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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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Patients' perspectives on information from physicians during palliative chemotherapy: A qualitative study.

https://arctichealth.org/en/permalink/ahliterature281233
Source
Palliat Support Care. 2016 10;14(5):495-502
Publication Type
Article
Date
10-2016
Author
Lisa Martinsson
Bertil Axelsson
Christina Melin-Johansson
Source
Palliat Support Care. 2016 10;14(5):495-502
Date
10-2016
Language
English
Publication Type
Article
Keywords
Adult
Aged
Drug Therapy - psychology
Female
Humans
Information Dissemination - methods
Male
Middle Aged
Neoplasms - complications - psychology
Palliative Care - psychology
Perception
Physician-Patient Relations
Qualitative Research
Sweden
Abstract
During the course of their disease, patients with cancer receiving palliative chemotherapy receive extensive amounts of information from physicians. The objective of our study was to describe patients' perspectives on the information they received from physicians during palliative chemotherapy with regard to their cancer diagnosis, treatments, prognosis, and future planning.
A total of 15 semistructured face-to-face interviews with patients who had incurable cancer were conducted, transcribed verbatim, and analyzed with qualitative content analysis.
Three categories were defined during the analytical process: "having a chronic disease," "depending on chemotherapy," and "living with an unpredictable future."
Our study demonstrated that patients undergoing palliative chemotherapy perceived that their disease was incurable and chronic, that they were dependent on chemotherapy, and that their future was uncertain. Compared with other studies, the patients in our study seemed to be more aware of their prognosis and the goals of care.
PubMed ID
26653583 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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