UK Consensus Project on Quality in Palliative Care Day Services

Martin Dempster, Noleen McCorry, Sean O’Connor, Kathy Armour, Jo Coast, J Cohen, M Donnelly, A Finucane, J Fyvie, L Jones, WG Kernohan, K Leemans, D Oxenham, P Perkins

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The UK Consensus Project on Quality in Palliative Care Day Services is funded by MarieCurie and based at Queen’s University, Belfast. It is being carried out in collaboration with anumber of other academic institutions and key stakeholder organizations. The project willinvolve and take into account the perspectives of a range of different stakeholders and itsoutcomes will be relevant to patients, family members, palliative care professionals, andpolicy makers. The aim is to use an expert consensus process to develop a set of qualityindicators for assessment of all aspects [structure, process and outcomes] of quality of care in Palliative Care Day Services. This expert panel will include around 20 people from all over the UK who work in, or have experience of day services. The panel will include a wide range of different professionals and volunteers, as well as people who have experience of attending day services as a patient, a carer or family member.Agreement on a quality indicator set will be reached using the RAND/UCLA Appropriateness Method [1], a method of reaching consensus based on differing opinions. The first stage of the process will involve a panel of 20 experts individually considering and rating the appropriateness of potential quality indicators. Ratings will be based on their own experience and knowledge, as well as a series of evidence summary tables drawn up based on a systematic review carried out to identify existing indicators relevant to palliative care day services. Ratings will be analysed and summarised in advance of the second round, at an expert panel meeting. At this meeting quality indicators and their preliminary ratings will be discussed and re-rated. All ratings will be made anonymously. Unlike other consensus development processes, complete agreement is not required. During the meeting, discussions will be focused specifically on any areas of disagreement, in order to understand how and why the variation was found. Indicators will be considered to be “appropriate” if they have a median rating of 7 or more without disagreement. Disagreement will be defined as more than 30% of panel members give a rating of 3 or less to a potential indicator. An indicator will be considered as “not appropriate” if its median score is 3 or less without disagreement (disagreement being when 30% or more of the ratings are 7 or more). When the median rating is between 4 and 6, or if disagreement is observed, the appropriateness of the indicator will be considered as uncertain and it will be discussed at the panel meeting. The following options will be offered to the panel members: acceptance of a quality indicator, rejection or adjustment of a quality indicator, and merging multiple indicators into a single quality indicator. Panel members will also be asked to identify additional indicators not on the original list, modify existing indicators that may require re-wording and remove those perceived to be irrelevant. Following this discussion, a revised list of indictors will be developed, and panel members will re-rate the appropriateness of each. Panel members will also be asked to rate the feasibility or practicability of measuring each indicator in a typical day service setting using the same 9-point scale. At the end of the process, a set of quality indicators will be developed that passed the first round of individual rating as well as the second-round discussion. This set of quality indicators will be sent to the expert panel by e-mail after the meeting, as well as to other stakeholders, for final approval. Following this, further work will be conducted to develop and test the suitability of a toolkit which can be used to measure quality indicators in palliative care day services.
Original languageEnglish
Title of host publicationUnknown Host Publication
PublisherSAGE Publications
Publication statusE-pub ahead of print - 11 May 2016

