Table 2.
Selected studies per working group and clinical question
| Topic/clinical questiona | Selected studies from systematic literature searches | Selected additional literature |
|---|---|---|
| WG1 Symptom treatment | ||
| 1 Anxiety and depression: Non pharmacological interventions | - | 4 guidelines [18–21] |
| 2 Anxiety and depression: Pharmacological interventions | - | 1 textbook [22], 4 guidelines [18–21] |
| 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 [34–38] |
| 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 [43–49] | 4 guidelines [20, 41, 42, 50] |
| 17 Neurological symptoms: Non pharmacological interventions | - | 4 guidelines [51–54] |
| 18 Neurological symptoms: Pharmacological interventions | 2 RCTs [55, 56] | 5 guidelines [12, 51–54] |
| 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 [66–69] | 1 guideline [12] |
| 29 Barriers and facilitators of advance care planning and shared-decision making | 22 qualitative studies [70–91] 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 [99–108], 1 guideline [12] |
| 37 Experiences and needs of parents and health care providers | ||
| 38 Features of communicative and affective strategies | ||
aComplete clinical questions can be found in Appendix D
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