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Predictors of the Extent of Agreement for Quality of Life Assessments Between Terminally Ill Cancer Patients and their Primary Family Caregivers in Taiwan

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Abstract

The use of family caregivers to report patients’ dying experiences has been suggested as a way of resolving the problem of non-response bias and missing data in end-of-life research. There is a dearth of information in the literature about the predictors of the extent of agreement for quality of life (QOL) assessments between patients and family informants outside of Western countries. In addition, to date there has been little progress made in deciphering meaningful influencing factors on the levels of agreement between patient and family QOL assessments. The purpose of this study was to identify the impact of the demographics and disease characteristics of patients and families, relationships of the patient to family caregiver, and caregiving burden on the extent of agreement for QOL assessments between Taiwanese terminally ill cancer patients and their family caregivers.

Results from assessments by 114 dyads of Taiwanese terminally ill cancer patients and their family caregivers indicated that the extent of agreement between patient and family assessments of patient QOL was negatively influenced by the caregiving burden (amount of care needed and the impact of caregiving on caregiver’s health), positively influenced by the patient’s poorer health status, and there were a mixed effect of the demographics and the relationship between the patient and the family. Providing clinical care tailored at empowering families and aimed at reducing their unmet caregiving needs may improve family caregivers’ abilities to assess patient QOL sensitively.

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References

  1. MJ Field C Cassell (Eds) (1997) Approach Death: Improving Care at the End of Life National Academy Press Washington, DC

    Google Scholar 

  2. SR Cohen BM Mount (1992) ArticleTitleQuality of life in terminal illness: Defining and measuring subjective well-being in the dying J Palliat Care 8 IssueID3 40–45 Occurrence Handle1:STN:280:ByyD2MfhtFQ%3D Occurrence Handle1279149

    CAS  PubMed  Google Scholar 

  3. CM Moinpour (1997) ArticleTitleDo quality of life assessments make a difference in the evaluation of cancer treatment? Control Clin Trials 18 311–317 Occurrence Handle1:STN:280:ByiH3c7is1A%3D Occurrence Handle9257070

    CAS  PubMed  Google Scholar 

  4. DF Cella DS Tulsky (1993) ArticleTitleQuality of life in cancer: Definition, purpose, and method of measurement Cancer Invest 11 327–336 Occurrence Handle1:STN:280:ByyB2M7jslA%3D Occurrence Handle8485655

    CAS  PubMed  Google Scholar 

  5. MAG Sprangers NK Aaronson (1992) ArticleTitleThe role of health care providers and significant others in evaluating the quality of life of patients with chronic disease: A review J Clin Epidemiol 45 743–760 Occurrence Handle10.1016/0895-4356(92)90052-O Occurrence Handle1:STN:280:By2A3Mjpslc%3D Occurrence Handle1619454

    Article  CAS  PubMed  Google Scholar 

  6. GC Rinck GAM Bos Particlevan den J Kleijnen et al. (1997) ArticleTitleMethodologic issues in effectiveness research on palliative cancer care: A systematic review J Clin Oncol 15 1697–1707 Occurrence Handle1:STN:280:ByiA3snmt1A%3D Occurrence Handle9193371

    CAS  PubMed  Google Scholar 

  7. F Fowler KM Coppola JM Teno (1999) ArticleTitleMethodological challenges for measuring quality of care at the end of life J Pain Symptom Manage 17 114–119 Occurrence Handle10069151

    PubMed  Google Scholar 

  8. MM Lobchuk LF Denger (2002) ArticleTitlePatients with cancer and next-of-kin response comparability on physical and psychological symptom well-being: Trends and measurement issues Cancer Nurs 25 358–374 Occurrence Handle12394563

    PubMed  Google Scholar 

  9. CJ McPherson JM Addington-Hall (2003) ArticleTitleJudging the quality of care at the end of life: Can proxies providing reliable information Soc Sci Med 56 95–109 Occurrence Handle10.1016/S0277-9536(02)00011-4 Occurrence Handle1:STN:280:DC%2BD38nnsFygsA%3D%3D Occurrence Handle12435554

    Article  CAS  PubMed  Google Scholar 

  10. KCA Sneeuw MAG Sprangers NK Aaronson (2002) ArticleTitleThe role of health care providers and significant others in evaluating the quality of life of patients with chronic disease J Clin Epidemiol 55 1130–1143 Occurrence Handle10.1016/S0895-4356(02)00479-1 Occurrence Handle12507678

