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Health and Quality of Life Outcomes
Published in: Health and Quality of Life Outcomes 1/2008

Open Access 01-12-2008 | Research

Caregiver assessment of patients with advanced cancer: concordance with patients, effect of burden and positivity

Authors: Irene J Higginson, Wei Gao

Published in: Health and Quality of Life Outcomes | Issue 1/2008

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Abstract

Background

Clinicians and researchers often have to rely on information from caregivers to assess patients with advanced cancer. This study aims to assess the validity (using patients' assessment as the gold standard) of caregiver reports of patient concerns and the roles of caregiver burden and positivity.

Methods

A total of 64 advanced cancer patient and informal caregiver dyads were recruited from regional palliative care services and interviewed. Patients' outcomes were assessed with both the patient and the caregiver version of the Palliative Outcome Scale (POS); caregiver burden and positivity were collected with the Zarit Burden interview (ZBI) and three questions on achievements and relationships. The agreement between patient- and caregiver-rated POS was measured with weighted kappa statistics. The roles of caregiver burden and positivity in POS agreement were studied with logistic regression controlling for potential confounders; adjusted odds ratios were estimated from the models.

Results

Agreement was substantial for pain, moderate for four items, fair for three items and slight for two items. Compared with patients self-ratings, caregivers described more problems with information given and sharing feelings and were less likely to assess the patient felt their life was worthwhile or felt good about themselves. Disagreement for three POS item ratings was significantly associated with higher caregiver burden: "feeling anxious"(OR: 4.5; 95%CI: 1.3 to 15.6), "life worthwhile"(OR: 12.4; 95%CI: 2.9 to 54.3) and "felt good" (OR: 7.7; 95%CI: 2.0 to 29.6). Caregivers with higher positivity scores were more likely to agree patients' rating of "felt good"(OR: 0.3; 95%CI: 0.1–0.9) but at increased risk of disagreeing about patient's "practical problems"(OR: 4.2; 95%CI: 1.1 to 16.6).

