Association for Palliative Medicine

of Great Britain and Ireland

THE WHICH TOOL GUIDE: Preliminary review of tools to measure clinical effectiveness in palliative care

CLINICAL GOVERNANCE
CLINICAL EFFECTIVENESS GROUP

11 Westwood Road, Southampton SO17 1DL Tel/fax 023 8067 2888 email: apmsecretariat@claranet.co.uk www.palliative-medicine.org
AUGUST 2001

The Which Tool Guide:

Preliminary review of tools to measure clinical effectiveness in palliative care

INTRODUCTION How and why the group was set up The Association for Palliative Medicine Clinical Effectiveness Group first convened in May 2000. Chaired by Professor Irene Higginson, the terms of reference for this group were: 1. To consider current methods of measuring outcomes in palliative care 2. To liase with the Department of Health and other bodies in areas relating to clinical effectiveness 3. To propose ways forward in ensuring clinical effectiveness (including outcome measures in palliative care) 4. To report to the Clinical Governance Group The Clinical Effectiveness Group is represented by two of its members on the Clinical Governance Group, which convened in November 2000. Definition of clinical effectiveness A therapy or service is clinically effective if their application achieves an intended benefit in clinical practice. Therefore to assess clinical effectiveness, the outcomes (results) of care need to be measured.

WHY MEASURE CLINICAL EFFECTIVENESS? We need to measure Clinical Effectiveness to: ensure that we provide the most effective services, that meet the needs of patients and their families ensure that the service palliative care professionals provide remains responsive to changes in health care and treatments, to provide the best in care demonstrate the impact that palliative care services and treatments have. develop a case for funding and aid negotiation in seeking funding for palliative care services from Primary Care and Acute Trusts. evaluate new services highlight areas where care of the dying is inadequate and develop strategies to improve care contribute towards implementing clinical governance RATIONALE FOR PRODUCING A GUIDE Clinical practice in palliative care encompasses physical, emotional, social and spiritual aspects of illness. A wide range of measures is needed to capture all the aspects of illness and measure the outcomes of care. Previous work has reviewed measures in different contexts, but a practical simple guide for APM members is not available. Therefore the group sought to build on existing work and reviews, in order to design an APM WHICH TOOL GUIDE to outcome measures. The aim was not to recommend any one system, but to provide APM members with the tools that could be selected to suit appropriate purposes and settings. Because of time and resource constraints this is not a comprehensive review. Other useful resources and references to more detailed reviews are identified in a final section.

The APM WHICH TOOL GUIDE: A quick guide to outcome measures that may be useful in measuring the effectiveness of palliative care A MEDLINE search was carried out to identify these outcome measures to check whether they had been carried out in more than one centre (see below for criteria) Use in research or clinical palliative care We have also provided a guide to whether we would recommend the tools in research or palliative care in the table based on the following criteria. 1. Research used in more that one centre for research in palliative care; relevant to palliative care goals. 2. Clinical used in more than one centre for clinical practice in palliative care; relevant to palliative care goals; short and easy to use. This guide is for preliminary information only, and is the assessment of the authors, and will need to be validated. In order to avoid conflicts of interest, the decision on awarding a research triangle or clinical star was made, in each case, by members of the group who had not been involved in developing that particular outcome measure.
Measure, scale or tool An initial assessment of suffering1 CAMPAS (Cambridge Palliative Audit Schedule)2 Edmonton Functional Assessment Tool3 Edmonton Symptom Assessment Used in Strengths Limitations Useful for: Clinical C Research v

Acute hospitals, advanced cancer Developed from STAS for use in primary care to assess palliative care Inpatients in palliative care units Inpatient setting

Can be used either by patient or at trained nurse interview Developed for primary care team members, useful for recording assessments and monitoring care Simple to use 10 items, mainly function Quick and can be used either by patient or with

43 questions long, time to complete not known. Not very widely tested or validated

Function alone may not be the patients chief concern Potential bias introduced by change in the person

Scale4

nurse assistance

EORTC European Organisation for Research into Treatment of Cancer QLQ C305 FACT, Functional Assessment of Cancer Therapies6 HRCA QL. Hebrew Rehabilitation Centre for Aged, Quality of Life Index7

Linear pain or comfort rating Scales

McGill Quality of Life Questionnaire8

Developed for chemotherapeutic cancer trials lung cancer patients; work of palliative module underway General cancer settings in US, especially research studies has a palliative module Adapted from the Spitzer Quality of Life Index, used in the National Hospice Study, in in-patient, home care and conventional care in elderly populations Forms basis of many assessment tools eg. postsurgical pain management evaluation Advanced cancer and HIV patients at home or inpatient palliative care unit Of whole palliative care service

