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Table 2 Selected studies per working group and clinical question

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

Topic/clinical questiona

Selected studies from systematic literature searches

Selected additional literature

WG1 Symptom treatment

 1 Anxiety and depression: Non pharmacological interventions

 -

4 guidelines [18,19,20,21]

 2 Anxiety and depression: Pharmacological interventions

 -

1 textbook [22], 4 guidelines [18,19,20,21]

 3 Delirium: Non pharmacological interventions

 -

2 guidelines [12, 23]

 4 Delirium: Pharmacological interventions

 5 Dyspnoea: Non pharmacological interventions

2 RCTs [24, 25]

2 guidelines [20, 26]

 6 Dyspnoea: Pharmacological interventions for dyspnoea

 -

 7 Haematological symptoms: Pharmacological interventions for anaemia

2 RCTs [27, 28]

1 textbook [29], 2 guidelines [30, 31]

 8 Haematological symptoms: Pharmacological interventions for thrombocytopenia

 -

2 guidelines [30, 32]

 9 Haematological symptoms: Pharmacological interventions for haemorrhages

 -

 10 Haematological symptoms: Pharmacological interventions for thrombosis

 -

-

 11 Coughing: Non pharmacological interventions

 -

1 guideline [33]

 12 Coughing: Pharmacological interventions

 13 Skin complaints: Non pharmacological interventions (pressure ulcers and itching)

 -

5 guidelines [34,35,36,37,38]

 14 Skin complaints: Pharmacological interventions (pressure ulcers and itching)

1 RCT [39]

 15 Nausea vomiting: Non pharmacological interventions

1 RCT [40]

2 guidelines [41, 42]

 16 Nausea vomiting: Pharmacological interventions

7 RCTs [43,44,45,46,47,48,49]

4 guidelines [20, 41, 42, 50]

 17 Neurological symptoms: Non pharmacological interventions

 -

4 guidelines [51,52,53,54]

 18 Neurological symptoms: Pharmacological interventions

2 RCTs [55, 56]

5 guidelines [12, 51,52,53,54]

 19 Pain: Non pharmacological interventions

1 SR of RCTs [57]

1 guideline [58]

 20 Pain: Pharmacological interventions

2 SR of RCTs [59, 60]

1 guideline [12]

 21 Death rattle: Non pharmacological interventions

 -

2 guidelines [12, 61]

 22 Death rattle: Pharmacological interventions

 23 Fatigue: Non pharmacological interventions

 -

2 guidelines [62, 63]

 24 Fatigue: Pharmacological interventions

1 guideline [62]

WG2 Refractory symptom treatment

 25 Palliative sedation

 -

2 textbooks [22, 29], 1 guideline [64]

 26 Palliative sedation in children with severe disabilities

-

 27 Forgoing hydration and nutrition

 -

2 textbooks [22, 29], 2 guidelines [12, 65]

WG3 Advance care planning and shared decision-making

 28 Advance care planning interventions

4 RCTs [66,67,68,69]

1 guideline [12]

 29 Barriers and facilitators of advance care planning and shared-decision making

22 qualitative studies [70,71,72,73,74,75,76,77,78,79,80,81,82,83,84,85,86,87,88,89,90,91] b

 

WG4 Organisation of care

 30 Organisational interventions

 -

1 guidelines [12]

WG5 Psychosocial care

 31 Psychological interventions for children

1 SR of RCTs [92], 2 RCTs [93, 94]

1 guideline [12]

 32 Psychological interventions for parents, and family members

2 SRs of RCTs [57, 92], 1 RCT [95]

 33 Social and practical support for children, parents, and family members

 -

 34 Cultural, spiritual, and religious support for children, parents, and family members

2 RCTs [96, 97]

WG6 Loss and bereavement

 35 Bereavement care interventions for children, parents, and family members

1 RCT [98]

1 guideline [12]

 36 Components of bereavement care interventions

 -

10 SRs [99,100,101,102,103,104,105,106,107,108], 1 guideline [12]

 37 Experiences and needs of parents and health care providers

 38 Features of communicative and affective strategies

  1. aComplete clinical questions can be found in Appendix D
  2. bConclusions of evidence from 11 studies on barriers and facilitators of ACP and shared decision making of the NICE guideline ‘End of life care for infants, children and young people with life-limiting conditions (2016)’ were used