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Outcome assessment instruments in palliative and hospice care—a review of the literature

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Abstract

Background

As different definitions for PC have been used across the last three decades, a common terminology is lacking. To ensure quality of care, (a) a consensus on outcome criteria and indicators and (b) validated and applicable outcome assessment instruments are necessary. The aim of this study is to systematically review instrument for outcome assessment that have been used or proposed for research and clinical practice in palliative care.

Method

A systematic literature search in electronic databases Cinahl, MEDLINE, EMBASE, and PsychoINFO until December 2009 was conducted to identify articles describing outcome assessment in palliative care. Following extraction of relevant publications, the outcome assessment instruments were categorized in outcome domains and target groups.

Results

The literature search resulted in 8,607 hits. Deduplication and exclusion of irrelevant or unavailable publications allowed for 725 publications which were analyzed in detail. At least 528 different outcome assessment instruments were applied. Four target groups were identified: patients, family members, staff members, and the health care system. Fifteen patient domains were identified: quality of life, quality of care, symptoms and problems, performance status, psychological symptoms, decision-making and communication, place of death, stage of disease, mortality and survival, distress and wish to die, spirituality and personality, disease-specific outcomes, clinical features, meaning in life, and needs. The majority of instruments were found only in single cases and a minority of instruments were validated. Validated instruments were used more often.

Conclusions

The wide scope of existing instruments makes consensus on a universal set of instruments for outcome assessment in palliative care improbable. A framework with a set of appropriate instruments could help (1) to harmonize the variety of tools used in research and clinical practice, (2) to allow for more comparability, and (3) to define gaps were tools maybe missing and should be developed.

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References

  1. Pastrana T et al (2008) A matter of definition—key elements identified in a discourse analysis of definitions of palliative care. Palliat Med 22(3):222–232

    Article  PubMed  CAS  Google Scholar 

  2. Caraceni A et al (2002) Pain measurement tools and methods in clinical research in palliative care: recommendations of an Expert Working Group of the European Association of Palliative Care. J Pain Symptom Manag 23(3):239–255

    Article  Google Scholar 

  3. Hughes R et al (2004) It just didn’t work: the realities of quality assessment in the English health care context. Int J Nurs Stud 41(7):705–712

    Article  PubMed  Google Scholar 

  4. Harding R et al (2007) Measuring and improving palliative care in South Africa: multiprofessional clinical perspectives on development and application of appropriate outcome tools. Prog Palliat Care 15(2):55–59

    Article  Google Scholar 

  5. Grunfeld E et al (2008) Toward population-based indicators of quality end-of-life care: testing stakeholder agreement. Cancer 112(10):2301–2308

    Article  PubMed  Google Scholar 

  6. Casarett DJ, Teno J, Higginson I (2006) How should nations measure the quality of end-of-life care for older adults? Recommendations for an International Minimum Data Set. J Am Geriatr Soc 54(11):1765–1771

    Article  PubMed  Google Scholar 

  7. Mystakidou K, Greek MD et al (2004) Anderson Symptom Inventory: validation and utility in cancer patients. Oncology 67(3–4):203–210

    Article  PubMed  Google Scholar 

  8. Echtedl MA et al (2006) EORTC QLQ-C15-PAL: the new standard in the assessment of health-related quality of life in advanced cancer? Palliat Med 20(1):1–2

    Article  Google Scholar 

  9. Richards MA, Ramirez AJ (1997) Quality of life: the main outcome measure of palliative care. Palliat Med 11(2):89–92

    Article  PubMed  CAS  Google Scholar 

  10. O’Boyle CA, Waldron D (1997) Quality of life issues in palliative medicine. J Neurol 244(suppl4):S18–S25

    Article  PubMed  Google Scholar 

  11. Kutner JS (2008) Assuring quality end-of-life care: imperative to expand the evidence base in concert with growth of the field. J Am Geriatr Soc 56(1):160–162

    Article  PubMed  Google Scholar 

  12. Groenvold M et al (2006) The development of the EORTC QLQ-C15-PAL: a shortened questionnaire for cancer patients in palliative care. Eur J Cancer 42(1):55–64

