Improved data validity in the Swedish Register of Palliative Care

Abstract

IntroductionThe 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 methodsData 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.ResultsLevel 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.ConclusionThe 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.

Quality of end-of-life care in patients with dementia compared to patients with cancer: A population-based register study

“…Data are retrospective and reported by the healthcare service to the SRPC. The validity of the analysed items has been examined in a specialised palliative care setting [ 26 , 27 ], but not in other healthcare settings. It cannot be excluded that part of the measured differences between the groups are caused by different reporting patterns to the SRPC.…”

“…Stored data are matched weekly with the central population register for validation purposes [ 19 ]. The validity of the ELQ has been examined in a specialised palliative care setting and was shown to vary between different items, but with overall improvements in an updated version of the ELQ [ 26 , 27 ].…”

“…The following quality indicators based on items collected by the ELQ in the SRPC database were analysed: documented decision by the responsible physician to shift treatment/care to end-of-life care; pressure ulcers at death; assessment of oral health during the last week of life; someone present at the moment of death; information to next of kin about transition to end-of-life care; offer of a follow-up talk to next of kin after death of the patient; fluids via enteral tube or intravenously during the last 24 hours of life; assessment of pain and other symptoms during the last week of life; prescriptions of PRN drugs against pain, anxiety and nausea; and consultation of a specialised palliative care team during the last week of life. A robust validity for items about symptom prevalence and symptom alleviation has not been established in the SRPC [ 27 ], and these items were therefore not deemed suitable as quality indicators in this study. We did not include the item about place of death in line with the patient’s last stated wishes because of the uncertain nature of data collection for the dementia group for this item.…”

Quality of care for the dying across different levels of palliative care development: A population-based cohort study

“… 18 The SRPC started in 2005 and by 2015 had a national coverage of 66%, but with the final aim to include all dying people, regardless of diagnosis and care settings. 19 The SRPC is based on an end-of-life (EoL) questionnaire 20 inspired by the 11 principles constituting a good death and dying from British Geriatric Society guidelines. 21 The EoL questionnaire contains 30 questions out of which one is a structure, eight are process and eight are outcome indicators.…”

Dying With Unrelieved Pain—Prescription of Opioids Is Not Enough

“…The register is unique as it is not restricted to any specific care setting and comprises all causes of death. The validity of the register has been evaluated by Martinsson et al 31 who report difficulties with assessment of validity of symptoms and, in particular, symptom relief, as information in the medical records was often lacking. In addition, systematic misclassification due to different interpretations of items in the EoL questionnaire depending on where the death occurred, that is, based on the experience of the staff, cannot be ruled out.…”