The PEACE project review of clinical instruments for hospice and palliative care

Journal of Palliative Medicine

Volumn 13, Issue 10, 2010, Pages 1253-1260

  Hanson, Laura C ^a   Scheunemann, Leslie P ^a   Zimmerman, Sheryl ^a   Rokoske, Franziska S ^b   Schenck, Anna P ^a,b  

^a IL   (United States)

^b Carolinas Center for Medical Excellence   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

CLINICAL ASSESSMENT TOOL; HEALTH CARE QUALITY; HOSPICE CARE; PALLIATIVE THERAPY; PROGNOSIS; PSYCHOMETRY; PUBLICATION; REVIEW; SCORING SYSTEM;

HOSPICE CARE; HUMANS; PALLIATIVE CARE; PSYCHOMETRICS; QUALITY IMPROVEMENT; TOTAL QUALITY MANAGEMENT;

EID: 78049286768     PISSN: 10966218     EISSN: None     Source Type: Journal    
DOI: 10.1089/jpm.2010.0194     Document Type: Review

References (78)

1. Field MJ, Cassel CK (eds): Approaching Death: Improving Care at the End of Life. Washington, D. C.: National Academy Press, 1997.
2. Lunney JR, Foley KM, Smith TJ, Gelband H: Describing Death in America: What We Need to Know. Washington, D. C.: National Academy Press, 2003.
3. Clinical Practice Guidelines for Quality Palliative Care. 2004. Pittsburgh, PA: National Consensus Project. www.nationalconsensusproject.org (Last accessed August 9, 2009).
4. National Quality Forum: National Framework and Preferred Practices for Palliative and Hospice Care. Washington, D. C.: National Quality Forum, 2007.
5. Teno JM, Byock I, Field MJ: Research agenda for developing measures to examine quality of care and quality of life of patients diagnosed with life-limiting illness. J Pain Symptom Manage 1999;17:75-82.
6. Steinhauser KE, Clipp EC, Tulsky JA: Evolution in measuring the quality of dying. J Palliat Med 2002;5:407-414.
7. Mularski RA, Dy SM, Shugaman LR, Wilkinson AM, Lynn J, Shekelle PG, Morton SC, Sun VC, Hughes RG, Hilton LK, Maglione M, Rhodes SL, Rolon C, Lorenz KS: A systematic review of measures of end of life care and its outcomes. Health Serv Res 2007;42:1848-1870.
8. Lorenz KA, Lynn J, Dy SM, Wilkinson AM, Mularski RA, Shugarman LR, Hughes RG, Asch SM, Rolon C, Rastegar A, Shekelle PG: Quality measures for symptoms and advance care planning in cancer: A systematic review. J Clin Oncol 2006;24:4933-4938.
9. Higginson IJ, Romer AL: Measuring quality of care in palliative care services. J Palliat Med 2000;3:229-236.
10. Teno J: Time: Toolkit of Instruments to Measure End-of-Life Care. www.cher.brown.edu/pcoc/toolkit.htm (Last accessed March 13, 2007).
11. Zwakhalen SMG, Hamers JPH, Abu-Saad HH, Berger MPF: Pain in elderly people with severe dementia: A systematic review of behavioural pain assessment tools. BMC Geriatr 2006;6:3
12. Wenger NS, Shekelle PG: Assessing care of vulnerable elders: ACOVE project overview. Ann Intern Med 2001;135(8 Pt 2):642-646.
13. Bjorner JB, Petersen MA, Groenvold M, Aaronson N, Ahiner-Elmqvist M, Arraras J. I, Bredart A, Fayers P, Jordhoy M, Sprangers M, Watson M, Young T: Use of item response theory to develop a shortened version of the EORTC QLQ-C30 emotional functioning scale. Qual Life Res 2004;13:1683-1697.
14. Ford ME, Havstad SL, Kart CS: Assessing the reliability of the EORTC QLQ-C30 in a sample of older African American and Caucasian adults. Qual Life Res 2001;10:533-541.
15. Kaasa T, Loomis J, Gillis K, Bruera E, Hanson J: Inter-rater reliability of formally trained and self-trained raters using the Edmonton Functional Assessment Tool. Palliat Med 2000;14:509-517.
16. Kaasa S, Wessel J, Darrah J, Bruera E: The EORTC core quality of life questionnaire (QLQ-C30): Validity and reliability when analysed with patients treated with palliative radiotherapy. Eur J Cancer 1995;31 A: 2260-2263.
