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. 1999 Dec;8(4):219–227. doi: 10.1136/qshc.8.4.219

Development and validation of a core outcome measure for palliative care: the palliative care outcome scale

J Hearn, I J Higginson
PMCID: PMC2483665  PMID: 10847883

Abstract

Objectives - To develop an outcome measure for patients with advanced cancer and their families which would cover more than either physical symptoms or quality of life related questions. To validate the measure in various specialist and non-specialist palliative care settings throughout the UK. Design - A systematic literature review of measures appropriate for use in palliative care settings was conducted. In conjunction with a multidisciplinary project advisory group, questions were chosen for inclusion into the scale based on whether they measured aspects of physical, psychological, or spiritual domains pertinent to palliative care, and whether similar items had shown to be valid as part of another measure. A staff completed version was developed to facilitate data collection on all patients throughout their care, and a patient completed version was designed to enable the patient to contribute to the assessment of their outcomes when possible. A full validation study was conducted to evaluate construct validity, internal consistency, responsiveness to change over time, and test-retest reliability. Assessments were timed. Setting - Eight centres in England and Scotland providing palliative care, including inpatient care, outpatient care, day care, home care, and primary care. Patients - A total of 450 patients entered care during the study period. Staff collected data routinely on patients in care long enough to be assessed (n=337). Of these, 262 were eligible for patient participation; 148 (33%) went on to complete a questionnaire. Main measures - The Palliative Care Outcome Scale (POS), the European Organisation for Research on Cancer Treatment, and the Support Team Assessment Schedule. Results - The POS consists of two almost identical measures, one of which is completed by staff, the other by patients. Agreement between staff and patient ratings was found to be acceptable for eight out of 10 items at the first assessment. The measure demonstrated construct validity (Spearman rho = 0.43 to 0.80). Test/re-test reliability was acceptable for seven items. Internal consistency was good (Cronbach's alpha = 0.65 (patients), 0.70 (staff)). Change over time was shown, but did not reach statistical significance. The questionnaire did not take more than 10 minutes to complete by staff or patients. Conclusion - The POS has acceptable validity and reliability. It can be used to assess prospectively palliative care for patients with advanced cancer.

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Selected References

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  1. Aaronson N. K., Ahmedzai S., Bergman B., Bullinger M., Cull A., Duez N. J., Filiberti A., Flechtner H., Fleishman S. B., de Haes J. C. 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. 1993 Mar 3;85(5):365–376. doi: 10.1093/jnci/85.5.365. [DOI] [PubMed] [Google Scholar]
  2. Axelsson B., Sjödén P. O. Quality of life of cancer patients and their spouses in palliative home care. Palliat Med. 1998 Jan;12(1):29–39. doi: 10.1191/026921698676629560. [DOI] [PubMed] [Google Scholar]
  3. 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 Summer;7(2):6–9. [PubMed] [Google Scholar]
  4. Cohen S. R., Mount B. M., Strobel M. G., 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 Jul;9(3):207–219. doi: 10.1177/026921639500900306. [DOI] [PubMed] [Google Scholar]
  5. Edmonds P. M., Stuttaford J. M., Penny J., Lynch A. M., Chamberlain J. Do hospital palliative care teams improve symptom control? Use of a modified STAS as an evaluation tool. Palliat Med. 1998 Sep;12(5):345–351. doi: 10.1191/026921698677822456. [DOI] [PubMed] [Google Scholar]
  6. Ellershaw J. E., Peat S. J., Boys L. C. Assessing the effectiveness of a hospital palliative care team. Palliat Med. 1995 Apr;9(2):145–152. doi: 10.1177/026921639500900205. [DOI] [PubMed] [Google Scholar]
  7. Eve A., Smith A. M. Palliative care services in Britain and Ireland--update 1991. Palliat Med. 1994;8(1):19–27. doi: 10.1177/026921639400800104. [DOI] [PubMed] [Google Scholar]
  8. Hearn J., Higginson I. J. Outcome measures in palliative care for advanced cancer patients: a review. J Public Health Med. 1997 Jun;19(2):193–199. doi: 10.1093/oxfordjournals.pubmed.a024608. [DOI] [PubMed] [Google Scholar]
  9. Higginson I. J., McCarthy M. Validity of the support team assessment schedule: do staffs' ratings reflect those made by patients or their families? Palliat Med. 1993;7(3):219–228. doi: 10.1177/026921639300700309. [DOI] [PubMed] [Google Scholar]
  10. Kind P., Dolan P., Gudex C., Williams A. Variations in population health status: results from a United Kingdom national questionnaire survey. BMJ. 1998 Mar 7;316(7133):736–741. doi: 10.1136/bmj.316.7133.736. [DOI] [PMC free article] [PubMed] [Google Scholar]
  11. McWhinney I. R., Bass M. J., Donner A. Evaluation of a palliative care service: problems and pitfalls. BMJ. 1994 Nov 19;309(6965):1340–1342. doi: 10.1136/bmj.309.6965.1340. [DOI] [PMC free article] [PubMed] [Google Scholar]
  12. Muldoon M. F., Barger S. D., Flory J. D., Manuck S. B. What are quality of life measurements measuring? BMJ. 1998 Feb 14;316(7130):542–545. doi: 10.1136/bmj.316.7130.542. [DOI] [PMC free article] [PubMed] [Google Scholar]
  13. Rinck G. C., van den Bos G. A., Kleijnen J., de Haes H. J., Schadé E., Veenhof C. H. Methodologic issues in effectiveness research on palliative cancer care: a systematic review. J Clin Oncol. 1997 Apr;15(4):1697–1707. doi: 10.1200/JCO.1997.15.4.1697. [DOI] [PubMed] [Google Scholar]
  14. Spitzer W. O., Dobson A. J., Hall J., Chesterman E., Levi J., Shepherd R., Battista R. N., Catchlove B. R. Measuring the quality of life of cancer patients: a concise QL-index for use by physicians. J Chronic Dis. 1981;34(12):585–597. doi: 10.1016/0021-9681(81)90058-8. [DOI] [PubMed] [Google Scholar]
  15. Sprangers M. A., Aaronson N. K. 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 Jul;45(7):743–760. doi: 10.1016/0895-4356(92)90052-o. [DOI] [PubMed] [Google Scholar]

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