Objective: Patient-centered care is widely recognized as a crucial component of high-quality end-of-life care. As this approach remains limited in China, this study sought to develop quality measures specifically tailored to end-of-life care within the country. Methods: Initial indicators were established through a comprehensive review of existing measures. Using the modified Delphi Method, a two-round survey with experts (n = 14) was applied to evaluate the importance of each item. Results: The authoritative coefficient of two rounds of expert consultation was 0.86 and 0.87, and the Kendall coefficient of concordance for the two rounds was 0.232 and 0.270 (P < 0.001), respectively, demonstrating an acceptable consensus among the experts. As a result, 31 key quality indicators were identified and deemed important. Conclusions: This study developed a scale for patient-centered end-of-life care quality measurement in China, consisting of six dimensions and 31 indicators. This scale lays a solid foundation for quality improvement initiatives and future development of patient-centered end-of-life care.
America CoQoHCi. Crossing the quality chasm: a new health system for the 21st century. National Academies Press; 2001.
2.
FangCTanakaM. An exploration of person-centred approach in end-of-life care policies in England and Japan. BMC Palliat Care.2022;21(1):68. doi:10.1186/s12904-022-00965-w
3.
GravenVPetersenATimmH. Hospice care: Between existential and medical hope. Mortality. 2021;26(3):326–342. doi:10.1080/13576275.2020.1803249
4.
WilsonFIngletonCGottMGardinerC. Autonomy and choice in palliative care: Time for a new model?J Adv Nurs. 2014;70(5):1020–1029. doi:10.1111/jan.12267
5.
CohenJHermansKDupontCVan den BlockLDeliensLLeemansK. Nationwide evaluation of palliative care (Q-PAC study) provided by specialized palliative care teams using quality indicators: Large variations in quality of care. Palliat Med. 2021;35(8):1525–1541. doi:10.1177/02692163211019881
6.
ThomasKGrayM. Population-based, person-centred end-of-life care: Time for a rethink. Br J Gen Pract. 2018;68(668):116–117. doi:10.3399/bjgp18X694925
7.
HensonLAEdmondsPJohnstonA, et al.Population-based quality indicators for end-of-life cancer care: A systematic review. JAMA Oncol. 2020;6(1):142–150. doi:10.1001/jamaoncol.2019.3388
8.
EtkindSNDavesonBAKwokW, et al.Capture, transfer, and feedback of patient-centered outcomes data in palliative care populations: Does it make a difference? A systematic review. J Pain Symptom Manage. 2015;49(3):611–624. doi:10.1016/j.jpainsymman.2014.07.010
9.
Granda-CameronCViolaSRLynchMPPolomanoRC. Measuring patient-oriented outcomes in palliative care: Functionality and quality of life. Clin J Oncol Nurs. 2008;12(1):65–77. doi:10.1188/08.CJON.65-77
10.
TavaresAPDSPaparelliCKishimotoCS, et al.Implementing a patient-centred outcome measure in daily routine in a specialist palliative care inpatient hospital unit: An observational study. Palliat Med. 2017;31(3):275–282. doi:10.1177/0269216316655349
11.
KhanCPParverSKennedy LeschJ, et al.Comparative clinical effectiveness research focused on community-based delivery of palliative care: Overview of the patient-centered outcomes research institute's funding initiative. J Palliat Med. 2019;22(S1):2–6. doi:10.1089/jpm.2019.0370
12.
BuskmillerCHoSChenMGantsSCroweELopezS. Patient-centered perinatal palliative care: Family birth plans, outcomes, and resource utilization in a diverse cohort. Am J Obstet Gynecol MFM. 2022;4(6):100725. doi:10.1016/j.ajogmf.2022.100725
13.
BogetzJFJohnstonEEThienprayoonR, et al.Development of primary palliative care end-of-life quality measures: A modified Delphi process. Pediatrics. 2022;150(6):e2022058241. doi:10.1542/peds.2022-058241
14.
AnanthPMunSReffatN, et al.Refining patient-centered measures of end-of-life care quality for children with cancer. JCO Oncol Pract. 2022;18(3):e372–e382. doi:10.1200/OP.21.00447
15.
ZhengHChengQXuX, et al.Development of care quality indicators for palliative care in China: A modified Delphi method study. Asia Pac J Oncol Nurs. 2023;10(12):100324. doi:10.1016/j.apjon.2023.100324
16.
