Improved data validity in the Swedish Register of Palliative Care

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Martinsson, LisaUmeå universitet,Institutionen för strålningsvetenskaper,Department of Radiation Sciences, Umeå University, Umeå, Sweden (author)

Improved data validity in the Swedish Register of Palliative Care

Article/chapterEnglish2017

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2017-10-19
Public library science,2017
electronicrdacarrier

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LIBRIS-ID:oai:DiVA.org:umu-141815
https://urn.kb.se/resolve?urn=urn:nbn:se:umu:diva-141815URI
https://doi.org/10.1371/journal.pone.0186804DOI
http://kipublications.ki.se/Default.aspx?queryparsed=id:136900197URI
https://urn.kb.se/resolve?urn=urn:nbn:se:liu:diva-145034URI

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Language:English
Summary in:English

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SwePubSwePub

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Subject category:ref swepub-contenttype
Subject category:art swepub-publicationtype

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Introduction: 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. Materials and methods: 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. Results: 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. Conclusion: 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.

Subject headings and genre

MEDICIN OCH HÄLSOVETENSKAP Klinisk medicin Cancer och onkologi hsv//swe
MEDICAL AND HEALTH SCIENCES Clinical Medicine Cancer and Oncology hsv//eng
MEDICIN OCH HÄLSOVETENSKAP Hälsovetenskap Omvårdnad hsv//swe
MEDICAL AND HEALTH SCIENCES Health Sciences Nursing hsv//eng

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Heedman, Per-AndersPalliative Education and Research Center in the County of Östergötland, Vrinnevi Hospital, Norrköping, Sweden(Swepub:liu)n/a (author)
Lundström, StaffanKarolinska Institutet,Department of Palliative Medicine, Stockholms Sjukhem Foundation, Stockholm, Sweden; Department of Oncology-Pathology, Karolinska Institutet, Stockholm, Sweden (author)
Axelsson, BertilUmeå universitet,Institutionen för strålningsvetenskaper,Department of Radiation Sciences, Unit of Clinical Research Centre-Östersund, Umeå University, Umeå, Sweden(Swepub:umu)axbe0003 (author)
Umeå universitetInstitutionen för strålningsvetenskaper (creator_code:org_t)

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In:PLOS ONE: Public library science12:101932-6203

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By the author/editor: Martinsson, Lisa; Heedman, Per-And ...; Lundström, Staff ...; Axelsson, Bertil

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MEDICAL AND HEALTH SCIENCES: MEDICAL AND HEAL ...; and Clinical Medicin ...; and Cancer and Oncol ...

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