Reliable and valid in research settings, broad ranging

recording the answers as care continues. Patient may have concerns other than symptoms. Functional questions may cause distress if asked repeatedly

Major validation programme

Use in palliative care not yet widely reported

Short and quick

Has not been revalidated and lacks responsiveness in advanced disease, completed by professionals

A patient centred approach, simple, relatively quick

Magnet single outcome that pulls together all related individual outcomes9 MYMOP

Includes an existential domain, as well as symptoms and psychological issues Easy to understand and adapt locally, simple, and relatively easy to use. Allows patient to

Pain relief alone may not be patients chief concern. Need to look more widely, in some visual analogue scales are hard to use Not been widely tested in UK settings.

Cv

Not validated or tested widely, depends upon what outcome is chosen as the magnet

Used for rating

Patients need to be

(measure your own medical outcome profile)10

effect of complementary therapies and in chronic bronchitis

PACA Palliative Care Assessment11 PCCS -Palliative Care Core Standards12 POS Palliative Care Outcome Scale13

Hospital palliative care team and outpatient Inpatient hospice

identify the guided in its use symptoms of greatest importance to them and monitor impact of care / intervention on these Short and relatively Professional simple to use completion Comprehensive tool, covering structure, process, education and training Simple and short has patient completion and staff completion component; tested for validity and reliability, has items for individual patient generation Quick and easy to measure and aggregate. Easy to make comparisons Reflects patient choice and individual wishes Quick and easy to measure and aggregate. Clear operational definitions allow valid comparisons between districts Short; validity tested in cancer trials Lengthy expected to take 10 minutes to complete May not be sufficiently detailed; some aspects require further testing

Used in inpatient hospice, day care, hospital support team, home care and primary care

Cv

Proportion who die at home

Used by health authorities to monitor overall care Used by some palliative home care and primary care teams. A proxy measure that can give some indication of the availability of community support services Use in inpatient palliative care setting

Proportion who die in their place of choice Proportion of final weeks spent at home

Home death may not have been patient choice. May be distorted by lack of appropriate inpatient provision. Difficult to get information in some circumstances, choice may change over time. May be distorted by lack of appropriate inpatient provision

Rotterdam Symptom Checklist14

Reports of use in palliative care mixed

Spitzer Quality of Life Index15

Used as basis for Short and quick comparison with McGill Quality of Life Scale Used by community palliative care teams, hospital teams, day care, inpatient units and hospital at home services Life-threatening cancer and heart disease In patient palliative care A wide ranging checklist looking at clinical and communication issues; available in other languages and has been modified with additional specific items Some validation; looks at symptoms and mood in relation to quality of life Patient centred, the patient identifies the important areas

STAS16

Has not been validated in palliative care and lacks responsiveness in advanced disease, completed by professionals Teams need to Cv actively use this questioning each section, not just ticking boxes; professional completion Patient completion in presence of interviewer Can be complex and time consuming

Symptom Distress Scale17

SEIQoL Schedule for the Evaluation of Individual Quality of Life18 VOICES Views Of Informal Cares, Experience and Services19

Cv

Population based, views of bereaved carer or person who knew most about the patients last year of life

Includes carers, and most persons irrespective of the service received, developed from questionnaire used since 1967, postal.

Carers may not represent the patients views, and are not available for some. May not get good response from minority groups.

Other useful resources Here is a list of other useful resources. These have not been included in the above WHICH TOOL guide because they are not outcome measures per se, but are listed here because they may provide helpful reference points in the arena of clinical effectiveness in palliative care. PEPSI COLA Checklist developed in primary care for palliative care needs of dying patients; includes needs/support matrix.20

Compass A clinical value compass that identifies the balance between functional health status, satisfaction against need, total costs and clinical outcomes.21 Review by Hearn and Higginson A published review of outcome measures in palliative care for advanced cancer patients.22 Oxford Textbook of Palliative Medicine Describes basics in audit and outcome measures in palliative care.23 Care of the Dying Pathway Provides a flowsheet which outlines the expected course of patients care during last 48 hours of life.24 Evaluating Palliative Care Book by Margaret Robbins - about outcome indicators that can be used to evaluate palliative care from a patient, carer, staff and service perspective.25 Examples of websites on quality of life measures
www.glmed.org/index.html www.chcr.brown.edu www.picker.org www.hospicecare.com www.atsqol.org/qinst

Evidence-based Palliative Care Book by Huda Abu-Saad (publishers: Blackwell Science); just published no comment available yet. Minimum Data Set and other activity statistics Allows comparison between local data and regional/national data; its usefulness depends on reliability and accuracy of data, especially in the way data is collected.