Bibliographical note

Reference text: 1. Dawkins L, Gallini A. Gaining the views of service users in a specialist palliative day
care setting. Cancer Nursing Practice 2005, 4(10), 35-39.
2. Bradley SE, Frizelle D, Johnson M. Patients psychosocial experiences of attending
specialist palliative day services: A systematic review. Palliative Medicine 2010,
25(3), 210-228.
3. Schofield P. Snoezelen within a palliative day care setting: a randomised controlled
trial investigating the potential. International Journal of Disability and Human
Development 2009, 7, 234-239.
4. Miyashita M, Misawa T, Abe M, Nakayama Y, Abe K, Kawa M. Quality of life, day
hospice needs, and satisfaction of community-dwelling patients with advanced cancer
and their caregivers in Japan. Journal of Palliative Medicine 2008, 9, 1203-1207.
5. Goodwin DM, Higginson IJ, Myers K, Douglas HR, Normand CE. Effectiveness of
palliative day care in improving pain, symptom control and quality of life. Journal of
Pain and Symptom Management 2003, 25, 202-212.
6. Sviden GA, Furst CJ, van Koch L, Borell L. Palliative day care – a study of well-being
and health related quality of life. Palliative Medicine 2009, 23, 441-447.
7. Payne M. Social objectives in cancer care: the example of palliative day care.
European Journal of Cancer Care 2006, 15, 440-447.
8. Stevens E, Martin CR, White CA. The outcomes of palliative care day services: A
systematic review. Palliative Medicine 2010, 25(2) 153-169.
9. Carr A, Higginson IJ. Are quality of life measures patient centred? British Medical
Journal 2001, 322: 1357-1360.
10. Waldron D, O’Boyle CA, Kearney M, Moriarty M, Carney D. Quality of life
measurement in advanced cancer: assessing the individual. Journal of Clinical
Oncology 1999, 17: 3603-3611.
11. Stiel S, Pastrana T, Balzer C, Elsner F, Ostgathe C, Radbruch L. Outcome
assessment instruments in palliative and hospice care- a review of the literature.
Supportive Cancer Care 2012, 20, 2879-2893.
12. EuroQol Group. EuroQol – a new facility for the measurement of health-related
quality of life. Health Policy 1990, 16: 199-208.
13. 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 multicentre Canadian
study demonstrating the importance of the existential domain. Palliative Medicine
1997; 11: 3-20.
14. O'Boyle CA, Browne J, Hickey A, McGee HM, Joyce CRB. Schedule for the
Evaluation of Individual Quality of Life (SEIQoL): a Direct Weighting Procedure for
Quality of Life Domains (SEIQoL-DW) Administration Manual. Dublin, Department of
Psychology, Royal College of Surgeons in Ireland. 1993.
15. 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:
16. Harding R, Higginson IJ. PRISMA: share best practice in end-of-life cancer care
research and measurement. European Journal of Palliative Care 2010, 7(4), 182-185.
17. Coast J, Flynn TN, Natarajan L, Sproston K, Lewis J, Louviere JJ, Peters TJ. Valuing
the ICECAP capability index for older people. Social Science and Medicine 2008, 67:
18. Fitzpatrick R. Measurement issues in health-related quality of life: Challenges for
health psychology. Psychology and Health 2000, 15, 99-108.
19. Catania G, Costantini M, Beccaro M, Bagnasco A, Sasso L. Does quality of life
assessment in palliative care look like a complex screening program? Health and
Quality of Life Outcomes 2013, 11: 7.
20. Albers G, Echteld MA, de Vet HCW, Onwuteaka-Philipsen BD, van der Linden MHM,
Deliens L. Evaluation of quality of life measures for use in palliative care: a systematic
review. Palliative Medicine 2010, 24: 17-37.
21. Bruley DK. Beyond reliability and validity: analysis of selected quality of life
instruments for use in palliative care. Journal of Palliative Medicine 1999, 2(3), 299-
22. Hearn J, Higginson IJ. Outcome measures in palliative care for advanced cancer
patients: a review. Journal of Public Health Medicine 1997, 19: 193-199.
23. Mularski RA, Dy SM, Shugarman LR, Wilkinson AM, Lynn J, Shekelle PG, Morton