EubankBHMohtadiNGLafaveMR, et al.Using the modified Delphi method to establish clinical consensus for the diagnosis and treatment of patients with rotator cuff pathology. BMC Med Res Methodol. 2016;16(56):1–15. doi:10.1186/s12874-016-0165-8
17.
FinkAKosecoffJChassinMBrookRH. Consensus methods: Characteristics and guidelines for use. Am J Public Health. 1984;74(9):979–983. doi:10.2105/AJPH.74.9.979
18.
McGlincheyTEarlyRMasonS, et al.Updating international consensus on best practice in care of the dying: A Delphi study. Palliat Med. 2023;37(3):329–342. doi:10.1177/02692163231152523
19.
JüngerSPayneSABrineJRadbruchLBrearleySG. Guidance on conducting and REporting DElphi studies (CREDES) in palliative care: Recommendations based on a methodological systematic review. Palliat Med. 2017;31(8):684–706. doi:10.1177/0269216317690685
20.
RollisonJBandiniJIGilbertMPhillipsJAhluwaliaSC. Incorporating the patient and caregiver voice in palliative care quality measure development. J Pain Symptom Manage. 2022;63(2):293–300. doi:10.1016/j.jpainsymman.2021.08.001
21.
VogelCZwolinskySGriffithsCHobbsMHendersonEWilkinsE. A Delphi study to build consensus on the definition and use of big data in obesity research. Int J Obes (Lond). 2019;43(12):2573–2586. doi:10.1038/s41366-018-0313-9
22.
van VlietDCvan der MeijEBouwsmaEV, et al.A modified Delphi method toward multidisciplinary consensus on functional convalescence recommendations after abdominal surgery. Surg Endosc. 2016;30(12):5583–5595. doi:10.1007/s00464-016-4931-9
23.
ZhaoYHeLHuJ, et al.Using the Delphi method to establish pediatric emergency triage criteria in a grade A tertiary women’s and children’s hospital in China. BMC Health Serv Res. 2022;22(1):1154. doi:10.1186/s12913-022-08528-8
24.
EnglishJMKernanGL. The prediction of air travel and aircraft technology to the year 2000 using the Delphi method. Transp Res. 1976;10(1):1–8. doi:10.1016/0041-1647(76)90094-0
25.
LeeY-H. Spiritual care for cancer patients. Asia Pac J Oncol Nurs. 2019;6(2):101–103. doi:10.4103/apjon.apjon_65_18
26.
PringleJJohnstonBBuchananD. Dignity and patient-centred care for people with palliative care needs in the acute hospital setting: A systematic review. Palliat Med. 2015;29(8):675–694. doi:10.1177/0269216315575681
27.
SandsdalenTHovRHøyeSRystedtIWilde-LarssonB. Patients’ preferences in palliative care: A systematic mixed studies review. Palliat Med. 2015;29(5):399–419. doi:10.1177/0269216314557882
28.
KlarareAHagelinCLFürstCJFossumB. Team interactions in specialized palliative care teams: A qualitative study. J Palliat Med. 2013;16(9):1062–1069. doi:10.1089/jpm.2012.0622
29.
BainbridgeDBrazilKKruegerPPloegJTaniguchiA. A proposed systems approach to the evaluation of integrated palliative care. BMC Palliat Care. 2010;9(8):1–12. doi:10.1186/1472-684X-9-8
30.
WuY. Pain talk in hospice care: A conversation analysis. BMC Palliat Care. 2020;19(1):1–8. doi:10.1186/s12904-020-00625-x
31.
Errasti-IbarrondoBPerezMCarrascoJMLamaMZaragozaAArantzamendiM. Essential elements of the relationship between the nurse and the person with advanced and terminal cancer: A meta-ethnography. Nurs Outlook. 2015;63(3):255–268. doi:10.1016/j.outlook.2014.12.001
32.
BelangerERodríguezCGroleauD. Shared decision-making in palliative care: A systematic mixed studies review using narrative synthesis. Palliat Med. 2011;25(3):242–261. doi:10.1177/0269216310389348
33.
WallingAMAstKHarrisonJM, et al.Patient-reported quality measures for palliative care: The time is now. J Pain Symptom Manage. 2023;65(2):87–100. doi:10.1016/j.jpainsymman.2022.11.001
34.
WitkampEDrogerMJanssensRvan ZuylenLvan der HeideA. How to deal with relatives of patients dying in the hospital? Qualitative content analysis of Relatives’ experiences. J Pain Symptom Manage. 2016;52(2):235–242. doi:10.1016/j.jpainsymman.2016.02.009
35.