NEXT STEPS
We recognise that this guide is limited. It is not a systematic review of measures. However, it is intended to provide information for APM members, so that they can make choices more easily about the tools to use to monitor clinical effectiveness. In the future, work is needed to: Systematically review and appraise tools of research and clinical practice in palliative care Update the WHICH TOOL Guide Study the use of tools to aid clinical practice and in research. REFERENCES:
1. MacAdam DB, Smith M. An initial assessment of suffering in terminal illness. Palliative Medicine 1987; 1: 34-47 2. Rogers MS, Barclay SI, Todd CJ. Developing the Cambridge palliative audit schedule (CAMPAS): a palliative care audit for primary health care teams. Br J Gen Prac 1998 May; 48(430): 1224-7. 3. Kaasa T, Loomis J, Gillis K, Bruera E, Hanson J. The Edmonton Functional Assessment Tool: preliminary development and evaluation for use in palliative care. J Pain Symptom Manage 1997 Jan; 13(1): 10-9. 4. Bruera E, Kuehn N, Miller MJ, 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(2): 6-9 5. Aaronson NK, Ahmedzai S, Bergman B, et al. The European Organisation for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. J Nat Cancer Inst 1993; 85: 365-76. 6. Brady MJ, Cella D. Assessing the quality of life in palliative care. Cancer Treat Res 1999: 100: 203-16. 7. Morris J, Suissa S, Sherwood S, Greer D. Last days: a study of the quality of life of terminally ill cancer patients. J Chron Dis 1986; 39: 47-62 8. 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(3): 207-19 9. Countess Mountbatten House Outcomes Conference 1999 (personal communication) 10. Patterson C. Measuring outcomes in primary care: a patient generated measure, MYMOP, compared with the SF-36 health survey. Br Med J 1996: 312: 1016-20 11. Ellershaw J, Peats S, Boys L. Assessing the effectiveness of the hospital palliative care team. Palliat Med 1995; 9: 145-52 12. Trent Hospice Audit Group. Palliative Care Core Standards: a multi-disciplinary approach. Trent Hospice Audit 1992, c/o Nightingale Macmillan Continuing Care Unit, Derby

13. Hearn J, Higginson IJ. Development and validation of a core outcome measure for palliative care: the palliative care outcome scale. Quality in Health Care 1999: 8: 219-27 14. de Haes JCJM, van Knippenberg FCE, Neijt JP. Measuring psychological and physical distress in cancer patients: structure and application of the Rotterdam Symptom Checklist. Br J Cancer 1990; 62: 1034-38. 15. Spitzer WO, Dobson AJ, Hall J, Chesterman E, Levi J, Shepherd R, Battista RN, Catchlove BR. Measuring the quality of life of cancer patients: a concise QLindex for use by physicians. J Chronic Dis 1981; 34(12): 585-79. 16. Higginson I. A community schedule. In: Higginson I. Ed. Clinical audit in palliative care. Oxford: Radcliffe Medical Press, 1993: 34-37. 17. McCorkle R, Young K. Development of a symptom distress scale. Cancer Nurs 1978: 101: 373-78 18. OBoyle CA, McGee H, Joyce CRB. Quality of life: assessing the individual. Adv Med Sociol 1994: 5: 159-80 19. Addington-Hall J et al. A randomised controlled trial of postal versus interviewer administration of a questionnaire measuring satisfaction with, and use of, services received in the year before death. J Epidemiol Community Health 1998: 52(12): 802-7 20. Thomas, Keri. PEPSI-COLA. Personal communication (tel: 01484 466027) 21. Nelson EC et al. Improving health care Part 1: The Clinical Value Compass. Joint Commission Journal on Quality Improvement 1996: 22: 243-258 22. Hearn J and Higginson IJ. Outcome measures in palliative care for advanced cancer patients: a review. Journal of Public Health Medicine 1997: 19(2): 193-99 23. Doyle D, Hanks G and MacDonald (eds). Oxford Textbook of Palliative Medicine. 1998, Oxford University Press, New York. 24. Ellershaw J, Foster A, Murphy D, Shea T and Overill S. Developing an integrated care pathway for the dying patient. European Journal of Palliative Care 1997: 4(6): 203-7. 25. Robbins M. Evaluating Palliative Care: Establishing the evidence base. 1998, Oxford University Press.

MEMBERSHIP OF THE APM CLINICAL EFFECTIVENESS WORKING GROUP Professor Irene Higginson (Chair) Dr Charles Campion-Smith Dr Mary Miller Dr Keri Thomas Dr Bee Wee