, 1.16-3.56) and burden (OR, 2.82; 95%CI, 1.76-4.50) influenced satisfaction about overall care, while in the caregiver group, high education level (OR, 1.84; 95%CI, 1.76-4.50), burden (OR, 2.94; 95%CI, 1.75-4.93) and good family function (OR, 1.94; 95%CI, 1.24-3.04) were important. Conclusions: Our study showed that burden was great in both terminal cancer patients and their caregivers and was perceived to be more severe by caregivers. Our study also showed that burden was the factor most predicting satisfaction about overall care in both groups.


Supported by : National Cancer Center


  1. Yang BH, Parkin DM, Cai L, et al (2004). Cancer burden and trends in the Asian Pacific Rim region. Asian Pac J Cancer Prev, 5, 96-117.
  2. Zeppetella G, Messina J, Xie F, et al (2010). Consistent and clinically relevant effects with fentanyl buccal tablet in the treatment of patients receiving maintenance opioid therapy and experiencing cancer-related breakthrough pain. Pain Pract, 10, 287-93.
  3. Zhou G, Stoltzfus JC, Houldin AD, et al (2010). Knowledge, attitudes, and practice behaviors of oncology advanced practice nurses regarding advanced care planning for patients with cancer. Oncol Nurs Forum, 37, E400-10.
  4. Wang YM, Guo HQ (2012). Follow-up study of survival of patients with advanced cancer in a hospice setting. Asian Pac J Cancer Prev, 13, 3357-60.
  5. Xian Y, Holloway RG, Noyes K, et al (2011). Racial differences in mortality among patients with acute ischemic stroke: an observational study. Ann Intern Med, 154, 152-9.
  6. Gilbertson-White S, Aouizerat BE, Jahan T, et al (2011). A review of the literature on multiple symptoms, their predictors, and associated outcomes in patients with advanced cancer. Palliat Support Care, 9, 81-102.
  7. Kallen MA, Yang D, Haas N (2012). A technical solution to improving palliative and hospice care. Support Care Cancer, 20, 167-74.
  8. Kiely DK, Givens JL, Shaffer ML, et al (2010). Hospice use and outcomes in nursing home residents with advanced dementia. J Am Geriatr Soc, 58, 2284-91.
  9. Kimman M, Norman R, Jan S, et al (2012). The burden of cancer in member countries of the Association of Southeast Asian Nations (ASEAN). Asian Pac J Cancer Prev, 13, 411-20.
  10. Konski A, Bhargavan M, Owen J, et al (2011). Feasibility of economic analysis of Radiation Therapy Oncology Group (RTOG) 91-11 using Medicare data. Int J Radiat Oncol Biol Phys, 79, 436-42.
  11. Legler A, Bradley EH, Carlson MD (2011). The effect of comorbidity burden on health care utilization for patients with cancer using hospice. J Palliat Med, 14, 751-6.
  12. Loiselle CG, Sterling MM (2012). Views on death and dying among health care workers in an Indian cancer care hospice: balancing individual and collective perspectives. Palliat Med, 26, 250-6.
  13. McLaughlin D, Hasson F, Kernohan WG, et al (2011). Living and coping with Parkinson's disease: perceptions of informal carers. Palliat Med, 25, 177-82.
  14. Minnock P, Kirwan J, Veale D, et al (2010). Fatigue is an independent outcome measure and is sensitive to change in patients with psoriatic arthritis. Clin Exp Rheumatol, 28, 401-4.
  15. Nelson JE, Gay EB, Berman AR, et al (2011). Patients rate physician communication about lung cancer. Cancer, 117, 5212-20.
  16. Rheims S, Perucca E, Cucherat M, et al (2011). Factors determining response to antiepileptic drugs in randomized controlled trials. A systematic review and meta-analysis. Epilepsia, 52, 219-33.
  17. Rittenberger JC, Raina K, Holm MB, et al (2011). Association between Cerebral Performance Category, Modified Rankin Scale, and discharge disposition after cardiac arrest. Resuscitation, 82, 1036-40.
  18. Sekeres MA, Gundacker H, Lancet J, et al (2011). A phase 2 study of lenalidomide monotherapy in patients with deletion 5q acute myeloid leukemia: Southwest Oncology Group Study S0605. Blood, 118, 523-8.
  19. Smith TJ, Hillner BE (2010). Explaining marginal benefits to patients, when "marginal" means additional but not necessarily small. Clin Cancer Res, 16, 5981-6.
  20. Snowdon C, Harvey SE, Brocklehurst P, et al (2010). The BRACELET Study: surveys of mortality in UK neonatal and paediatric intensive care trials. Trials, 11, 65.
  21. Stevens E, Martin CR,White CA (2011). The outcomes of palliative care day services: a systematic review. Palliat Med, 25, 153-69.
  22. Ugur O, Fadiloglu C (2010). "Caregiver Strain Index" validity and reliability in Turkish society. Asian Pac J Cancer Prev, 11, 1669-75.
  23. Abernethy AP, Wheeler JL, Bull J (2011). Development of a health information technology-based data system in community-based hospice and palliative care. Am J Prev Med, 40, S217-24.
  24. Angelo M, Ruchalski C, Sproge BJ (2011). An approach to diabetes mellitus in hospice and palliative medicine. J Palliat Med, 14, 83-7.
  25. Bekelman DB, Nowels CT, Allen LA, et al (2011). Outpatient palliative care for chronic heart failure: a case series. J Palliat Med, 14, 815-21.
  26. Bell CL, Kuriya M, Fischberg D (2011). Hospice referrals and code status: outcomes of inpatient palliative care consultations among Asian Americans and Pacific Islanders with cancer. J Pain Symptom Manage, 42, 557-64.
  27. Bergen-Jackson K, Sanders S, Herr K, et al (2009). Determining Community Provider Practices in Hospices: The Challenges of Documentation. J Hosp Palliat Nurs, 11, 334-41.
  28. Capewell C, Gregory W, Closs S, et al (2010). Brief DVDbased educational intervention for patients with cancer pain: feasibility study. Palliat Med, 24, 616-22.
  29. Casadio M, Biasco G, Abernethy A, et al (2010). The National Tumor Association Foundation (ANT): A 30 year old model of home palliative care. BMC Palliat Care, 9, 12.
  30. Chhabra PT, Rattinger GB, Dutcher SK, et al (2012). Medication reconciliation during the transition to and from long-term care settings: a systematic review. Res Social Adm Pharm, 8, 60-75.
  31. Choi JY, Shin DW, Kang J, et al (2012). Variations in process and outcome in inpatient palliative care services in Korea. Support Care Cancer, 20, 539-47.
  32. Cora A, Partinico M, Munafo M, et al (2012). Health risk factors in caregivers of terminal cancer patients: a pilot study. Cancer Nurs, 35, 38-47.
  33. Dy SM, Roy J, Ott GE, et al (2011). Tell Us: a Web-based tool for improving communication among patients, families, and providers in hospice and palliative care through systematic data specification, collection, and use. J Pain Symptom Manage, 42, 526-34.

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