The first decade of the Danish Palliative Care Database: improvements and ongoing challenges in the quality and use of specialised palliative care
DOI:
https://doi.org/10.2340/1651-226X.2024.28515Keywords:
Palliative care team, hospice Care, database, quality indicator, non-cancer, cancerAbstract
Background: Danish Palliative Care Database comprises five quality indicators: (1) Contact with specialised palliative care (SPC) among referred patients, (2) Waiting time of less than 10 days, (3) Proportion of patients who died from (A) cancer or (B) non-cancer diseases, and had contact with SPC, (4) Proportion of patients completing the patient-reported outcome measure at baseline (EORTC QLQ-C15-PAL), and (5) Proportion of patients discussed at a multidisciplinary conference.
Purpose: To investigate changes in the quality indicators from 2010 until 2020 in cancer and non-cancer patients.
Patients/material: Patients aged 18+ years who died from 2010 until 2020.
Method: Register-based study with the Danish Palliative Care Database as the main data source. Indicator changes were reported as percentage fulfilment.
Results: From 2010 until 2020, the proportion of patients with non-cancer diseases in SPC increased slightly (2.5–7.2%). In 2019, fulfilment of the five indicators for cancer and non-cancer were: (1) 81% vs. 73%; (2) 73% vs. 68%; (3A) 50%; (3B) 2%; (4) 73% vs. 66%; (5) 73% vs. 65%. Whereas all other indicators improved, the proportion of patients waiting less than 10 days from referral to contact decreased. Differences between type of unit were found, mainly lower for hospice.
Interpretation: Most patients in SPC had cancer. All indicators except waiting time improved during the 10-year period. The establishment of the Danish Palliative Care Database may have contributed to the positive development; however, SPC in Denmark needs to be improved, especially regarding a reduction in waiting time and enhanced contact for non-cancer patients.
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References
Groenvold M, Adsersen M, Hansen MB. Danish palliative care database. Clin Epidemiol. 2016;8:637–43.
https://doi.org/10.2147/CLEP.S99468 DOI: https://doi.org/10.2147/CLEP.S99468
Lundström S, Axelsson B, Heedman PA, et al. Developing a national quality register in end-of-life care: the Swedish experience. Palliat Med. 2012;26(4):313–21.
https://doi.org/10.1177/0269216311414758 DOI: https://doi.org/10.1177/0269216311414758
Brunner S, Heckel M, Zenz D, et al. [Health- and disease-related data of inpatients in palliative care units of the Comprehensive Cancer Centers and other hospitals in comparison-data from the Hospice and Palliative Care Register]. Wien Med Wochenschr. 2022;172(7–8):172–80.
Rogers M, Meier DE, Heitner R, et al. The national palliative care registry: a decade of supporting growth and sustainability of palliative care programs. J Palliat Med. 2019;22(9):1026–31.
https://doi.org/10.1089/jpm.2019.0262 DOI: https://doi.org/10.1089/jpm.2019.0262
Currow DC, Allingham S, Yates P, et al. Improving national hospice/palliative care service symptom outcomes systematically through point-of-care data collection, structured feedback and benchmarking. Support Care Cancer. 2015;23(2):307–15.
https://doi.org/10.1007/s00520-014-2351-8 DOI: https://doi.org/10.1007/s00520-014-2351-8
Palliative Care Outcomes Registry [Internet]. 2024. [cited date: 2024 Jan 10]. Available from: https://www.hra.nhs.uk/planning-and-improving-research/application-summaries/research-summaries/a-palliative-care-outcomes-registry/
Hoefler JM, Vejlgaard TB. Something’s ironic in Denmark: an otherwise progressive welfare state lags well behind in care of patients at the end of life. Health Policy. 2011;103(2–3):297–304.
https://doi.org/10.1016/j.healthpol.2010.11.012 DOI: https://doi.org/10.1016/j.healthpol.2010.11.012
Vejlgaard TB, Sjogren P, Maagaard R. [Organisation and development of palliative care in Denmark]. Ugeskr Laeger. 2007;169(44):3737–40.
Hansen MB, Adsersen M, Grønvold M. Danish palliative care database annual report 2019. In Danish: Dansk Palliativ Database Årsrapport 2019. Copenhagen or København; DMCG-PAL; 2020.
