Abstract
BackgroundThere is an increased interest in the analysis of large, national palliative care data sets including patient reported outcomes (PROs). No study has investigated if it was best to include or exclude data from services with low response rates in order to obtain the patient reported outcomes most representative of the national palliative care population. Thus, the aim of this study was to investigate whether services with low response rates should be excluded from analyses to prevent effects of possible selection bias.MethodsData from the Danish Palliative Care Database from 24,589 specialized palliative care admittances of cancer patients was included. Patients reported ten aspects of quality of life using the EORTC QLQ-C15-PAL-questionnaire. Multiple linear regression was performed to test if response rate was associated with the ten aspects of quality of life.ResultsThe score of six quality of life aspects were significantly associated with response rate. However, in only two cases patients from specialized palliative care services with lower response rates (< 20.0%, 20.0–29.9%, 30.0–39.9%, 40.0–49.9% or 50.0–59.9) were feeling better than patients from services with high response rates (≥60%) and in both cases it was less than 2 points on a 0–100 scale.ConclusionsThe study hypothesis, that patients from specialized palliative care services with lower response rates were reporting better quality of life than those from specialized palliative care services with high response rates, was not supported. This suggests that there is no reason to exclude data from specialized palliative care services with low response rates.
Highlights
There is an increased interest in the analysis of large, national palliative care data sets including patient reported outcomes (PROs)
Patients and data The Danish palliative database All specialized palliative care (SPC) services in Denmark deliver data to the Danish Palliative Database (DPD) on patients referred to their service
Patient information recorded in DPD includes diagnosis, socio-demographic factors, whether the patient has received SPC, and the symptom/problems and Quality of life (QOL) among patients admitted to SPC
Summary
There is an increased interest in the analysis of large, national palliative care data sets including patient reported outcomes (PROs). No study has investigated if it was best to include or exclude data from services with low response rates in order to obtain the patient reported outcomes most representative of the national palliative care population. There is increasing interest in the analysis of large, national data sets from palliative care with patient reported outcomes (PROs). The response rates varied to a large extent between the SPC services in Denmark This led to a dilemma: we were concerned that the data from palliative services with low response rate might be affected by selection bias (e.g., if fewer of the most symptomatic patients were included, the resulting scores would not be representative). If excluding services, where should the cutoff for exclusion be?
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