17. Stromgren AS, Groenvold M, Petersen MA, Goldschmidt D, Pedersen L, Spile M, Irming-Pedersen G, Sjogren P: Pain characteristics and treatment outcome for advanced cancer patients during the first week of specialized palliative care. J Pain Symptom Manage 2004;27:104-113.
18. Teno JM, Clarridge B, Casey V, Edgman Levitan S, Fowler J: Validation of toolkit after-death bereaved family member interview. J Pain Symptom Manage 2001;22:752-758.
19. Connor SR, Tecca M, Lund-Person J, Teno J: Measuring hospice care: The National Hospice and Palliative Care Organization National Hospice Data Set. J Pain Symptom Manage 2004;28:16-28.
20. Connor SR, Teno J, Spence C, Smith N: Family evaluation of hospice care: Results from voluntary submission of data via website. J Pain Symptom Manage 2005;30:9-17.
21. Cella DF, Tulsky DS, Gray G, Sarafian B, Linn E, Bonomi A, Silberman M, Yellen SB, Winicour P, Brannon J: The Functional Assessment of Cancer Therapy scale: Development and validation of the general measure. J Clin Oncol 1993;11:570-579.
22. Montoya M, Fossella F, Palmer JL, Kaur G, Pace EA, Yadav R, Simmonds M, Gillis T, Bruera E: Objective evaluation of physical function in patients with advanced lung cancer: A preliminary report. J Palliat Med 2006;9:309-316.
23. Cohen SR, Mount BM, Bruera E, Provost M, Rowe J, Tong K: Validity of the McGill Quality of Life Questionnaire in the palliative care setting: A multi-centre Canadian study demonstrating the importance of the existential domain. Palliat Med 1997;11:3-20.
24. Cohen SR, Mount BM, Strobel MG, Bui F: 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 1995;9:207-219.
25. Lo RSK, Woo J, Zhoc KCH, Charlotte YP, Yeo W, Johnson P, Mak Y, Lee J: Quality of life of palliative care patients in the last two weeks of life. J Pain Symptom Manage 2002;24:388-397.
26. Byock IR, Merriman MP: Measuring quality of life for patients with terminal illness: The Missoula-VITAS quality of life index. Palliat Med 1998;12:231-244.
27. Steele LL, Mills B, Hardin SR, Hussey LC: The quality of life of hospice patients: Patient and provider perceptions. Am J Hosp Palliat Care 2005;22:95-110.
28. Williams A, Selwyn PA, Liberti L, Molde S, Njike VY, McCorkle R, Zelterman D, Katz DL: A randomized controlled trial of meditation and massage effects on quality of life in people with late-stage disease: A pilot study. J Palliat Med 2005;8:939-952.
29. 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.
30. Horton R: Differences in assessment of symptoms and quality of life between patients with advanced cancer and their specialist palliative care nurses in a home care setting. Palliat Med 2002;16:488-494.
31. Mystakidou K, Tsilika E, Kouloulias V, Parpa E, Katsouda E, Kouvaris J, Vlahos L: The "Palliative Care Quality of Life Instrument (PQLI) " in terminal cancer patients. Health Qual Life Outcomes 2004;2:8.
32. Yun YH, Kim SH, Lee KM, Park SM, Lee CG, Choi YS, Heo DS: Patient-reported assessment of quality care at end of life: Development and validation of Quality Care Questionnaire-End of Life (QCQ-EOL). Eur J Cancer 2006;42:2310-2317.
33. Curtis JR, Patrick DL, Engelberg RA, Norris K, Asp C, Byock I: A measure of the quality of dying and death. Initial validation using after-death interviews with family members. J Pain Symptom Manage 2002;24:17-31.
34. Patrick DL, Engelberg RA, Curtis JR: Evaluating the quality of dying and death. J Pain Symptom Manage 2001;22:717-726.
35. Sulmasy DP, McIlvane JM, Pasley PM, Rahn M: A scale of measuring patient perceptions of the quality of end-of-life care and satisfaction with treatment: The reliability and validity of QUEST. J Pain Symptom Manage 2002;23:458-470.