    Article  PubMed  Google Scholar 

  11. ST Tang R McCorke (2002) ArticleTitleUse of family proxies in quality of life research for cancer patients at the end of life: A literature review Cancer Invest 20 1086–1104 Occurrence Handle10.1081/CNV-120005928 Occurrence Handle12449742

    Article  PubMed  Google Scholar 

  12. MJ Forjaz CA Guarnaccia (1999) ArticleTitleHematological cancer patients’ quality of life: Self verusu intimate or non-intimate confident reports Psycho Oncol 8 546–552 Occurrence Handle1:STN:280:DC%2BD3c%2Fns1Oksg%3D%3D

    CAS  Google Scholar 

  13. LJ Kristjanson S Nikoletti D Porock et al. (1998) ArticleTitleCongruence between patients’ and family caregivers’ perceptions of symptom distress in patients with terminal cancer J Palliat Care 14 IssueID3 24–32 Occurrence Handle1:STN:280:DyaK1cvktlymtQ%3D%3D Occurrence Handle9770918

    CAS  PubMed  Google Scholar 

  14. KCA Sneeuw NK Aaronson MAG Sprangers et al. (1998) ArticleTitleComparison of patient and proxy EORTC QOL-C30 ratings in assessing the quality of life of cancer patients J Clin Epidemiol 51 617–631 Occurrence Handle10.1016/S0895-4356(98)00040-7 Occurrence Handle1:STN:280:DyaK1czjslChtA%3D%3D Occurrence Handle9674669

    Article  CAS  PubMed  Google Scholar 

  15. C Miaskowski EF Zimmer KM Barrett SL Dibble M Wallhagen (1997) ArticleTitleDifferences in patients’ and family caregivers’ perceptions of the pain experience influence patient and caregiver outcomes Pain 72 217–226 Occurrence Handle10.1016/S0304-3959(97)00037-7 Occurrence Handle1:STN:280:ByiH3Mjktlc%3D Occurrence Handle9272806

    Article  CAS  PubMed  Google Scholar 

  16. SR Cohen BM Mount JJN Tomas LF Mount (1996) ArticleTitleExistential well-being is an important determinant of quality of life Cancer 77 576–586 Occurrence Handle10.1002/(SICI)1097-0142(19960201)77:3<576::AID-CNCR22>3.0.CO;2-0 Occurrence Handle1:STN:280:BymB3s%2FgtFI%3D Occurrence Handle8630968

    Article  CAS  PubMed  Google Scholar 

  17. R McCorkle K Young (1978) ArticleTitleDevelopment of a symptom distress scale Cancer Nurs 1 373–378 Occurrence Handle1:STN:280:CSaD383otVY%3D Occurrence Handle250445

    CAS  PubMed  Google Scholar 

  18. JQ Benoliel R McCorkle K Young (1980) ArticleTitleDevelopment of a social dependency scale Res Nurs Health 3 3–10 Occurrence Handle1:STN:280:Bi%2BB3Mzgslc%3D Occurrence Handle6901191

    CAS  PubMed  Google Scholar 

  19. S Tang J Dixon (2002) ArticleTitleInstrument translation and evaluation of equivalence and psychometric properties: The Chinese Sense of Coherence Scale J Nurs Measure 10 59–76

    Google Scholar 

  20. SR Cohen BM Mount E Bruera et al. (1997) ArticleTitleValidity of the McGill Quality of Life Questionnaire in the palliative care setting: A multi-center Canadian study demonstrating the importance of the existential domain Palliat Med 11 3–20 Occurrence Handle9068681

    PubMed  Google Scholar 

  21. R McCorkle ME Cooley JA Shea (1998) A User’s Manual for the Symptom Distress Scale Yale University School of Nursing New Haven

    Google Scholar 

  22. A Barsevuck J Pasacreta A Orsi (1995) ArticleTitlePsychological distress and functional dependency in colorectal cancer patients Cancer Pract 3 IssueID2 105–110

    Google Scholar 

  23. MM Lobchuk LF Degner (2002) ArticleTitleSymptom experiences: Perceptual accuracy between advanced-stage cancer patients and family caregivers in the home care setting J Clinl Oncol 20 3495–3507

    Google Scholar 

  24. CW Given B Given M Stommel et al. (1992) ArticleTitleThe Caregiver Reaction Assessment (CRA) for caregivers to persons with chronic physical and mental impairments Res Nurs Health 15 271–283 Occurrence Handle1:STN:280:By2A2Mjps1A%3D Occurrence Handle1386680