    Article  PubMed  Google Scholar 

  13. Calman KC (1984) Quality of life in cancer patients—an hypothesis. J Med Ethics 10(3):124–127

    Article  PubMed  CAS  Google Scholar 

  14. Daltroy LH et al (1999) Discrepancies between self-reported and observed physical function in the elderly: the influence of response shift and other factors. Soc Sci Med 48(11):1549–1561

    Article  PubMed  CAS  Google Scholar 

  15. Norman G (2003) Hi! How are you? Response shift, implicit theories and differing epistemologies. Qual Life Res 12(3):239–249

    Article  PubMed  Google Scholar 

  16. Aspinal F et al (2003) Using satisfaction to measure the quality of palliative care: a review of the literature. J Adv Nurs 42(4):324–339

    Article  PubMed  Google Scholar 

  17. Buchan JE (2003) Responses to: ‘Using satisfaction to measure the quality of palliative care: a review of the literature’. J Adv Nurs 43(5):531–532

    Article  PubMed  Google Scholar 

  18. Lorenz KA et al (2006) Quality measures for symptoms and advance care planning in cancer: a systematic review. J Clin Oncol 24(30):4933–4938

    Article  PubMed  Google Scholar 

  19. Pasman HR et al (2009) Quality indicators for palliative care: a systematic review. J Pain Symptom Manag 38(1):145–156

    Article  Google Scholar 

  20. Bruley DK (1999) Beyond reliability and validity: analysis of selected quality-of-life instruments for use in palliative care. J Palliat Med 2(3):299–309

    Article  PubMed  CAS  Google Scholar 

  21. Mularski RA (2006) Defining and measuring quality palliative and end-of-life care in the intensive care unit. Crit Care Med 34(11 Suppl):S309–S316

    Article  PubMed  Google Scholar 

  22. Pastrana T et al (2010) Outcome indicators in palliative care—how to assess quality and success. Focus group and nominal group technique in Germany. Support Care Cancer 18(7):859–868

    Article  PubMed  Google Scholar 

  23. Aaronson NK et al (1993) The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. J Natl Cancer Inst 85(5):365–376

    Article  PubMed  CAS  Google Scholar 

  24. Cohen SR et al (1995) 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 9(3):207–219

    Article  PubMed  CAS  Google Scholar 

  25. McHorney CA et al (1994) The MOS 36-item Short-Form Health Survey (SF-36): III. Tests of data quality, scaling assumptions, and reliability across diverse patient groups. Med Care 32(1):40–66

    Article  PubMed  CAS  Google Scholar 

  26. McHorney CA, Ware JE Jr, Raczek AE (1993) The MOS 36-Item Short-Form Health Survey (SF-36): II. Psychometric and clinical tests of validity in measuring physical and mental health constructs. Med Care 31(3):247–263

    Article  PubMed  CAS  Google Scholar 

  27. Cella DF et al (1993) The functional assessment of cancer therapy scale: development and validation of the general measure. J Clin Oncol 11(3):570–579

    PubMed  CAS  Google Scholar 

  28. O’Boyle C (1994) The schedule for the evaluation of individual quality of life. Int J Ment Heal 23:3–23

    Google Scholar 

  29. Chang VT, Hwang SS, Feuerman M (2000) Validation of the Edmonton symptom assessment scale. Cancer 88(9):2164–2171

    Article  PubMed  CAS  Google Scholar 

  30. Hearn J, Higginson IJ (1999) Development and validation of a core outcome measure for palliative care: the palliative care outcome scale. Palliat Care Core Audit Proj Advis Group Qual Health Care 8(4):219–227

    CAS  Google Scholar 

  31. Portenoy RK et al (1994) The Memorial Symptom Assessment Scale: an instrument for the evaluation of symptom prevalence, characteristics and distress. Eur J Cancer 30A(9):1326–1336

    Article  PubMed  CAS  Google Scholar 

  32. Yates JW, Chalmer B, McKegney FP (1980) Evaluation of patients with advanced cancer using the Karnofsky performance status. Cancer 45(8):2220–2224