Lynge E, Sandegaard JL, Rebolj M. The Danish National Patient Register. Scand J Public Health. 2011;39(7 Suppl):30–3.
https://doi.org/10.1177/1403494811401482 DOI: https://doi.org/10.1177/1403494811401482
DMCG-PAL [Internet]. 2021. [cited date: 2024 Feb 14]. Available from: http://www.dmcgpal.dk/866/danskpalliativdatabasedpd
Groenvold M, Petersen MA, Aaronson NK, et al. The development of the EORTC QLQ-C15-PAL: a shortened questionnaire for cancer patients in palliative care. Eur J Cancer. 2006;42(1):55–64.
https://doi.org/10.1016/j.ejca.2005.06.022 DOI: https://doi.org/10.1016/j.ejca.2005.06.022
NORDCAN [Internet]. 2021. [cited date: 2024 Feb 15]. Available from: http://www-dep.iarc.fr/NORDCAN/English/frame.asp
Helweg-Larsen K. The Danish Register of causes of death. Scand J Public Health. 2011;39(7 Suppl):26–9.
https://doi.org/10.1177/1403494811399958 DOI: https://doi.org/10.1177/1403494811399958
Timm H, Mikkelsen TB, Jarlbaek L. [Specialized palliative care in Denmark lacks capacity and accessibility]. Ugeskr Laeger. 2017;179(26):V02170094.
Radbruch L, Payne S. White paper on standards and norms for hospice and palliative care in Europe: part 2. Eur J Palliat Care. 2010;17(1):22–33.
Adsersen M, Thygesen LC, Neergaard MA, et al. Admittance to specialized palliative care (SPC) of patients with an assessed need: a study from the Danish palliative care database (DPD). Acta Oncol. 2017;56(9):1210–7.
https://doi.org/10.1080/0284186X.2017.1332425 DOI: https://doi.org/10.1080/0284186X.2017.1332425
Danish Health Authority. Recommendations for palliative care. In Danish: Anbefalinger for den palliative indsats 2017. Published by the Danish Health Authority: City: København or Copenhagen; 2017.
Luddington L, Cox S, Higginson I, et al. The need for palliative care for patients with non-cancer diseases: a review of the evidence. Int J Palliat Nurs. 2001;7(5):221–6.
https://doi.org/10.12968/ijpn.2001.7.5.12635 DOI: https://doi.org/10.12968/ijpn.2001.7.5.12635
Radbruch L, Payne S. White paper on standards and norms for hospice and palliative care in Europe: part 1. Eur J Palliat Care. 2009;16(6):278–89.
Abel J, Kellehear A, Karapliagou A. Palliative care-the new essentials. Ann Palliat Med. 2018;7(Suppl 2):S3–14.
https://doi.org/10.21037/apm.2018.03.04 DOI: https://doi.org/10.21037/apm.2018.03.04
Danish Regions [Internet]. 2024. [cited date: 2024 Feb 3]. Available from: https://www.regioner.dk/media/13753/positionspapir-for-udvikling-af-den-palliative-indsats-danske-regioner-august-2020.pdf
Committee for Cross-Disciplinary Palliative Care Collaboration [Internet]. 2024. [cited date: 2024 Jan 15]. Available from: https://www.dmcg.dk/dmcg-udvalg/udvalg-for-tvarfagligt-palliativt-samarbejde/
Nielsen DMB, Bilde L. Temarapport: Viden om kvalitet i kræftforløb. Rehabilitering og palliative indsatser i fobindelse med kræft. Kræftens Bekæmpelse; Copenhagen or København; 2021.
LæringsogKvalitetsteamsSpecialiseretPalliation [Internet]. 2024. [cited date: 2024 Jan 15]. Available from: https://kvalitetsteams.dk/laerings-og-kvalitetsteams/lkt-specialiseret-palliation
Rojas-Concha L, Hansen MB, Adsersen M, et al. Implementation of clinical guidelines in specialized palliative care-results from a national improvement project: a national register-based study. Palliat Med. 2023;37(5):749–59.
https://doi.org/10.1177/02692163231155977 DOI: https://doi.org/10.1177/02692163231155977
PRO Sekretatiatet. Basal palliation [Internet]. 2024. [cited date: 2024 Feb 1] Available from: https://pro-danmark.dk/da/pro-emner/basal-palliation
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Copyright (c) 2023 Mathilde Adsersen, Maiken Bang Hansen, Mette Asbjoern Neergaard, Per Sjøgren, Mai-Britt Guldin, Mogens Groenvold
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