Scottish Palliative Care Clinical Guidelines 7 June 2012
Scottish Palliative Care Guidelines – Background Information Including Review and Development Methodology
Scope and Purpose of the Guidelines The purpose of the Scottish Palliative Care Guidelines is to provide, in readily usable format, practical, evidence-based guidance on a range of clinical issues which occur commonly in adult patients with life limiting illness. The intended primary audience for the guidelines is generalist health care practitioners.
Stakeholder Engagement The Scottish Palliative Care Guidelines reflect a consensus of opinion about good practice in the management of adult patients with life limiting illness. They have been developed by a multidisciplinary group of professionals working in the community, hospital and specialist palliative care services.
Membership of the Project Steering Group and Topic Sub Groups is contained in Appendix 1.
Professional groups represented in the development of the Guidelines included:-
Palliative medicine physicians
Palliative care clinical nurse specialists
Palliative care specialist pharmacists
Respiratory physicians
General Practitioners
District nurses
Librarians/Knowledge Managers
Physiotherapists
Care Home Managers
A web survey of target users was conducted exploring preferences for format, level of detail, usability and modes of access to the Guidelines. Scottish Palliative Care Clinical Guidelines 7 June 2012
Identification of Topics The range of Guideline topics was based on topics previously identified by the “Lothian Guideline Project”, which drew on opinion from around half of Scotland’s NHS Boards. In addition in 2009/10 a Short Life Working Group under the auspices of the Scottish Government’s action plan on palliative and end of life care, Living and Dying Well, carried out a mapping of topics of guidelines in use in Scotland. A consensus exercise based on this survey involving all of Scotland’s NHS Boards identified a list of 29 core topics which form the basis of these Guidelines. Some of these topics were covered by guidelines which had already been developed elsewhere and this work was not duplicated.
Patient and Public Involvement The Project Steering Group included 1 lay member.
Drafts of the Guidelines were made available for comment to relevant patient representative groups via the Scottish Partnership for Palliative Care.
Patient/family information was developed together with NHS Inform for each of the guideline topics. These were also made available for comment to relevant patient representative groups via the Scottish Partnership for Palliative Care.
Method of Development and Review The process of developing the Guidelines has been designed to meet, so far as feasible, the requirements of the AGREE II criteria. Appendix 2 sets out explicitly how the project has sought to address each of the relevant domains and criteria contained in the AGREE II framework.
To ensure consistency of approach across the topic Sub-Groups a decision-making algorithm was developed and this is shown in Appendix 3. A checklist and style guide was also used by each subgroup and this is shown in Appendix 4. Templates for user friendly presentation of pharmacological and symptom control guidelines were adopted and are shown in Appendix 5 and 6 respectively.
Evidence Search Appendix 7 shows the process applied to source the evidence and the list of resources used in the development of the guidelines, in conjunction with the decision making algorithm. Scottish Palliative Care Clinical Guidelines 7 June 2012
Due to resource constraints the development process concentrated on a limited number of key sources of evidence.
Formulation of Recommendations and Resolutions of Differences of Opinion Recommendations in the guidelines are based on discussion and development of consensus. Where there was difficulty in achieving consensus within a topic subgroup the points of difference were discussed at the Project Steering Group with the aim of achieving consensus, but with the options of resolution through voting or the documentation of persisting difference of opinion available.
External Review At final draft stage each guideline was made available for public comment through NHS and SPPC networks.
Procedure for Update tbc
Presentation and Dissemination The Guidelines are available at www.tbc.net. An app is also available to allow access via mobile device.
Editorial Independence The guideline review and development project was co-ordinated by the Scottish Partnership for Palliative Care, an independent Scottish Charity.
A register of interests was maintained for the Steering Group and topic Sub-Groups. Scottish Palliative Care Clinical Guidelines 7 June 2012
Appendix 1 Membership of Project Steering Group and Topic Sub-Groups APPENDIX 1
Name Job Title Employing Organisation
Paul Baughan (Co-Chair) GP NHS Forth Valley
Steven Beaven GP NHS Orkney
David Binyon Primary Care Development NHS Fife Pharmacist
Derek Blues Policy Manager Scottish Partnership for Palliative Care
Penny Bond Clinical Development & Healthcare Improvement Improvement Team Leader Scotland - Adult Services
Kirsty Boyd Consultant in Palliative NHS Lothian Medicine
Gordon Canning Consultant in Palliative NHS Lanarkshire Medicine
Gill Chadwick Macmillan Lead Cancer NHS Western Isles Nurse
Paul Cormie GP NHS Borders
Fiona Downs Consultant in Palliative NHS Forth Valley Medicine
Helen Dryden Palliative Care Clinical Lead NHS Tayside Angus CHP
Rosalie Dunn GP NHS Lanarkshire
Eileen Grant Pharmacist NHS Grampian
Helen Grant Home Manager HC-One
David Gray (Co-Chair) Consultant in Palliative NHS Greater Glasgow & Medicine Clyde Scottish Palliative Care Clinical Guidelines 7 June 2012
Name Job Title Employing Organisation
Mark Hazelwood Director Scottish Partnership for Palliative Care