    Article  PubMed  CAS  Google Scholar 

  33. Anderson F et al (1996) Palliative performance scale (PPS): a new tool. J Palliat Care 12(1):5–11

    PubMed  CAS  Google Scholar 

  34. Le T et al (2004) Quality of life evaluations of caregivers of ovarian cancer patients during chemotherapy treatment. J Obstet Gynaecol Can 26(7):627–631

    PubMed  CAS  Google Scholar 

  35. Salmon JR et al (2005) Validation of the caregiving at life’s end questionnaire. Am J Hosp Palliat Care 22(3):188–194

    Article  PubMed  Google Scholar 

  36. Carroll G et al (2005) The French version of the palliative care quiz for nursing (PCQN-F): development and evaluation. J Palliat Care 21(1):27–34

    PubMed  Google Scholar 

  37. Seow H et al (2009) A framework for assessing quality indicators for cancer care at the end of life. J Pain Symptom Manag 38(6):903–912

    Article  Google Scholar 

  38. Seow H et al (2009) Developing quality indicators for cancer end-of-life care: proceedings from a national symposium. Cancer 115(17):3820–3829

    Article  PubMed  Google Scholar 

  39. Hanson LC et al (2010) The PEACE project review of clinical instruments for hospice and palliative care. J Palliat Med 13(10):1253–1260

    Article  PubMed  Google Scholar 

  40. Boström B et al (2003) Pain and health-related quality of life among cancer patients in final stage of life: a comparison between two palliative care teams. J Nurs Manag 11(3):189–196

    Article  PubMed  Google Scholar 

  41. Grov EK et al (2006) The caregiver reaction assessment: psychometrics, and temporal stability in primary caregivers of Norwegian cancer patients in late palliative phase. Psychooncology 15(6):517–527

    Article  PubMed  Google Scholar 

  42. Addington-Hall J, McCarthy M (1995) Regional Study of Care for the Dying: methods and sample characteristics. Palliat Med 9(1):27–35

    Article  PubMed  CAS  Google Scholar 

  43. Dunwoodie DA, Auret K (2007) Psychological morbidity and burnout in palliative care doctors in Western Australia. Int Med J 37(10):693–698

    CAS  Google Scholar 

  44. Gatchel RJ et al (2002) A preliminary study of multidimensional pain inventory profile differences in predicting treatment outcome in a heterogeneous cohort of patients with chronic pain. Clin J Pain 18(3):139–143

    Article  PubMed  Google Scholar 

  45. Wilkinson S et al (1999) An evaluation of aromatherapy massage in palliative care. Palliat Med 13(5):409–417

    Article  PubMed  CAS  Google Scholar 

  46. Kissane DW et al (2006) Family focused grief therapy: a randomized, controlled trial in palliative care and bereavement. Am J Psychiatry 163(7):1208–1218

    Article  PubMed  Google Scholar 

  47. Onelöv E et al (2007) Measuring anxiety and depression in the oncology setting using visual-digital scales. Acta Oncol 46(6):810–816

    Article  PubMed  Google Scholar 

  48. Jarvis H, Burge FI, Scott CA (1996) Evaluating a palliative care program: methodology and limitations. J Palliat Care 12(2):23–33

    PubMed  CAS  Google Scholar 

  49. Nightingale E et al (2003) Evaluating the Navigate Care Model: clinical palliative care pathways based on anticipated care outcomes… including commentary by Aranda S. Int J Palliat Nurs 9(7):298–307

    PubMed  Google Scholar 

  50. Mularski RA et al (2007) Measuring outcomes in randomized prospective trials in palliative care. J Pain Symptom Manag 34(1 suppl):S7–S19

    Article  Google Scholar 

  51. Buchanan DR et al (2007) Challenges and recommendations for advancing the state-of-the-science of quality of life assessment in symptom management trials. Cancer 110(7):1621–1628

    Article  PubMed  Google Scholar 

  52. Miyashita M et al (2008) Identification of quality indicators of end-of-life cancer care from medical chart review using a modified Delphi method in Japan. Am J Hosp Palliat Care 25(1):33–38

