Relative value of different outcomesThe GDG discussed the relevance of the various themes and acknowledged that the evidence synthesis provided a comprehensive overview of patients’ experiences.
The GDG recognised that having previously experienced many acute painful episodes, patients with sickle cell disease are experts in their condition and should be involved in treatment decisions. Healthcare professionals should ask the patient about their previous treatment regimens, to help identify the patient’s individual needs and assist in developing appropriate treatment plans for the current episode.
The GDG appreciated that patients admitted during an acute painful episode can sometimes have worries or concerns about the care they will be receiving. It was thought that involving the patient in discussions would help to reassure them and provide an opportunity to discuss any concerns. The GDG acknowledged that some patient concerns may be related to factors beyond their current episode. Engaging in appropriate discussions could therefore help healthcare professionals to identify any need to refer a patient to appropriate support services during their admission.
The GDG also discussed the relevance of providing information to patients at discharge. They acknowledged that some patients will be discharged from hospital while still continuing to experience the painful episode. These patients would therefore require appropriate information to help them to continue to manage their pain.
Appropriate details should include information relating to medication dispensing, as well as information to assist with any side effects of the medication. It was noted that patients discharged during a painful episode may also have support needs, especially if they have been using psychological or support services during their admission. These patients would therefore need information about specialised support services.
Trade off between benefits and harmsThe GDG recognised that there was a need to consider how information is provided to patients and carers. It was noted that there is a trade off regarding the need to provide information to patients and carers while at the same time making sure that the information is relevant and useful. Written information is useful as a reference point, but some patients may find written information difficult to understand.
There is also the possibility of legal issues surrounding the provision of information to family members.
Economic considerationsHealth economics were not considered for this review question.
Quality of evidenceThe GDG agreed that the evidence statements were a true reflection of the literature. It was noted that the quality of evidence was based upon the methodology checklists and the limitations were described.
Although some of the papers were over 18 years old and the issues raised were thought to be historical, the GDG acknowledged that the themes were representative of current factors. These issues were experienced across the board and were not limited to adult patients.
Other considerationsThe GDG recognised that the evidence synthesis provided indirect evidence about issues relating to the training of healthcare professionals, which could support recommendations made in response to other review questions (see for example section 2.4).
The GDG also acknowledged that evidence of the need for individualisation of care could support other recommendations.

From: 2, Evidence review and recommendations

Cover of Sickle Cell Acute Painful Episode
Sickle Cell Acute Painful Episode: Management of an Acute Painful Sickle Cell Episode in Hospital.
NICE Clinical Guidelines, No. 143.
Centre for Clinical Practice at NICE (UK).
Copyright © 2012, National Institute for Health and Clinical Excellence.

All rights reserved. This material may be freely reproduced for educational and not-for-profit purposes. No reproduction by or for commercial organisations, or for commercial purposes, is allowed without the express written permission of NICE.

NCBI Bookshelf. A service of the National Library of Medicine, National Institutes of Health.