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Developing a national quality register in end-of-life care: The Swedish experience.

https://arctichealth.org/en/permalink/ahliterature101527
Source
Palliat Med. 2011 Jul 7;
Publication Type
Article
Date
Jul-7-2011
Author
Staffan Lundström
Bertil Axelsson
Per-Anders Heedman
Greger Fransson
Carl Johan Furst
Author Affiliation
Stockholms Sjukhem Foundation and Karolinska Institute, Stockholm, Sweden.
Source
Palliat Med. 2011 Jul 7;
Date
Jul-7-2011
Language
English
Publication Type
Article
Abstract
BACKGROUND: The complexity of end-of-life care, represented by a large number of units caring for dying patients, different types of organizations and difficulties in identification and prognostication, signifies the importance of finding ways to measure the quality of end-of-life care. AIM: To establish, test and manage a national quality register for end-of-life care. DESIGN: Two questionnaires were developed with an attempt to retrospectively identify important aspects of the care delivered during the last week in life. An internet-based IT platform was created, enabling the physician and/or nurse responsible for the care during the last week in life to register answers online. SETTING: Units caring for dying people, such as hospital wards, home care units, palliative in-patient care units and nursing facilities. RESULTS: The register received status as a National Quality Register in 2006. More than 30,000 deaths in nursing facilities, hospital wards, palliative in-patient units and private homes were registered during 2010, representing 34% of all deaths in Sweden and 58% of the cancer deaths. CONCLUSIONS: We have shown that it is feasible to establish a national quality register in end-of-life care and collect data through a web-based system. Ongoing data analyses will show in what way this initiative can lead to improved quality of life for patients and their families. There is an ongoing process internationally to define relevant outcome measures for quality of care at the end-of-life in different care settings; the registry has a potentially important role in this development.
PubMed ID
21737480 View in PubMed
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Does a half-day course about palliative care matter? A quantitative and qualitative evaluation among health care practitioners.

https://arctichealth.org/en/permalink/ahliterature114602
Source
J Palliat Med. 2013 May;16(5):496-501
Publication Type
Article
Date
May-2013
Author
Maria Friedrichsen
Per-Anders Heedman
Eva Åstradsson
Maria Jakobsson
Anna Milberg
Author Affiliation
Palliative Education and Research Center in the County of Östergötland, Vrinnevi Hospital, Norrköping, Sweden. maria.friedrichsen@liu.se
Source
J Palliat Med. 2013 May;16(5):496-501
Date
May-2013
Language
English
Publication Type
Article
Keywords
Adult
Education, Medical, Continuing - organization & administration
Educational Measurement
Female
Focus Groups
Humans
Interviews as Topic
Male
Middle Aged
Palliative Care
Questionnaires
Sweden
Abstract
To date there has been a paucity of research examining whether a course in palliative care influences the clinical work. Therefore a half-day course was started for different professionals.
The aims of this study were to quantitatively and qualitatively explore professionals' experience of the usefulness and importance of such a course.
An evaluation study was used with two measurement points in the quantitative part; qualitative focus group interviews were conducted three times.
Data was collected in Sweden through structured and open-ended questions (n=355) and in focus group discussions (n=40).
The majority of participants were allied professionals (86%). Course evaluation immediately after the intervention showed high scores. At three months, 78% of the 86 participants who had cared for a dying patient since the course claimed that the course had been useful in their work. In addition, there were improvements regarding symptom management (37%), support to family members (36%), more frequent break point conversations (31%), and improved cooperation in the teams (26%). The qualitative analysis showed that the course made participants start to compare their own working experiences with the new knowledge. When returning to work, the participants feel strengthened by the the newly acquired knowledge, but the will to improve the care also led to frustration, as some of the participants described that they wanted to change routines in the care of the dying, but felt hindered.
The course was appreciated and useful in the professionals' work, but it also created problems.
PubMed ID
23600332 View in PubMed
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Improved data validity in the Swedish Register of Palliative Care.

https://arctichealth.org/en/permalink/ahliterature287189
Source
PLoS One. 2017;12(10):e0186804
Publication Type
Article
Date
2017
Author
Lisa Martinsson
Per-Anders Heedman
Staffan Lundström
Bertil Axelsson
Source
PLoS One. 2017;12(10):e0186804
Date
2017
Language
English
Publication Type
Article
Keywords
Humans
Palliative Care
Registries
Sweden
Abstract
The Swedish Register of Palliative Care (SRPC) is a national quality register that collects data about end-of-life care from healthcare providers that care for dying patients. Data are used for quality control and research. Data are mainly collected with an end-of-life questionnaire (ELQ), which is completed by healthcare staff after the death of a patient. A previous validity assessment of the ELQ showed insufficient validity in some items including symptom relief. The aim of this study was to examine the validity of the revised ELQ.
Data from 100 consecutive patients' medical records at two specialised palliative care units were used to complete new ELQs, which were then compared to the ELQ registrations from the SRPC for the same patients. The level of agreement was calculated for each ELQ item. To account for the possibility of the agreement occurring by chance, Cohen's kappa was calculated for suitable items. To examine the extent of registration mistakes when transferring the paper form to the web, the original paper versions of the ELQ filled out at the units were compared to data from the ELQs reported to the SRPC.
Level of agreement between ELQ registrations from the SRPC and the new ELQs based on the medical records varied between 0.55 and 1.00, where 24 items showed level of agreement above 0.80 and 9 items showed level of agreement below 0.80. Cohen's kappa with 95% confidence intervals was calculated for 24 items. The kappa values showed that two items had poor agreement, four fair agreement, 11 moderate agreement, five good agreement and two very good agreement. The level of agreement varied between 0.93 and 1.00 when comparing the ELQ registrations in the SRPC and the paper forms.
The revised ELQ contains more items with high levels of agreement between registrations in the SRPC and notes in the patients' medical records when compared to the previous version. Validating issues around symptom assessment remains a challenge in our model of quality assessment.
Notes
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PubMed ID
29049396 View in PubMed
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Patterns of referral to a palliative care unit: an indicator of different attitudes toward the dying patient?