36. Kiely DK, Volicer L, Teno J, Jones RN, Prigerson HG, Mitchell SL: The validity and reliability of scales for the evaluation of end-of-life care in advanced dementia. Alzheimer Dis Assoc Disord 2006;20:176-181.
37. Kristjanson LJ: Validity and reliability testing of the FAM-CARE Scale: Measuring family satisfaction with advanced cancer care. Soc Sci Med 1993;36:693-701.
38. Kristjanson LJ, Leis A, Koop PM, Carriere KC, Mueller B: Family members' care expectations, care perceptions, and satisfaction with advanced cancer care: Results of a multisite pilot study. J Palliat Care 1997;13:5-13.
39. Ringdal GI, Jordhoy MS, Kaasa S: Measuring quality of palliative care: Psychometric properties of FAMCARE Scale. Qual Life Res 2003;12:167-176.
40. Feldt KS: The checklist of nonverbal pain indicators (CNPI). Pain Manage Nurs 2000;1:13-21.
41. Hurley AC, Volicer BJ, Hanrahan PA, Houde S, Volicer L: Assessment of discomfort in advanced Alzheimer patients. Res Nurs Health 1992;15:369-377.
42. Gauvain-Piquard A, Rodary C, Resvan A, Serbouti S: The development of the DEGR (R): A scale to assess pain in young children with cancer. Eur J Pain 2006;3:165-176.
43. Bruera E, Kuehn N, Miller M. J, Selmser P, Macmillan K: The Edmonton Symptom Assessment System (ESAS): A simple method for the assessment of palliative care patients. J Palliat Care 1991;7:6-9.
44. Modonesi C, Scarpi E, Maltoni M, Derni S, Fabbri L, Martini F, Sansoni E, Amadori D: Impact of palliative care unit admission on symptom control evaluated by the Edmonton Symptom Assessment System. J Pain Symptom Manage 2005;30:367-373.
45. Tierney RM, Horton SM, Hannan T J, Tierney VM: Relationships between symptom relief, quality of life, and satisfaction with hospice care. Palliat Med 1998;12:333-344.
46. Melzack R: The McGill Pain Questionnaire: Major properties and scoring methods. Pain 1975;1:277-299.
47. Melzack R: The short-form McGill Pain Questionnaire. Pain 1987;30:191-197.
48. Melzack R, Ofiesh JG, Mount BM: The Brompton mixture: Effects on pain in cancer patients. Can Med Assoc J 1976;115:125-129.
49. Warden V, Hurley A. C, and Volicer L: Development and psychometric evaluation of the Pain Assessment in Advanced Dementia (PAINAD) scale. J Am Med Dir Assoc 2003;4:9-15.
50. Campbell M: Psychometric testing of a respiratory distress observational scale. J Palliat Med 2008;11:44-50.
51. Wilson KG, Graham ID, Viola RA, Chater S, de Faye BJ, Weaver LA, Lachance JA: Structured interview assessment of symptoms and concerns in palliative care. Can J Psychiatry 2004;49:350-358.
52. Hoekstra J, Bindels PJ, van Duijn NP, Schade E: The symptom monitor. A diary for monitoring physical symptoms for cancer patients in palliative care: Feasibility, reliability and compliance. J Pain Symptom Manage 2004;27:24-35.
53. Morita T, Tsunoda J, Inoue S, Chihara S, Oka K: Communication Capacity Scale and Agitation Distress Scale to measure the severity of delirium in terminally ill cancer patients: A validation study. Palliat Med 2001;15:197-206.
54. Alexopoulos GS, Abrams RC, Young RC, Shamoian CA: Cornell Scale for Depression in Dementia. Biol Psychiatry 1988;23:271-284.
55. Kurlowicz LH, Evans LK, Strumph NE, Maislin G: A psychometric evaluation of the Cornell Scale for Depression in Dementia in a frail, nursing home population. Am J Geriatr Psychiatry 2002;10:600-608.
56. Kroenke K, Spitzer RL, Williams JB: The PHQ-9: Validity of a Brief Depression Severity Measure. J Gen Intern Med 2001;16:606-613.
