Journal of Pain and Symptom Management
Volume 39, Issue 1 , Pages 23-32 , January 2010

Late-Stage HIV/AIDS Patients' and Their Familial Caregivers' Agreement on the Palliative Care Outcome Scale

  • Rachel Krug, MA

      Affiliations

    • Mailman School of Public Health, Columbia University, New York, New York, USA
  • ,
  • Daniel Karus, MS

      Affiliations

    • Mailman School of Public Health, Columbia University, New York, New York, USA
  • ,
  • Peter A. Selwyn, MD, MPH

      Affiliations

    • Montefiore Medical Center, Albert Einstein College of Medicine, Bronx, New York, USA
  • ,
  • Victoria H. Raveis, PhD

      Affiliations

    • Mailman School of Public Health, Columbia University, New York, New York, USA
    • Corresponding Author InformationAddress correspondence to: Victoria H. Raveis, PhD, Center for the Psychosocial Study of Health and Illness, Mailman School of Public Health, Columbia University, New York, NY 10032, USA.

,Accepted 14 May 2009.

References 

  1. Tang S, 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
  2. Steinhauser K. Measuring end-of-life care outcomes prospectively. J Palliat Med. 2005;8(S1):S30–S41
  3. Huber DL, McClelland E. Patient preferences and discharge planning transitions. J Prof Nurs. 2003;19(3):204–210
  4. McPherson CJ, Addington-Hall JM. Judging the quality of care at the end of life: can proxies provide reliable information?. Soc Sci Med. 2003;56(1):95–109
  5. Sprangers MA, 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(7):743–760
  6. Fowler FJ, Coppola KM, Teno JM. Methodological challenges for measuring quality of care at the end of life. J Pain Symptom Manage. 1999;17(2):114–119
  7. Shega JW, Hougham GW, Stocking CB, Cox-Hayley D, Sachs GA. Pain in community-dwelling persons with dementia: frequency, intensity, and congruence between patient and caregiver report. J Pain Symptom Manage. 2004;28(6):585–592
  8. Martin-Cook K, Davis BA, Hynan LS, Weiner MF. A randomized, controlled study of an Alzheimer's caregiver skills training program. Am J Alzheimers Dis Other Demen. 2005;20(4):204–210
  9. Brown PD, Decker PA, Rummans TA, et al. A prospective study of quality of life in adults with newly diagnosed high-grade gliomas: comparison of patient and caregiver ratings of quality of life. Am J Clin Oncol. 2008;31(2):163–168
  10. Lobchuk MM, Kristjanson L, Degner L, Blood P, Sloan JA. Perceptions of symptom distress in lung cancer patients: I. Congruence between patients and primary family caregivers. J Pain Symptom Manage. 1997;14(3):136–146
  11. Lobchuk MM, McClement SE, Daenick PJ, Shay C, Elands H. Asking the right question of informal caregivers about patient symptom experiences: multiple proxy perspectives and reducing interrater gap. J Pain Symptom Manage. 2007;33(2):130–145
  12. Lobchuk MM, Degner LF, Chateau D, Hewitt D. Promoting enhanced patient and family caregiver congruence on lung cancer symptom experiences. Oncol Nurs Forum. 2006;33(2):273–282
  13. Riley-Soucet C. Beliefs about the controllability of pain: congruence between older adults with cancer and their family caregivers. J Fam Nurs. 2005;11(3):225–241
  14. Burns CM, Dixon T, Smith WT, Craft PS. Patients with advanced cancer and family caregivers' knowledge of health and community services: a longitudinal study. Health Soc Care Community. 2004;12(6):488–503
  15. McMillan SC, Moody LE. Hospice patient and caregiver congruence in reporting patients' symptom intensity. Cancer Nurs. 2003;26(2):113–118
  16. 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(1):70–82
  17. Tu MS, Chiou CP. Perceptual consistency of pain and quality of life between hospice cancer patients and family caregivers: a pilot study. Int J Clin Pract. 2007;61(10):1686–1691
  18. Wennman-Larsen A, Tishelman C, Wengstrom Y, Gustavsson P. Factors influencing agreement in symptom ratings by lung cancer patients and their significant others. J Pain Symptom Manage. 2007;33(2):146–155
  19. Sneeuw K, Aaronson NK, Sprangers MA, et al. Value of caregiver ratings in evaluating the quality of life of patients with cancer. J Clin Oncol. 1997;15:1206–1217
  20. Addington-Hall J, Kalra L. Who should measure quality of life?. Br Med J. 2001;322:1417–1420
  21. George L. Research design in end-of-life research. Gerontologist. 2002;42:86–98
  22. Snow AL, Cook KF, Lin P, Morgan RO, Magaziner J. Proxies and other external raters: methodological considerations. Health Serv Res. 2005;40:1676–1693
  23. Hung S, Pickard AS, Witt W, Lambert BL. Pain and depression in caregivers affected their perception of pain in stroke patients. J Clin Epidemiol. 2007;60:963–970
  24. Long K, Sudha S, Mutran EJ. Elder-proxy agreement concerning the functional status and medical history of the older person: the impact of caregiver burden and depressive symptomatology. J Am Geriatr Soc. 1998;46:1103–1111
  25. Higginson IJ, Gao W. Caregiver assessment of patients with advanced cancer: concordance with patients, effect of burden and positivity. Health Qual Life Outcomes. 2008;6:42;Available from http://www.hqlo.com/content/pdf/1477-7525-6-42.pdfAccessed April 23, 2009
  26. Deschler DG, Walsh KA, Friedman S, Hayden RE. Quality of life assessment in patients undergoing head and neck surgery as evaluated by lay caregivers. Laryngoscope. 1999;109(1):42–46
  27. Selwyn PA. Palliative care for patients with human immunodeficiency virus/acquired immune deficiency syndrome. J Palliat Med. 2005;8:1248–1268
  28. Karus D, Raveis VH, Marconi K, et al. Service needs of patients with advanced HIV disease: a comparison of client and staff reports at three palliative care projects. AIDS Patient Care STDS. 2004;18(3):145–158
  29. Karus D, Raveis VH, Marconi K, et al. Mental health status of clients from three HIV/AIDS palliative care projects. Palliat Support Care. 2004;2:125–158
  30. 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
  31. Landis JR, Koch GG. The measurement of observer agreement for categorical data. Biometrics. 1977;33:159–174
  32. Sim J, Wright CC. The kappa statistic in reliability studies: use, interpretation, and sample size requirements. Phys Ther. 2005;85(3):257–268
  33. House A, House B, Campbell M. Measures of inter-observer agreement: calculation formulas and distribution effects. Behav Assess. 1981;3:37–57
  34. Hansson L, Björkman T, Svensson B. The assessment of needs in psychiatric patients. Interrater-reliability of the Swedish version of the Camberwell Assessment of Needs instrument and results from a cross-sectional study. Acta Psychiatr Scand. 1995;92:285–293
  35. Sneeuw K. Comparison of patient and proxy EORTC QLQ-C30 ratings in assessing the quality of life of cancer patients. J Clin Epidemiol. 1998;51(7):617–631
  36. Raveis VH, Pretter S. Existential plight of adult daughters following their mother's breast cancer diagnosis. Psychooncology. 2005;14:49–60

 This research was supported by Grant No. RO1-NR008343 from the National Institute of Nursing Research (V. H. Raveis, Principal Investigator).

PII: S0885-3924(09)00708-8

doi: 10.1016/j.jpainsymman.2009.05.010

Journal of Pain and Symptom Management
Volume 39, Issue 1 , Pages 23-32 , January 2010