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Abstract
Aims
The aim of the Danish Palliative Care Database (DPD) is to monitor, evaluate, and improve the clinical quality of specialized palliative care (SPC) (ie, the activity of hospital-based palliative care teams/departments and hospices) in Denmark.
Study population
The study population is all patients in Denmark referred to and/or in contact with SPC after January 1, 2010.
Main variables
The main variables in DPD are data about referral for patients admitted and not admitted to SPC, type of the first SPC contact, clinical and sociodemographic factors, multidisciplinary conference, and the patient-reported European Organisation for Research and Treatment of Cancer Quality of Life Questionaire-Core-15-Palliative Care questionnaire, assessing health-related quality of life. The data support the estimation of currently five quality of care indicators, ie, the proportions of 1) referred and eligible patients who were actually admitted to SPC, 2) patients who waited <10 days before admission to SPC, 3) patients who died from cancer and who obtained contact with SPC, 4) patients who were screened with European Organisation for Research and Treatment of Cancer Quality of Life Questionaire-Core-15-Palliative Care at admission to SPC, and 5) patients who were discussed at a multidisciplinary conference.
Descriptive data
In 2014, all 43 SPC units in Denmark reported their data to DPD, and all 9,434 cancer patients (100%) referred to SPC were registered in DPD. In total, 41,104 unique cancer patients were registered in DPD during the 5 years 2010–2014. Of those registered, 96% had cancer.
Conclusion
DPD is a national clinical quality database for SPC having clinically relevant variables and high data and patient completeness.
Acknowledgments
This paper was funded by the Program for Clinical Research Infrastructure (PROCRIN) established by the Lundbeck Foundation and the Novo Nordisk Foundation and administered by the Danish Regions. We thank all SPC institutions in Denmark for their contribution and collaboration. Further, we thank the DPD Board, representing the five regions in Denmark, for their work in the development of DPD and the continuing work to improve the database with clinically relevant data. The current members of the DPD Board are Lise Pedersen, Thomas Feveile, Helle Tingrupp, Per Sjøgren, Thor Schmidt, Mogens Grønvold, Bettina Kotasek, Lars Michael Clausen, Anne Marie Olsen, Mette Asbjørn Neergaard, Dorit Simonsen, Helle Bjørn Larsen, and Anette Agerbæk.
Disclosure
Mogens Groenvold is chairman of the DPD Board and Mathilde Adsersen and Maiken Bang Hansen, PhD students, work part time in the DPD Secretariat. The authors report no other conflicts of interest in this work.