https://arctichealth.org/en/permalink/ahliterature191558
Source
J Palliat Med. 2002 Feb;5(1):101-6
Publication Type
Article
Date
Feb-2002
Author
Per-Anders Heedman
Hans Starkhammar
Author Affiliation
Palliative Advisory Team, Linköping University Hospital, Linköping, Sweden. per-anders.heedman@lio.se
Source
J Palliat Med. 2002 Feb;5(1):101-6
Date
Feb-2002
Language
English
Publication Type
Article
Keywords
Adult
Aged
Aged, 80 and over
Female
Hospitalization
Hospitals, University
Humans
Male
Middle Aged
Palliative Care - organization & administration - utilization
Physician's Practice Patterns
Referral and Consultation - utilization
Rehabilitation
Sweden
Terminal Care
Abstract
In 1996 a specialized palliative care unit was opened at the Linköping University Hospital in Sweden and different patterns of referral from different parts of the district soon became apparent. The aim of this study was to investigate the mechanisms underlying these patterns. During the first 6 months, 133 referrals were analyzed. The stated reason for referral and the actual content of care were, in each case, classified into five groups: symptom control, terminal care, rehabilitation, respite care, and special treatment and investigations. The stated reason for referral and the content of care coincided in three groups: terminal care, rehabilitation, and special treatment and investigations. When symptom control was the stated reason for referral, it was the main content of care in only 33 of 78 cases, while terminal care was the actual main content in 28 of 78 cases. Variations in patterns of referral were also observed in the different hospital-based home care teams (HBHC). In our study differences in the three HBHC teams regarding knowledge, skill, and attitudes might be reflected in variations in patterns of referral. The results illustrate the need for further education regarding referral indications, improvements in documentation of reason for referral, improved communication between HBHC teams and the palliative care unit, and improved prognostication at the end of life.
PubMed ID
11839232 View in PubMed
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Validation study of an end-of-life questionnaire from the Swedish Register of Palliative Care.

https://arctichealth.org/en/permalink/ahliterature136308
Source
Acta Oncol. 2011 Jun;50(5):642-7
Publication Type
Article
Date
Jun-2011
Author
Lisa Martinsson
Per-Anders Heedman
Staffan Lundström
Greger Fransson
Bertil Axelsson
Author Affiliation
Institution of Radiation Sciences, Umeå University, Sweden. lsaman04@student.umu.se
Source
Acta Oncol. 2011 Jun;50(5):642-7
Date
Jun-2011
Language
English
Publication Type
Article
Keywords
Humans
Medical Records - standards - statistics & numerical data
Palliative Care - methods - standards - statistics & numerical data
Quality of Health Care
Quality of Life
Questionnaires
Registries - statistics & numerical data
Sweden - epidemiology
Terminal Care - methods - standards - statistics & numerical data
Abstract
Quality in health care is important to measure and palliative care is no exception. The Swedish Register of Palliative Care (SRPC) is a national quality register that focuses on the last week of life. It collects data with an end-of-life questionnaire (ELQ), which is validated in this study.
This study included 169 consecutive patients who had died at a palliative unit. That unit had developed a computerized end-of-life medical record module that enabled a comparison between reported data and medical records, illustrating the validity of the registry questionnaire. The paper versions of the ELQs filled in at the unit were also inspected to determine the extent of registration mistakes when completing the web questionnaire.
Data from the medical records and data from the ELQs reported to the SRPC showed a congruity of 22 to 100%. A working limit of acceptable congruity was set to 80%. Eight questions fell below that line. Some of these differences were caused by systematic errors. The paper versions filled in at the unit and the data from the ELQs reported to the SRPC had a congruity of between 96% and 100%, with the exception of one question about pain evaluation, which had 91% congruity.
The results in this study will be used to improve and further develop the register. Some questions need to be more specific to promote more valid registrations. Consensus on quality issues in end-of-life care would simplify the work of writing and answering the questionnaire. It is desirable to perform a similar study at hospital wards that do not specialize in palliative care; however, the anticipated lack of palliative documentation could make such a study difficult to perform.
PubMed ID
21391772 View in PubMed
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6 records – page 1 of 1.