HudsonPRemediosCZordanR, et al.Guidelines for the psychosocial and bereavement support of family caregivers of palliative care patients. J Palliat Med. 2012;15(6):696–702. doi:10.1089/jpm.2011.0466
36.
LoM-LHuangC-CHuT-H, et al.Quality assessments of end-of-life care by medical record review for patients dying in intensive care units in Taiwan. J Pain Symptom Manage. 2020;60(6):1092–1099.e1. doi:10.1016/j.jpainsymman.2020.07.002
37.
WoithaKVan BeekKAhmedN, et al.Development of a set of process and structure indicators for palliative care: The Europall project. BMC Health Serv Res. 2012;12(381):1–12. doi:10.1186/1472-6963-12-381
38.
ZhengNTMukamelDBRokoskeFSMorleyMZepedaSAldridgeMD. Have hospice costs increased after implementation of the hospice quality–reporting program?J Pain Symptom Manage. 2019;58(1):48–55.e1. doi:10.1016/j.jpainsymman.2019.03.013
39.
Millington-SandersCNobleB. New UK general practice core standards for advanced serious illness and end of life care. Br J Gen Pract. 2018;68(668):114–115. doi:10.3399/bjgp18X694913
40.
HeMO'ConnorSJQuHMenachemiNTuckerRShewchukRM. Systematic review of the hospice performance literature. Health Care Manage Rev. 2020;45(4):E23–E34. doi:10.1097/HMR.0000000000000258
41.
BaschE. Patient-reported outcomes-harnessing patients’ voices to improve clinical care. N Engl J Med. 2017;376(2):105–108. doi:10.1056/NEJMp1611252
42.
HigashiTShekellePGAdamsJL, et al.Quality of care is associated with survival in vulnerable older patients. Ann Intern Med. 2005;143(4):274–281. doi:10.7326/0003-4819-143-4-200508160-00008
43.
PaleyCAKeshwalaVFarfan ArangoMHodgsonEChapmanEJBirtwistleJ. Evaluating provision of psychological assessment and support in palliative care: A national survey of hospices in England. Prog Palliat Care. 2024;32(1):11–21. doi:10.1080/09699260.2023.2286418
44.
HoergerMGreerJAJacksonVA, et al.Defining the elements of early palliative care that are associated with patient-reported outcomes and the delivery of end-of-life care. J Clin Oncol. 2018;36(11):1096–1102. doi:10.1200/JCO.2017.75.6676
45.
HillN. Use of quality-of-life scores in care planning in a hospice setting: A comparative study. Int J Palliat Nurs. 2002;8(11):540–547. doi:10.12968/ijpn.2002.8.11.10896
46.
McGuireDBReifsnyderJSoekenKKaiserKSYeagerKA. Assessing pain in nonresponsive hospice patients: Development and preliminary testing of the multidimensional objective pain assessment tool (MOPAT). J Palliat Med. 2011;14(3):287–292. doi:10.1089/jpm.2010.0302
47.
McCorryNKO’ConnorSLeemansK, et al.Quality indicators for palliative day services: A modified Delphi study. Palliat Med. 2019;33(2):197–205. doi:10.1177/0269216318810601
48.
LindSAdolfssonJAxelssonB, et al.Quality indicators for palliative and end of life care: A review of Swedish policy documents. BMJ Support Palliat Care. 2013;3(2):174–180. doi:10.1136/bmjspcare-2012-000390
49.
LiLB. Clinical review: Ethics and end-of-life care for critically ill patients in China. Crit Care. 2013;17(6):1–5. doi:10.1186/cc13140
50.
LingMWangXMaYLongY. A review of the current state of hospice care in China. Curr Oncol Rep. 2020;22(10):1–7. doi:10.1007/s11912-020-00959-y
51.
LengAMaitlandEWangSNicholasSLanKWangJ. Preferences for end-of-life care among patients with terminal cancer in China. JAMA Netw Open. 2022;5(4):e228788–e228788. doi:10.1001/jamanetworkopen.2022.8788
52.
YinZLiJMaK, et al.Development of palliative care in China: A tale of three cities. Oncologist. 2017;22(11):1362–1367. doi:10.1634/theoncologist.2017-0128
53.
TappDChenacherSGerardNPA, et al.Observational pain assessment instruments for use with nonverbal patients at the end-of-life: A systematic review. J Palliat Care. 2019;34(4):255–266. doi:10.1177/0825859718816073