Conclusion

Caregiver burden and positivity affect their assessments, especially of psychological patient domains and whether patients assess their life as worthwhile. Awareness of this might help clinicians and researchers better interpret caregiver assessments.
Appendix
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Literature
1.
Solano JP, Gomes B, Higginson IJ: A comparison of symptom prevalence in far advanced cancer, AIDS, heart disease, chronic obstructive pulmonary disease and renal disease. J Pain Symptom Manage 2006, 31: 58–69. 10.1016/j.jpainsymman.2005.06.007CrossRefPubMed
2.
Ingleton C, Faulkner A: Quality assurance in palliative care: some of the problems. Eur J Cancer Care (Engl ) 1995, 4: 38–44. 10.1111/j.1365-2354.1995.tb00051.xCrossRef
3.
Diehr P, Johnson LL: Accounting for missing data in end-of-life research. J Palliat Med 2005, 8 Suppl 1: S50-S57.PubMed
4.
Mittal V, Rosen J, Govind R, Degenholtz H, Shingala S, Hulland S, Rhee Y, Kastango KB, Mulsant BH, Castle N, Rubin FH, Nace D: Perception gap in quality-of-life ratings: an empirical investigation of nursing home residents and caregivers. Gerontologist 2007, 47: 159–168.CrossRefPubMed
5.
Sprangers MAG, Aaronson NK: The role of health care providers and significant others in evaluating the quality of life of patients with chronic disease: a review. J Clin Epidemiol 1992, 45: 743–760. 10.1016/0895-4356(92)90052-OCrossRefPubMed
6.
Tang ST, McCorkle R: Use of family proxies in quality of life research for cancer patients at the end of life: a literature review. Cancer Invest 2002, 20: 1086–1104. 10.1081/CNV-120005928CrossRefPubMed
7.
Torti FM Jr., Gwyther LP, Reed SD, Friedman JY, Schulman KA: A multinational review of recent trends and reports in dementia caregiver burden. Alzheimer Dis Assoc Disord 2004, 18: 99–109. 10.1097/01.wad.0000126902.37908.b2CrossRefPubMed
8.
Kissane DW: The challenge of discrepancies in values among physicians, patients, and family members. Cancer 2004, 100: 1771–1775. 10.1002/cncr.20180CrossRefPubMed
9.
Zarit SH, Robertson SM: Positive dimensions of mental health. Aging Ment Health 2006, 10: 437–438.CrossRefPubMed
10.
Pinquart M, Sorensen S: Associations of stressors and uplifts of caregiving with caregiver burden and depressive mood: a meta-analysis. J Gerontol B Psychol Sci Soc Sci 2003, 58(2):112–128.CrossRef
11.
Schofield HL, Murphy B, Herrman HE, Bloch S, Singh B: Family caregiving: measurement of emotional well-being and various aspects of the caregiving role. Psychol Med 1997, 27: 647–657. 10.1017/S0033291797004820CrossRefPubMed
12.
Reich JW, Zautra AJ, Davis M: Dimensions of affect relationships: Models and their integrative implications. Reviews of General Psychology 2003, 7: 66–83. 10.1037/1089-2680.7.1.66CrossRef
13.
Goodwin DM, Higginson IJ, Myers K, Douglas HR, Normand CE: Effectiveness of palliative day care in improving pain, symptom control, and quality of life. J Pain Symptom Manage 2003, 25: 202–212. 10.1016/S0885-3924(02)00688-7CrossRefPubMed
14.
Higginson IJ, Donaldson N: Relationship between three palliative care outcome scales. Health and Quality of Life Outcomes 2004, 2: 68–75. 10.1186/1477-7525-2-68PubMedCentralCrossRefPubMed
15.
Kind P, Dolan P, Gudex C, Williams A: Variations in population health status: results from a United Kingdom national questionnaire survey. BMJ 1998, 316: 736–741.PubMedCentralCrossRefPubMed
16.
Hearn J, Higginson IJ: Development and validation of a core outcome measure for palliative care: the palliative care outcome scale. Qual Health Care 1999, 8: 219–227.PubMedCentralCrossRefPubMed
17.
Brandt HE, Deliens L, van der Steen JT, Ooms ME, Ribbe MW, van der Wal G: The last days of life of nursing home patients with and without dementia assessed with the Palliative care Outcome Scale. Palliat Med 2005, 19: 334–342. 10.1191/0269216305pm1018oaCrossRefPubMed
18.
Stevens AM, Gwilliam B, A'Hern R, Broadley K, Hardy J: Experience in the use of the palliative care outcome scale. Support Care Cancer 2005, 13: 1027–1034. 10.1007/s00520-005-0815-6CrossRefPubMed
19.
Zarit SH, Reever KE, Bach-Peterson J: Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist 1980, 20: 649–655.CrossRefPubMed
20.
Zarit SH, Orr RD, Zarit JM: The Hidden Victims of Alzheimer's Disease: Families Under Stress. New York, New York University Press; 1985.
21.
Lazarus RS, Folkman S: Stress, Appraisal, and Coping. Springer; 1984.
22.
Lawton MP, Kleban MH, Moss M, Rovine M, Glicksman A: Measuring caregiving appraisal. J Gerontol 1989, 44(3):61–71.CrossRef
23.
Cicchetti DV, Allison T: A New Procedure for Assessing Reliability of Scoring EEG Sleep Recordings. American Journal of EEG Technology 1971, 101–109.
24.
Byrt T, Bishop J, Carlin JB: Bias, prevalence and kappa. J Clin Epidemiol 1993, 46: 423–429. 10.1016/0895-4356(93)90018-VCrossRefPubMed
25.
Landis JR, Koch GG: The measurement of observer agreement for categorical data. Biometrics 1977, 33: 159–174. 10.2307/2529310CrossRefPubMed
26.
27.
Coen RF, O'Boyle CA, Coakley D, Lawlor BA: Individual quality of life factors distinguishing low-burden and high-burden caregivers of dementia patients. Dement Geriatr Cogn Disord 2002, 13(3):164–170. 10.1159/000048648CrossRefPubMed
28.
Resnizky S, Bentur N: Can family caregivers of terminally ill patients be a reliable source of information about the severity of patient symptoms? Am J Hosp Palliat Care 2006, 23: 447–456. 10.1177/1049909106294825CrossRefPubMed
29.
Albinsson L, Strang P: Existential concerns of families of late-stage dementia patients: questions of freedom, choices, isolation, death, and meaning. J Palliat Med 2003, 6: 225–235. 10.1089/109662103764978470CrossRefPubMed
30.
Hunt CK: Concepts in caregiver research. J Nurs Scholarsh 2003, 35: 27–32. 10.1111/j.1547-5069.2003.00027.xCrossRefPubMed
31.
Basch E, Iasonos A, McDonough T, Barz A, Culkin A, Kris MG, Scher HI, Schrag D: Patient versus clinician symptom reporting using the National Cancer Institute Common Terminology Criteria for Adverse Events: results of a questionnaire-based study. Lancet Oncol 2006, 7: 903–909. 10.1016/S1470-2045(06)70910-XCrossRefPubMed
32.
Higginson IJ, McCarthy M: Validity of the support team assessment schedule: do staffs' ratings reflect those made by patients or their families? Palliat Med 1993, 7: 219–228. 10.1177/026921639300700309CrossRefPubMed
33.
McPherson CJ, Wilson KG, Lobchuk MM, Brajtman S: Family caregivers' assessment of symptoms in patients with advanced cancer: concordance with patients and factors affecting accuracy. J Pain Symptom Manage 2008, 35: 70–82. 10.1016/j.jpainsymman.2007.02.038CrossRefPubMed
34.
Siminoff LA, Rose JH, Zhang A, Zyzanski SJ: Measuring discord in treatment decision-making; progress toward development of a cancer communication and decision-making assessment tool. Psychooncology 2006, 15: 528–540. 10.1002/pon.989CrossRefPubMed
35.
Sands LP, Ferreira P, Stewart AL, Brod M, Yaffe K: What explains differences between dementia patients' and their caregivers' ratings of patients' quality of life? Am J Geriatr Psychiatry 2004, 12: 272–280. 10.1176/appi.ajgp.12.3.272CrossRefPubMed
36.
Higginson IJ, Finlay IG, Goodwin DM, Hood K, Edwards AG, Cook A, Douglas HR, Normand CE: Is there evidence that palliative care teams alter end-of-life experiences of patients and their caregivers? J Pain Symptom Manage 2003, 25: 150–168. 10.1016/S0885-3924(02)00599-7CrossRefPubMed
37.
Jansen J, van WJ, van DS, Heeren T, Bensing J: Patient education about treatment in cancer care: an overview of the literature on older patients' needs. Cancer Nurs 2007, 30: 251–260. 10.1097/01.NCC.0000281735.25609.afCrossRefPubMed
Metadata
Title
Caregiver assessment of patients with advanced cancer: concordance with patients, effect of burden and positivity
Authors
Irene J Higginson
Wei Gao
Publication date
01-12-2008
Publisher
BioMed Central
Published in
Health and Quality of Life Outcomes / Issue 1/2008
Electronic ISSN: 1477-7525
DOI
https://doi.org/10.1186/1477-7525-6-42

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