57. Lowe B, Schenkel I, Carney-Doebbeling C, Gobel C: Responsiveness of the PHQ-9 to psychopharmacological depression treatment. Psychosomatics 2006;47:62-67.
58. Robinson JA, Crawford GB: Identifying palliative care patients with symptoms of depression: An algorithm. Palliat Med 2005;19:278-287.
59. Beckwith BE, Beckwith SK, Gray TL, Micsko MM, Holm JE, Plummer VH, Flaa SO: Identification of spouses at high risk during bereavement: A preliminary assessment of Parkes and Weiss' Risk Index. Hosp J 1990;6:35-46.
60. Kristjanson LJ, Cousins K, Smith J, Lewin G: Evaluation of the Bereavement Risk Index (BRI): A community hospice care protocol. Int J Palliat Nurs 2005;11:610, 612-618.
61. Robinson JA, Crawford GB: Identifying palliative care patients with symptoms of depression: An algorithm. Palliat Med 2005;19:278-287.
62. Broadhead WE, Gehibach SH, de Gruy FV, Kaplan BH: The Duke-UNC Functional Social Support Questionnaire. Measurement of social support in family medicine patients. Med Care 1988;26:709-723.
63. Herndon JE, Fleishman S, Kosty MP, Green MR: A longitudinal study of quality of life in advanced non-small cell lung cancer: Cancer and Leukemia Group B (CALGB) 8931. Control Clin Trials 1997;18:286-300.
64. Cooper B, Kinsella GJ, Picton C: Development and initial validation of a family appraisal of caregiving questionnaire for palliative care. Psychooncology 2006;15:613-622.
65. Hogan NS, Greenfield DB, Schmidt LA: Development and validation of the Hogan Grief Reaction Checklist. Death Stud 2001;25:1-32.
66. Peterman A. H, Fitchett G, Brady MJ, Hernandez L, Cella D: Measuring spiritual well-being in people with cancer: The functional assessment of chronic illness therapy-Spiritual Well-being Scale (FACIT-Sp). Ann Behav Med 2002;24:49-58.
67. Warner SC, Williams JI: The Meaning in Life Scale: Determining the reliability and validity of a measure. J Chronic Dis 1987;40:503-512.
68. Holland JC, Kash KM, Passik S, Gronert MK, Sison A, Lederberg M, Russak SM, Gaider L, Fox B: A brief spiritual beliefs inventory for use in quality of life research in lifethreatening illness. Psychooncology 1998;7:460-469.
69. Doorenbos AZ, Schim SM, Benkert R, Borse NN: Psychometric evaluation of the cultural competence assessment instrument among healthcare providers. Nurs Res 2005;54:324-331.
70. Schim SM, Doorenbos A Z, Miller J, Benkert R: Development of a cultural competence assessment instrument. J Nurs Measure 2003;11:29-40.
71. Coleman EA, Mahoney E, Parry C: Assessing the quality of preparation for posthospital care from the patient's perspective: The care transitions measure. Med Care 2005;43:246-255.
72. O'Connor AM: Validation of a decisional conflict scale. Med Decis Making 1995;15:25-30.
73. Song M, Sereika SM: An evaluation of the Decisional Conflict Scale for measuring the quality of end-of-life decision making. Patient Educ Couns 2006;61:397-404.
74. Engelberg R, Downey L, Curtis JR: Psychometric characteristics of a quality of communication questionnaire assessing communication about end-of-life care. J Palliat Med 2006;9:1086-1098.
75. Linn MW, Linn BS: The rapid disability rating scale-2. J Am Geriatr Soc 1982;30:378-382.
76. Anderson F, Downing GM, Hill J, Casorso L, Lerch N: Palliative Performance Scale (PPS): A new tool. J Palliat Care 1996;12:5-11.
77. Head B, Ritchie CS, Smoot TM: Prognostication in hospice care: Can the Palliative Performance Scale Help? J Palliat Med 2005;8:492-500.
78. Olajide O, Hanson L, Usher BM, Qaqish BF, Schwartz R, Bernard S: Validation of the palliative performance scale in the acute tertiary care hospital setting. J Palliat Med 2007;10:111-117.