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Validation study of an end-of-life questionnaire from the Swedish register of palliative care
Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
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2011 (English)In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 50, no 5, 642-647 p.Article in journal (Refereed) Published
Abstract [en]

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.

Material and methods. 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.

Results. 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.

Discussion. 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.

Place, publisher, year, edition, pages
2011. Vol. 50, no 5, 642-647 p.
National Category
Cancer and Oncology
Identifiers
URN: urn:nbn:se:umu:diva-42307DOI: 10.3109/0284186X.2011.554434ISI: 000290631600005PubMedID: 21391772OAI: oai:DiVA.org:umu-42307DiVA: diva2:409097
Available from: 2011-04-07 Created: 2011-04-07 Last updated: 2017-12-11Bibliographically approved
In thesis
1. Quality improvement in palliative care: the role of a national quality register and perceptions of information during palliative chemotherapy
Open this publication in new window or tab >>Quality improvement in palliative care: the role of a national quality register and perceptions of information during palliative chemotherapy
2015 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Introduction

There is a need in palliative care for development of structured methods to assess quality and support improvement. This need is present both within and outside specialised palliative care.

Honest information from physicians is regarded as an important part of palliative care. Information about the transition to end-of-life care (ITEOL), conveyed by physicians to patients, has also been described as a ‘breakpoint conversation’.

Quality registers enable monitoring and improvement of quality of care, and clinical research. The Swedish Register of Palliative Care (SRPC) is a Swedish national quality register that collects data from hospitals, hospices, nursing homes and home care, with an end-of-life questionnaire (ELQ) about palliative care content focusing on the last week of life.

Aims

Study I – The aim was to examine the validity of the ELQ from the SRPC.

Study II – The aim was to examine whether participation in the SRPC increases the quality of palliative care over a three-year period regarding eight items in the ELQ.

Study III – The aim was to examine whether an educational intervention for physicians and nurses in nursing homes and hospitals increases the proportion of patients who receive ITEOL.

Study IV – The aim was to describe how patients with cancer perceive the information they receive from physicians during palliative chemotherapy.

Methods

Study I – Data from 100 medical records and data from the paper versions of the ELQ filled in at a specialised palliative unit were compared with data reported to the SRPC.

Study II – Data from eight items in the ELQ reported to the SRPC from all healthcare units that had reported patients continuously during a three-year period were compared year-by-year with logistic regression.

Study III – Two municipalities (in charge of nursing homes) and two hospitals were randomised to receive an interactive half-day course about ITEOL for physicians and nurses. Four hospitals and four municipalities were assigned matched controls. The proportion of patients who received ITEOL before and after the intervention was measured with the ELQ. The effect of the intervention was analysed with a multivariable logistic regression model.

Study IV – Fifteen semi-structured interviews with patients with incurable cancer were conducted, transcribed verbatim and analysed with qualitative content analysis.

Results

Study I – The questions in the ELQ showed a congruity of 22% to 100% when comparing data from medical records with data reported to the SRPC. Eight questions fell below 80%. The paper versions filled in at the unit and the data reported to the SRPC showed a congruity of between 91% and 100%.

Study II – The prevalence of six symptoms decreased. The prescription of PRN (pro re nata – ‘as needed’) medications for pain, nausea, anxiety and death rattle increased. A higher proportion of patients died in their place of preference. The patient’s next of kin was more often offered a follow-up appointment after the patient’s death. There was no change in the proportion of patients or next of kin who received ITEOL.

Study III – The proportion of patients in the intervention group who received ITEOL increased from 35.1% (during a six-month period before the intervention) to 42.0% (during a six-month period after the intervention). The proportion in the control group increased from 30.4% to 33.7%. The effect of the intervention was significant (p=0.005) in the multivariable model.

Study IV – Three categories were disclosed during the analytical process: ‘living with a death sentence’, ‘depending on chemotherapy’, and ‘living with uncertainty’.

Conclusions

A national quality register has the potential of contributing to quality improvement in palliative care. Study I showed varied validity in the ELQ, implying a need to modify the questionnaire. Study II showed that participation in the SRPC was covariant with quality improvements in end-of-life care over time. Study III showed that more patients received ITEOL after an educative half-day intervention directed to physicians and nurses. Study IV showed that patients undergoing palliative chemotherapy perceived that their disease was incurable and deadly, and that conditions for future treatment and survival were uncertain.

Place, publisher, year, edition, pages
Umeå: Umeå universitet, 2015. 99 p.
Series
Umeå University medical dissertations, ISSN 0346-6612 ; 1696
Keyword
Cancer, chemotherapy, communication, end-of-life care, oncology, palliative care, palliative medicine, quality in healthcare, quality register
National Category
Cancer and Oncology
Research subject
Oncology
Identifiers
urn:nbn:se:umu:diva-102264 (URN)978-91-7601-219-2 (ISBN)
Public defence
2015-05-22, Sal 135, byggnad 9a, Norrlands universitetssjukhus, Umeå, Umeå, 13:00 (Swedish)
Opponent
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Available from: 2015-04-30 Created: 2015-04-22 Last updated: 2015-04-30Bibliographically approved

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