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

Research output: Chapter in Book/Report/Conference proceedingConference contribution

Abstract

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.
LanguageEnglish
Title of host publicationUnknown Host Publication
PagesNP67-NP67
Volume30
DOIs
Publication statusE-pub ahead of print - 11 May 2016

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day care
rating
expert
stakeholder
family member
experience

Keywords

  • Protocol Palliative Care Day Services

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Dempster, M., McCorry, N., O’Connor, S., Armour, K., Coast, J., Cohen, J., ... Perkins, P. (2016). UK Consensus Project on Quality in Palliative Care Day Services. In Unknown Host Publication (Vol. 30, pp. NP67-NP67) https://doi.org/10.1177/0269216316646056
Dempster, Martin ; McCorry, Noleen ; O’Connor, Sean ; Armour, Kathy ; Coast, Jo ; Cohen, J ; Donnelly, M ; Finucane, A ; Fyvie, J ; Jones, L ; Kernohan, WG ; Leemans, K ; Oxenham, D ; Perkins, P. / UK Consensus Project on Quality in Palliative Care Day Services. Unknown Host Publication. Vol. 30 2016. pp. NP67-NP67
@inproceedings{acb2d2fcb6c64260aee1834607783276,
title = "UK Consensus Project on Quality in Palliative Care Day Services",
abstract = "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.",
keywords = "Protocol Palliative Care Day Services",
author = "Martin Dempster and Noleen McCorry and Sean O’Connor and Kathy Armour and Jo Coast and J Cohen and M Donnelly and A Finucane and J Fyvie and L Jones and WG Kernohan and K Leemans and D Oxenham and P Perkins",
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: 219-227. 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: 874-882. 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- 309. 6 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, 2012. www.health improvementsscotland.org 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. www.coe.int/T/E/Social_Cohesion/Health/Recommendations/Rec(2003)24.asp 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 www.aire-instrument.com. 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. 7 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- 268.",
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}

Dempster, M, McCorry, N, O’Connor, S, Armour, K, Coast, J, Cohen, J, Donnelly, M, Finucane, A, Fyvie, J, Jones, L, Kernohan, WG, Leemans, K, Oxenham, D & Perkins, P 2016, UK Consensus Project on Quality in Palliative Care Day Services. in Unknown Host Publication. vol. 30, pp. NP67-NP67. https://doi.org/10.1177/0269216316646056

UK Consensus Project on Quality in Palliative Care Day Services. / Dempster, Martin; McCorry, Noleen; O’Connor, Sean; Armour, Kathy; Coast, Jo; Cohen, J; Donnelly, M; Finucane, A; Fyvie, J; Jones, L; Kernohan, WG; Leemans, K; Oxenham, D; Perkins, P.

Unknown Host Publication. Vol. 30 2016. p. NP67-NP67.

Research output: Chapter in Book/Report/Conference proceedingConference contribution

TY - GEN

T1 - UK Consensus Project on Quality in Palliative Care Day Services

AU - Dempster, Martin

AU - McCorry, Noleen

AU - O’Connor, Sean

AU - Armour, Kathy

AU - Coast, Jo

AU - Cohen, J

AU - Donnelly, M

AU - Finucane, A

AU - Fyvie, J

AU - Jones, L

AU - Kernohan, WG

AU - Leemans, K

AU - Oxenham, D

AU - Perkins, P

N1 - 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: 219-227. 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: 874-882. 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- 309. 6 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, 2012. www.health improvementsscotland.org 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. www.coe.int/T/E/Social_Cohesion/Health/Recommendations/Rec(2003)24.asp 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 www.aire-instrument.com. 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. 7 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- 268.

PY - 2016/5/11

Y1 - 2016/5/11

N2 - 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.

AB - 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.

KW - Protocol Palliative Care Day Services

UR - https://uir.ulster.ac.uk/34898/1/0927-1446262714.pdf

UR - https://uir.ulster.ac.uk/34898/1/0927-1446262714.pdf

U2 - 10.1177/0269216316646056

DO - 10.1177/0269216316646056

M3 - Conference contribution

VL - 30

SP - NP67-NP67

BT - Unknown Host Publication

ER -

Dempster M, McCorry N, O’Connor S, Armour K, Coast J, Cohen J et al. UK Consensus Project on Quality in Palliative Care Day Services. In Unknown Host Publication. Vol. 30. 2016. p. NP67-NP67 https://doi.org/10.1177/0269216316646056