The 'surprise' question in paediatric palliative care: A prospective cohort study.

BACKGROUND: The question 'would you be surprised if this patient died in the next 12-months' is widely used for identifying adult patients in the last year of life. However, this has not yet been studied in children. AIM: To assess the prognostic accuracy of the surprise question when used by a multidisciplinary team to predict survival outcomes of children with life-limiting conditions over a 3 and 12 month period. DESIGN: A prospective cohort study. SETTING/PARTICIPANTS: Six multidisciplinary team members working in a children's hospice answered a 3 and 12 month surprise question about 327 children who were either newly referred or receiving care at the hospice between 2011 and 2013. RESULTS: The prognostic accuracy of the multidisciplinary team for the 3 (and 12)month surprise question were: sensitivity 83.3% (83.3%), specificity 93.2% (70.7%), positive predictive value 41.7% (23.6%), negative predictive value 99% (97.5%) and accuracy 92.6% (71.9%). Patients with a 'no' response had an increased risk of death at 3 (hazard ratio, 22.94, p ⩽ 0.001) and 12 months (hazard ratio, 6.53, p ⩽ 0.001). CONCLUSION: The surprise question is a highly sensitive prognostic tool for identifying children receiving palliative care who are in the last 3 and 12 months of life. The tool is accurate at recognising children during stable periods demonstrated through a high negative predictive value. In practice, this tool could help identify children who would benefit from specialist end of life care, act as a marker to facilitate communications on advance care planning and assist in resource allocation.

Moments of realization: life-limiting illness in childhood--perspectives of children, young people and families.

Changing patterns of childhood deaths and survival from once-fatal medical conditions mean that many children and their families face prolonged uncertainty combined with profound needs. Studies of children with life-limiting conditions tend to focus on the acute or terminal stage but rarely investigate the child's experience of chronic life threat over long periods of time. This article describes qualitative research focused on the experiences of 11 children and young people affected by life-limiting conditions. Parents and siblings were also vital contributors (39 participants from 10 families). The aim was to understand the perceptions and experiences of the child, and to frame that understanding with family insights. This study identified several 'moments of realization', representing times in the child's life when participants recognized the real threat to the child's life, these included: questions of inheritance, diagnosis and prognosis, acute loss of abilities, slow deterioration and life-threatening surgery.

A system of electronic records developed by a children's hospice.

This paper describes the development, implementation and dissemination of an electronic data collection system for children's hospices in the UK. In 1999, CHASE Hospice Care for Children (CHASE) began providing support for life-limited children and their families in their own homes across south-west London, Surrey and West Sussex. CHASE community team is multidisciplinary and original members of the team had to create all of the necessary administrative systems for collecting and storing information about referrals and care provided to children and their families. The community team had the foresight to record activity statistics from day one of the service. The team worked together to identify information routinely collected that could usefully be stored on a computer database and a simple solution was created for this purpose using Microsoft Access version 2. CHASE was in a privileged position because the commitment to use information technology came from people providing care to children and their families.