SC, Sun VC, Hughes RG, Hilton LK, Maglione M, Rhodes SL, Rolon C, Lorenz KA. A
systematic review of measures of end of life care and its outcomes. Health Services
Research 2007, 42: 1848-1870.
24. Donabedian A. Quality assurance: structure, process and outcome.
Nursing Standard 1992, 7(11):4-5.
25. National Institute of Clinical Excellence. Supportive and palliative care for adults with
cancer. London: NICE, 2004.
26. Roeline H, Pasman W, Brandt HE, Deliens L, Francke AL. Quality Indicators for
Palliative Care: A systematic review. Journal of Pain and Symptom Management
2009, 38, 145-156.
27. Pasman HR, Brandt HE, Deliens L, Francke AL. Quality indicators for palliative care:
a systematic review. Journal of Pain and Symptom Management 2009, 38(1):145-56.
28. Payne S, Leget C, Peruselli C, Radbruch L. Quality Indicators for palliative care:
debates and dilemmas. Palliative Medicine 2012, 26(5), 679-680.
29. Leemans K, Cohen J, Francke AL, Stichele RV, Claessen SJJ, Van den Block L,
Deliens L. Towards a standardised method of developing quality indicators for
palliative care: protocol of the Quality indicators for Palliative Care (Q-PAC) study.
BMC Palliative Care 2013, 12:6.
30. Health Improvement Scotland. Palliative and end of life care: Draft Quality Indicators,
31. Nelson JE, Mulkerin CM, Adams LL, Pronovost PJ. Improving comfort and
communication in the ICU: a practical new tool for palliative care performance
measurement and feedback. Qual Saf Health Care 2006, 15(4):264-271.
32. Peruselli C, Marinari M, Brivio B, Castagnini G, Cavana M, Centrone G, Magni C,
Merlini M, Scaccabarozzi GL, Paci E. Evaluating a home palliative care service:
development of indicators for a continuous quality improvement program. Journal of
Palliative Care 1997, 13(3):34-42.
33. Twaddle ML, Maxwell TL, Cassel JB, Liao S, Coyne PJ, Usher BM, Amin A, Cuny J.
Palliative care benchmarks from academic medical centers. Journal of Palliative
Medicine 2007, 10(1):86-98.
34. Raleigh VS, Foot C. Getting the measure of quality: opportunities and challenges.
The King’s Fund, 2010. London: The King’s Fund.
35. Council of Europe. Recommendation Rec (2003) 24 of the Committee of Ministers to
member states on the organization of palliative care.
36. Marshall MN, Campbell SA, Roland M, Hacker J. Quality Indicators for General
Practice: A Practical Guide for Primary Health Case Professionals And Managers.
Royal Society of Medicine Press Ltd: London, 2002.
37. SPPC Response to the HIS Consultation on Palliative and End of Life Care
Indicators, 2012. Scottish Partnership for Palliative Care.
38. Schag CC, Heinrich RL, Ganz PA. Karnofsky performance status revisited: Reliability,
validity, and guidelines. Journal of Clinical Oncology 1984, 2:187-193.
39. Garratt AM, Ruta DA, Abdalla MI, Russell IT. SF-36 health survey questionnaire: II.
Responsiveness to changes in health status in four common clinical conditions.
Quality in Health Care 1994, 3, 186-192.
40. Fitch K, Bernstein S, Aguilar M, Burnand B, LaCalle J, Lazaro P. The RAND/UCLA
Appropriateness Method User's Manual. Santa Monica, CA: RAND Corporation; 2001
41. Appraisal of Indicators through Research and Development (AIRE) Instrument.
Available from Accessed 12 March 2013
42. Claessen SJ, Francke AL, Belarbi HE. A new set of quality indicators for palliative
care: process and results of the development trajectory. Journal of Pain and
Symptom Management 2011, 42(2):169-82.
43. Gysels MH, Evans C, Higginson IJ. Patient, caregiver, health professional and
researcher views and experiences of participating in research at the end of life: a
critical interpretative synthesis of the literature. BMC Medical Research Methodology
2012, 12:123.
44. Kotter T, Schaefer FA, Scherer M, Blozik E. Involving patients in quality indicator
development – a systematic review. Patient Preference and Adherence 2013, 7, 259-


  • Protocol Palliative Care Day Services


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