Palliative care for children: methodology for the development of a national clinical practice guideline

Abstract

Background: Provision of paediatric palliative care for children with life-threatening or life-limiting conditions and their families is often complex. Guidelines can support professionals to deliver high quality care. Stakeholders expressed the need to update the first Dutch paediatric palliative care guideline with new scientific literature and new topics. This paper provides an overview of the methodology that is used for the revision of the Dutch paediatric palliative care guideline and a brief presentation of the identified evidence.

Methods: The revised paediatric palliative care guideline was developed with a multidisciplinary guideline panel of 72 experts in paediatric palliative care and nine (bereaved) parents of children with life-threatening or life-limiting conditions. The guideline covered multiple topics related to (refractory) symptom treatment, advance care planning and shared-decision making, organisation of care, psychosocial care, and loss and bereavement. We established six main working groups that formulated 38 clinical questions for which we identified evidence by updating two existing systematic literature searches. The GRADE (CERQual) methodology was used for appraisal of evidence. Furthermore, we searched for additional literature such as existing guidelines and textbooks to deal with lack of evidence.

Results: The two systematic literature searches yielded a total of 29 RCTs or systematic reviews of RCTs on paediatric palliative care interventions and 22 qualitative studies on barriers and facilitators of advance care planning and shared decision-making. We identified evidence for 14 out of 38 clinical questions. Furthermore, we were able to select additional literature (29 guidelines, two textbooks, and 10 systematic reviews) to deal with lack of evidence.

Conclusions: The revised Dutch paediatric palliative care guideline addresses many topics. However, there is limited evidence to base recommendations upon. Our methodology will combine the existing evidence in scientific literature, additional literature, expert knowledge, and perspectives of patients and their families to provide recommendations.

Keywords: Clinical practice guideline; Evidence-based medicine; Paediatric palliative care.

Fig. 1

Process of topic selection a Topics covered in the CPG for paediatric palliative care 2013 are: anxiety and depression; dyspnoea; haematological symptoms; coughing; skin complaints; nausea and vomiting; neurological symptoms; pain; death rattle; fatigue; decision making; and organisation of care.  b Suggestions for topics identified in the invitational conference and surveys are: delirium; refractory symptoms; psychosocial care; loss and bereavement; advance care planning; practicing communication skills; financing; and complementary care. c Reasons for removal from topic list are: practicing communication skills and financing are outside the scope of this CPG; and, complementary care will be covered in another CPG. d Topics covered in the revised CPG for paediatric palliative care are: anxiety and depression; delirium; dyspnoea; haematological symptoms; coughing; skin complaints; nausea and vomiting; neurological symptoms; pain; death rattle; fatigue; refractory symptoms; advance care planning and shared decision making; organisation of care; psychosocial care; and loss and bereavement.  e Newly added topics are: delirium; refractory symptoms; advance care planning and shared decision making; psychosocial care; and loss and bereavement.  f Topics of which the content will be refined: anxiety and depression; dyspnoea; haematological symptoms; coughing; skin complaints; nausea and vomiting; neurological symptoms; pain; death rattle; fatigue; and organisation of care

Fig. 2

Guideline working groups * Newly added in the revision of the Dutch Paediatric Palliative Care CPG

Fig. 3

Flowchart of the selection process of quantitative studies

Fig. 4

Flowchart of the selection process of qualitative studies *We only used the conclusions of evidence from the 11 identified studies in the search of the NICE guideline