The Paediatric Palliative Screening Scale: Further validity testing

Abstract

Background: Paediatric palliative care is still often introduced late in the illness trajectory of children with life-limiting diseases. Translating palliative care into practice continues to be a challenge. Aim: To validate the Paediatric Palliative Screening Scale further by defining attributes that predict the need for palliative care in children between 1 and 18 years. Design: Proportional-odds logistic regression analysis was performed to investigate the relationship between the attributes of the Paediatric Palliative Screening Scale and the experts’ assessment of case vignettes with various combinations of different attribute characteristics. Estimates from regression analysis were transformed to empirical weightings of the Paediatric Palliative Screening Scale attribute characteristics. Setting/participants: Online questionnaires with case vignettes were sent to 33 paediatric palliative care experts from Europe, the United States, Canada, Australia and New Zealand. Results: The highest weightings among the five previously defined attributes were estimated life expectancy <12 months (40% of maximum score) and preferences of the child/parents received (24%). Trajectory of disease and impact on daily activities of the child, expected outcome of treatment directed at the disease and burden of treatment, and symptom or problem burden were weighted less. Conclusions: According to this second step of psychometric testing of the Paediatric Palliative Screening Scale, the strongest and most urgent necessity indicators for a palliative care approach are life expectancy and child/family preferences. These results are somewhat discrepant with results from the previous validation of the instrument as well as previous research findings.