Background

The Swedish Register of Palliative Care (SRPC) is a national quality register that contributes to research and development of palliative care in Sweden. The register started in 2005 and is built on an end-of-life questionnaire (ELQ) with 30 questions that is answered by responsible staff after the death of a patient. The questions reflect quality of care delivered during the last week in life and is based on the principles of a good death proposed by the British Geriatrics Society. Collected data is used for research, projects involving development and quality as well as local audits.

Validity and accuracy of collected data is of outmost importance and therefore the initial focus of research within the register has been on validity. Based on these results several revisions of the ELQ has been made and we are currently using the sixth version. We have also studied the impact of register participation on quality of end-of-life care, effects of interventions at hospitals and nursing homes, as well as differences in care content between different diagnostic groups, different age groups and different care settings. Scientific papers using data from the register have been published in peer-reviewed journals, see publication list..

As a complement to the ELQ, several care units are currently using a questionnaire developed by the register to assess how relatives/families perceived the quality of care during the last week in life of their loved ones.

Data requests

Data from the SRPC can be used by external research groups after decision in the register management group. Research that is mainly based on data from SRPC implicates involvement of a representative from the management group during the whole research process, including co-authorship.
Data can also be used for local development, quality projects or audit, and the register appreciates if information about accomplished projects is sent to the register office or research representatives.
The SRPC provides public access to online data through the homepage. Data requests that go beyond what is accessible through the homepage are administered through a special form via the register office and subsequently processed by the research manager before decision in the management group link to application form. Approved data requests that include personal identification numbers will be delivered through encrypted data transfer or a registered letter.

Citation

Reference to information retrieved from the homepage: ” The Swedish Register of Palliative Care (SRPC), www.palliativ.se

Contacts

Responsible for research and development:
Staffan Lundström, Research manager
*protected email*

Lisa Martinsson, researcher
*protected email*