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Supplemental material, sj-pdf-1-pmj-10.1177_02692163211049309 for Pain assessment tools in paediatric palliative care: A systematic review of psychometric properties and recommendations for clinical practice by Adrienne YL Chan, Mengqin Ge, Emily Harrop, Margaret Johnson, Kate Oulton, Simon S Skene, Ian CK Wong, Liz Jamieson, Richard F Howard and Christina Liossi in Palliative Medicine

Supplemental material, sj-pdf-2-pmj-10.1177_02692163211049309 for Pain assessment tools in paediatric palliative care: A systematic review of psychometric properties and recommendations for clinical practice by Adrienne YL Chan, Mengqin Ge, Emily Harrop, Margaret Johnson, Kate Oulton, Simon S Skene, Ian CK Wong, Liz Jamieson, Richard F Howard and Christina Liossi in Palliative Medicine

Supplemental material, sj-pdf-1-pmj-10.1177_02692163211049309 for Pain assessment tools in paediatric palliative care: A systematic review of psychometric properties and recommendations for clinical practice by Adrienne YL Chan, Mengqin Ge, Emily Harrop, Margaret Johnson, Kate Oulton, Simon S Skene, Ian CK Wong, Liz Jamieson, Richard F Howard and Christina Liossi in Palliative Medicine

Supplemental material, sj-pdf-2-pmj-10.1177_02692163211049309 for Pain assessment tools in paediatric palliative care: A systematic review of psychometric properties and recommendations for clinical practice by Adrienne YL Chan, Mengqin Ge, Emily Harrop, Margaret Johnson, Kate Oulton, Simon S Skene, Ian CK Wong, Liz Jamieson, Richard F Howard and Christina Liossi in Palliative Medicine

Additional file 2. Interview guide for semi-structured interviews and tables 2–5 themes of variability, causality, decision making and impact.

Additional file 1. Data extraction form for case note review.

Background Children and young people are usually given liquid morphine by mouth for breakthrough pain, which can take thirty minutes to work. A faster-acting, quickly absorbed, needle-free pain medicine, that is easy to administer is needed such as transmucosal (sublingual, buccal, intranasal) diamorphine. Research evidence relating to the administration of medication for breakthrough pain in children and young people is limited. This study aims to describe the experiences and preferences of parents and/or children and young people regarding the route of administration of diamorphine, barriers and facilitators comparative to oral morphine, and participation in a randomised controlled trial. Methods In-depth, semi-structured interviews with parents and/or children and young people at home or hospital/hospice. Results Thirteen interviews with: nine mothers, one father, and three sets of parents jointly. No interviews took place with a child/young person. Most families had experience of the buccal route which was effective in ease of administration and time to control pain. The intranasal route was preferred by parents irrespective of experience. Parents’ willingness for their child to take part in a trial depended on the time commitment, their child’s pain trajectory and the stability of analgesic requirements. Conclusion A randomised controlled trial of oral morphine versus transmucosal diamorphine would need to consider trial logistics, especially time commitment. Parents felt that the trial should be introduced initially by the clinical team, with written information from the research team, and sufficient time to ask questions. Patients who had discontinued oral morphine because of side effects, or those with gastrointestinal failure, should be excluded. Maintaining stability in pain management was essential to families, so the timing of the trial is a potential issue.

Background: Oral morphine is frequently used for breakthrough pain but the oral route is not always available and absorption is slow. Transmucosal diamorphine is administered by buccal, sublingual or intranasal routes, and rapidly absorbed. Aim: To explore the perspectives of healthcare professionals in the UK caring for children with life-limiting conditions concerning the assessment and management of breakthrough pain; prescribing and administration of transmucosal diamorphine compared with oral morphine; and the feasibility of a comparative clinical trial. Design/ participants: Three focus groups, analysed using a Framework approach. Doctors, nurses and pharmacists ( n = 28), caring for children with life-limiting illnesses receiving palliative care, participated. Results: Oral morphine is frequently used for breakthrough pain across all settings; with transmucosal diamorphine largely limited to use in hospices or given by community nurses, predominantly buccally. Perceived advantages of oral morphine included confidence in its use with no requirement for specific training; disadvantages included tolerability issues, slow onset, unpredictable response and unsuitability for patients with gastrointestinal failure. Perceived advantages of transmucosal diamorphine were quick onset and easy administration; barriers included lack of licensed preparations and prescribing guidance with fears over accountability of prescribers, and potential issues with availability, preparation and palatability. Factors potentially affecting recruitment to a trial were patient suitability and onerousness for families, trial design and logistics, staff time and clinician engagement. Conclusions: There were perceived advantages to transmucosal diamorphine, but there is a need for access to a safe preparation. A clinical trial would be feasible provided barriers were overcome.