Face and Content Validity, Acceptability, and Feasibility of the Adapted Version of the Children's Palliative Outcome Scale: A Qualitative Pilot Study.

Objective: To assess the face and content validity, acceptability and feasibility of a French version of the Children's Palliative Outcome Scale (CPOS). Background: Instruments in French used to measure outcomes in pediatric palliative care are lacking. Methods: After forward-backward translation of the 12-item English CPOS to French, we conducted a qualitative pilot study. During semi structured interviews among children and parents, we used the CPOS, the Schedule for the Evaluation of Individual Quality of Life interview guide (SEIQoL) and the Quality of Life in Life-threatening Illness-Family Carer questionnaire (QOLLTI-F), in addition to three expert meetings with PLTs. Results: Fourteen children and adolescents (8-18 years) with life-limiting or life-threatening conditions cared for at home, in hospital or in respite care services, 19 parents, and 9 members of 4 pediatric liaison teams (PLTs) providing palliative care in a Belgian francophone region were included in the study. No families refused to participate. All children with verbal capacities chose to be interviewed in the presence of their parents and a PLT member. The children valued being given the opportunity to share their experiences. New QOL dimensions pertaining to social, emotional, and administrative health-care related issues were added to the original version of the 12-item CPOS, leading to a 22-item CPOS-2. Discussion: The CPOS-2 was perceived as relevant and easy to use by the principal stakeholders. Our study paves the way for a large-scale field study assessing its psychometric characteristics and its implementation in routine clinical care.

Building Bridges, Paediatric Palliative Care in Belgium: A secondary data analysis of annual paediatric liaison team reports from 2010 to 2014.

BACKGROUND: Although continuity of care in paediatric palliative care (PPC) is considered to be an essential element of quality of care, it's implementation is challenging. In Belgium, five paediatric liaison teams (PLTs) deliver palliative care. A Royal Decree issued in 2010 provides the legal framework that defines the PLTs' missions, as ensuring continuity of curative and palliative care between the hospital and home for children diagnosed with life-limiting conditions. This national study describes how PLTs ensure continuity of care by describing their activities and the characteristics of the children they cared for from 2010 to 2014. METHODS: Thematic analysis of open-ended questions was performed and descriptive statistics of aggregated data issued from annual reports, collected by the Belgian Ministry of Public Health through the Cancer Plan was used. A review panel of PLT members discussed the results and contributed to their interpretation. RESULTS: Between 2010 and 2014, 3607 children and young adults (0-21 years) were cared for by the 5 Belgian PLTs (mean of 721/per year). Of these children, 50% were diagnosed with an oncological disease, 27% with a neurological or metabolic disease. Four hundred and twenty eight (428) children had died. For 51% of them, death took place at home. PLT activities include coordination; communication; curative and palliative care; education; research and fundraising. Different perceptions of what constitutes a palliative stage, heterogeneity in reporting diagnosis and the current lack of specific valid indicators to report PPC activities were found. CONCLUSION: PLTs are offering highly individualised, flexible and integrated care from diagnosis to bereavement in all care settings. Improvements in data registration and implementation of outcome measures are foreseen.