    Article  PubMed  Google Scholar 

  53. Mularski RA et al (2006) Proposed quality measures for palliative care in the critically ill: a consensus from the Robert Wood Johnson Foundation Critical Care Workgroup. Crit Care Med 34(11 Suppl):S404–S411

    Article  PubMed  Google Scholar 

  54. National Consensus Project for Quality Palliative Care (2004) Clinical practice guidelines for quality palliative care, executive summary. J Palliat Med 7(5):611–627

    Article  Google Scholar 

  55. Fayers P, Bottomley A (2002) Quality of life research within the EORTC—The EORTC QLQ-C30. Eur J Cancer 38(suppl 4):S125–S133

    Article  PubMed  Google Scholar 

  56. Cohen SR, Mount BM (2000) Living with cancer: “good” days and “bad” days—what produces them? Can the McGill quality of life questionnaire distinguish between them? Cancer 89(8):1854–1865

    Article  PubMed  CAS  Google Scholar 

  57. Dudgeon DJ, Harlos M, Clinch JJ (1999) The Edmonton Symptom Assessment Scale (ESAS) as an audit tool. J Palliat Care 15(3):14–19

    PubMed  CAS  Google Scholar 

  58. Rees E et al (1998) The use of the Edmonton Symptom Assessment Scale (ESAS) within a palliative care unit in the UK. Palliat Med 12(2):75–82

    Article  PubMed  CAS  Google Scholar 

  59. Serra-Prat M et al (2004) Validation of the Spanish version of the Palliative Care Outcome Scale. Med Clin (Barc) 123(11):406–412

    Article  Google Scholar 

  60. Strömgren AS et al (2002) Symptomatology of cancer patients in palliative care: content validation of self-assessment questionnaires against medical records. Eur J Cancer 38(6):788–794

    Article  PubMed  Google Scholar 

  61. Mor V et al (1984) The Karnofsky Performance Status Scale. An examination of its reliability and validity in a research setting. Cancer 53(9):2002–2007

    Article  PubMed  CAS  Google Scholar 

  62. Mystakidou K et al (2007) Brief cognitive assessment of cancer patients: evaluation of the Mini-Mental State Examination (MMSE) psychometric properties. Psychooncology 16(4):352–357

    Article  PubMed  Google Scholar 

  63. Schachter HM et al (2006) Many quality measurements, but few quality measures assessing the quality of breast cancer care in women: a systematic review. BMC Cancer 6:291

    Article  PubMed  Google Scholar 

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Acknowledgement

This work was supported by the research grant 107509 of the German Cancer Aid (Deutsche Krebshilfe) [1, 22]. First, TP and later SS were funded by this grant. The authors gratefully thank the research workgroup of the German Association of Palliative Medicine (Deutsche Gesellschaft für Palliativmedizin) who critically supervised the study design and commented on the manuscript.

Conflict of interest

The authors have no conflict of interests to declare.

Author information

Authors and Affiliations

  1. Division of Palliative Medicine, University Hospital Erlangen, Krankenhausstraße 12, 91054, Erlangen, Germany

    Stephanie Stiel & C. Ostgathe

  2. Department of Palliative Medicine, RWTH Aachen University, Aachen, Germany

    T. Pastrana & F. Elsner

  3. Institute of Hygiene and Environmental Medicine, RWTH Aachen University, Aachen, Germany

    C. Balzer

  4. Department of Palliative Medicine, University Hospital Bonn, Bonn, Germany

    L. Radbruch

  5. Centre of Palliative Medicine, Malteser Hospital Bonn, Bonn, Germany

    L. Radbruch

Authors
  1. Stephanie Stiel
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  2. T. Pastrana
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  3. C. Balzer
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  4. F. Elsner
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  5. C. Ostgathe
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  6. L. Radbruch
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Correspondence to Stephanie Stiel.

Annex

Annex

Table 4 Outcome dimensions and instruments
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Stiel, S., Pastrana, T., Balzer, C. et al. Outcome assessment instruments in palliative and hospice care—a review of the literature. Support Care Cancer 20, 2879–2893 (2012). https://doi.org/10.1007/s00520-012-1415-x

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