    CAS  PubMed  Google Scholar 

  25. C Nijboer M Triemstra R Tempelaar et al. (1999) ArticleTitleMeasuring both negative and positive relations to giving care to cancer patients: Psychometric qualities of the cancer reaction assessment (CRA) Soc Sci Med 48 1259–1269 Occurrence Handle10.1016/S0277-9536(98)00426-2 Occurrence Handle1:STN:280:DyaK1M3jsFCgsg%3D%3D Occurrence Handle10220024

    Article  CAS  PubMed  Google Scholar 

  26. EJ Emanuel DL Fairclough J Slutsman et al. (1999) ArticleTitleAssistance from family members, friends, paid care givers and volunteers in the care of terminally ill patients New Eng J Med 341 956–963 Occurrence Handle1:STN:280:DyaK1Mvht1Skuw%3D%3D Occurrence Handle10498492

    CAS  PubMed  Google Scholar 

  27. DG Kleinbaum LL Kupper KE Muller A Nizam (1998) Applied Regression Analysis and Other Multivariate Methods EditionNumber3 CA Brooks/Cole Publishing Company Pacific Grove 216–227

    Google Scholar 

  28. KCA Sneeuw NK Aaronson D Osoba et al. (1997) ArticleTitleThe use of significant others as proxy raters of the quality of life of patients with brain cancer Med Care 35 490–506 Occurrence Handle10.1097/00005650-199705000-00006 Occurrence Handle1:STN:280:ByiB1crgs1A%3D Occurrence Handle9140337

    Article  CAS  PubMed  Google Scholar 

  29. KCA Sneeuw NK Aaronson MAG Sprangers et al. (1999) ArticleTitleEvaluating the quality of life of cancer patients: Assessments by patients, significant others, physicians and nurses Br J Cancer 81 87–94 Occurrence Handle10.1038/sj.bjc.6690655 Occurrence Handle1:STN:280:DyaK1MvhsFGmug%3D%3D Occurrence Handle10487617

    Article  CAS  PubMed  Google Scholar 

  30. SC McMillan (1996) ArticleTitleThe quality of life of patients with cancer receiving hospice care Oncol Nurs Forum 23 1221–1228 Occurrence Handle1:STN:280:ByiD3sjkt1c%3D Occurrence Handle8883070

    CAS  PubMed  Google Scholar 

  31. MM Lobchuk L Kristjanson (1997) ArticleTitlePerceptions of symptom distress in lung cancer patients: II Behavioral assessment by primary family caregivers J Pain Symptom Manage 14 147–156 Occurrence Handle1:STN:280:ByiH3sjgsVA%3D Occurrence Handle9291701

    CAS  PubMed  Google Scholar 

  32. LJ Blackhall ST Murphy G Frank et al. (1995) ArticleTitleEthnicity and attitudes toward patient automony JAMA 274 820–825 Occurrence Handle10.1001/jama.274.10.820 Occurrence Handle1:STN:280:ByqA2sbhsVw%3D Occurrence Handle7650806

    Article  CAS  PubMed  Google Scholar 

  33. SC McMillan LE Moody (2003) ArticleTitleHospice patient and caregiver congruence in reporting patients’ symptom intensity Cancer Nurs 26 113–118 Occurrence Handle12660560

    PubMed  Google Scholar 

  34. EJ Emanuel DL Fairclough J Slutsman et al. (1999) ArticleTitleAssistance from family members, friends, paid care givers, and volunteers in the care of terminally ill patients New Eng J Med 341 956–963 Occurrence Handle1:STN:280:DyaK1Mvht1Skuw%3D%3D Occurrence Handle10498492

    CAS  PubMed  Google Scholar 

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  1. Graduate School of Nursing, Chang Gung University, 259 Wen-Hwa 1st Road, Kwei-Shan, Tao-Yuan, Taiwan, 333, R.O.C

    Siew Tzuh Tang

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  1. Siew Tzuh Tang
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Tang, S.T. Predictors of the Extent of Agreement for Quality of Life Assessments Between Terminally Ill Cancer Patients and their Primary Family Caregivers in Taiwan. Qual Life Res 15, 391–404 (2006). https://doi.org/10.1007/s11136-005-2158-7

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  • DOI: https://doi.org/10.1007/s11136-005-2158-7

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