Research prioritisation exercises related to the care of children and young people with life-limiting conditions, their parents, and all those who care for them : a systematic scoping review

Background: In planning high quality research in any aspect of care for children and young people with life-limiting conditions it is important to prioritise resources in the most appropriate areas. Aim: To map research priorities identified from existing research prioritisation exercises relevant to infants, children, and young people with life-limiting conditions, in order to inform future research. Design: We undertook a systematic scoping review to identify existing research prioritisation exercises; the protocol is publicly available on the project website. Data sources: The bibliographic databases ASSIA, CINAHL, MEDLINE/MEDLINE In Process and Embase were searched from 2000. Relevant reference lists and websites were hand searched. Included were any consultations aimed at identifying research for the benefit of neonates, infants, children and/or young people (birth to age 25 years) with life-limiting, -threatening or -shortening conditions; their family, parents, carers; and/or the professional staff caring for them. Results: Twenty four research prioritisation exercises met the inclusion criteria, from which 279 research questions or priority areas for health research were identified. The priorities were iteratively mapped onto an evolving framework, informed by WHO classifications. This resulted in identification of 16 topic areas, 55 sub-topics and 12 sub-sub-topics. Conclusions: There are numerous similar and overlapping research prioritisation exercises related to children and young people with life-limiting conditions. By mapping existing research priorities in the context in which they were set, we highlight areas to focus research efforts on. Further priority setting is not required at this time unless devoted to ascertaining families’ perspectives

Research priorities for palliative and end-of-life care in the emergency setting

Palliative care focuses on the physical, spiritual, psychological, and social care from diagnosis to cure or death of a potentially life-threatening illness. When cure is not attainable and end of life approaches, the intensity of palliative care is enhanced to deliver the highest quality care experience. The emergency department (ED) frequently cares for patients and families during the end-of-life phase of the palliative care continuum. The intersection between palliative care and emergency care continues to be more clearly defined. Currently, there is a mounting body of evidence to guide the most effective strategies for improving palliative and end-of-life care in the ED. In a workgroup session at the 2009 Agency for Healthcare Research and Quality (AHRQ)/American College of Emergency Physicians (ACEP) conference “Improving the Quality and Efficiency of Emergency Care Across the Continuum: A Systems Approach,” four key research questions arose: 1) which patients are in greatest need of palliative care services in the ED, 2) what is the optimal role of emergency clinicians in caring for patients along a chronic trajectory of illness, 3) how does the integration and initiation of palliative care training and services in the ED setting affect health care utilization, and 4) what are the educational priorities for emergency clinical providers in the domain of palliative care? Workgroup leaders suggest that these four key questions may be answered by strengthening the evidence using six categories of inquiry: descriptive, attitudinal, screening, outcomes, resource allocation, and education of clinicians

Outpatient palliative medicine

The right to adequate outpatient palliative care has existed for several years in Germany. In recent years outpatient palliative care has developed very positively. Nevertheless, in emergency situations paramedics and emergency physicians were often included in the care of palliative care of patients. The aim of our study was to investigate the cooperation between outpatient palliative care teams and the emergency medical services. Another aim was to identify structural realities and based on these to discuss the possibilities in the optimization of outpatient palliative medical emergency situations. A standardized self-designed questionnaire was distributed to specialized outpatient palliative care teams (SPCS) in Germany. For this purpose, closed and open questions (mixed methods) were used. The evaluation was carried out according to the questionnaire categories in quantitative and qualitative forms. The questionnaire was subdivided into general information and specific questions. The survey response rate was 79% from a total of 81 SPCS in 2011. The following standards in palliative emergency care were recommended: (1) early integration of outpatient palliative care services and basic outpatient palliative care systems, (2) end-of-life discussions, (3) defined emergency medical documents, emergency drug boxes, do not attempt resuscitation orders and (4) emergency medical training (physicians and paramedics). Outpatient palliative care in Germany has developed very positively during the last years; however, there are still deficits in terms of optimal patient care, one of which refers to the treatment of palliative care emergencies. In this context, optimization in the cooperation between outpatient palliative care services and emergency medical services should be discussed