Annabel Howell Speciality Doctor in NHS Borders Palliative Medicine
Shirley Kelly Pharmacist NHS Tayside
Helen Kinnaird Home Manager Care UK
Alison Liddell Macmillan CNS NHS Highland
Alison MacRobbie Palliative & Community NHS Highland Care Pharmacist
Sandra McConnell Consultant in Palliative NHS Lanarkshire Medicine
Alistair McKeown Consultant in Palliative NHS Greater Glasgow & Medicine Clyde
Tim Morgan Consultant in Palliative NHS Grampian Medicine
Ruth Morrison Associate Specialist in NHS Dumfries & Galloway Palliative Care
Kirsty Muirhead Senior Pharmacist NHS Ayrshire & Arran
Sheena Scragg Consultant in Palliative NHS Fife Medicine
Louise Shakespeare Macmillan CNS NHS Highland
Claire Sharpe Macmillan CNS NHS Dumfries & Galloway
Jennifer Smith Pharmacist NHS Borders
Fiona Sneddon Senior Macmillan CNS NHS Lothian
Martin Wilson Consultant Physician NHS Highland
Alison Winning Senior Health Information Healthcare Improvement Scientist Scotland Scottish Palliative Care Clinical Guidelines 7 June 2012
Sub-Group 1
Pain
Sheena Scragg, Co-Chair
Fiona Sneddon, Co-Chair
David Binyon Primary Care Development Pharmacist
Susie Chater Consultant in Palliative Medicine
Julie Fisher Palliative Care Pharmacist
Tom Middlemass ST3 Palliative Medicine
Debbie Strachan GP
Fiona Taylor Charge Nurse
Lorraine Wilson Community Palliative Care Team Leader
Sub-Group 2
GI
Alison MacRobbie, Co-Chair
Tim Morgan, Co-Chair
David Babb
Gill Chadwick Macmillan Lead Cancer Nurse
Eileen Grant Pharmacist
Kathryn Hamling
Lucy Heycock Macmillan Clinical Nurse Specialist
Jeremy Keen Consultant in Palliative Medicine
Louise Shakespeare Macmillan CNS
Mandi Smith
Sub-Group 3
End of Life and Emergency
Rosalie Dunn, Co-Chair
Sandra McConnell, Co-Chair
Gordon Canning Consultant in Palliative Medicine Scottish Palliative Care Clinical Guidelines 7 June 2012
Elizabeth Ferguson
Joe Harrison Palliative Care Pharmacist
Alistair McKeown Consultant in Palliative Medicine
Helen Morrow
Sub-Group 4
Psychological and miscellaneous
Kirsty Muirhead, Co-Chair
Claire Sharpe, Co-Chair
Annabel Howell Speciality Doctor in Palliative Medicine
Helen Mackay
Peigi Mackay
Colin Walker Specialist Palliative Care Nurse
Sub-Group 5
Respiratory
Derek Blues, Co-Chair
Shirley Kelly, Co-Chair
Jane Andrews Macmillan Nurse Facilitator / Community Macmillan Nurse
Steven Beaven GP
Fiona Downs Consultant in Palliative Medicine
Helen Dryden Palliative Care Clinical Lead Angus CHP
Jean Gow Physiotherapist
Helen Kinnaird Home Manager
Diane Lambert
Alison Liddell Macmillan CNS
Stan Wright Consultant Respiratory Physician & Lead Cancer Clinician
Sub-Group 6
Web Design and Technologies
Kirsty Boyd, Co-Chair Scottish Palliative Care Clinical Guidelines 7 June 2012
David Gray, Co-Chair
Tim Morgan, Co-Chair Scottish Palliative Care Clinical Guidelines 7 June 2012
Appendix 2 Compliance with AGREE II Framework AGREE II Requirement How the requirement is met Domain 1 - SCOPE AND PURPOSE 1. The overall objective (s) of the guideline is (are) Described in this document and on web home page specifically described. 2. The health question(s) covered by the guideline is Described in this document and on web home page. Also described for each (are) specifically described. guideline as part of background information on development (see appendix 4) 3. The population (patients, public, etc.) to whom Described in this document and on web home page. Also described for each the guideline is meant to apply is specifically guideline as part of background information on development (see appendix 4) described.
Domain 2 – STAKEHOLDER ENGAGEMENT 4. The guideline development group includes individuals Appropriate steering group and sub group membership (see appendix 1) from all relevant professional groups. 5. The views and preferences of the target population Lay members onto steering group. SPPC National charities group members (patients, public, etc.) have been sought. invited to comment. 6. The target users of the guideline are clearly defined. Described in this document and on web home page. Specific reference where relevant in individual guidelines (see appendix 4)
Domain 3 – RIGOUR OF DEVELOPMENT 7. Systematic methods were used to search for evidence. See appendix 7 8. The criteria for selecting the evidence are clearly described. 9. The strengths and limitations of the body of evidence are Described for each guideline. See appendix 4 clearly described. 10. The methods for formulating the recommendations are Informal consensus arrived at through discussion. clearly described. 11. The health benefits, side effects, and risks have been This is documented in the background information relating to each individual Scottish Palliative Care Clinical Guidelines 7 June 2012
AGREE II Requirement How the requirement is met considered in formulating the recommendations. guideline 12. There is an explicit link between the recommendations This is documented in the background information relating to each individual and the supporting evidence. guideline 13. The guideline has been externally reviewed by experts Final drafts of each guideline published for comment. prior to its publication. 14. A procedure for updating the guideline is provided. TBC
Domain 4 – CLARITY OF PRESENTATION 15. The recommendations are specific and unambiguous. A clear standard template is used for each guideline 16. The different options for management of the condition or A clear standard template is used for each guideline health issue are clearly presented. 17. Key recommendations are easily identifiable. A clear standard template is used for each guideline
Domain 5 – APPLICABILITY 18. The guideline describes facilitators and barriers to its Where relevant this is documented in the background information relating to application. each individual guideline 19. The guideline provides advice and/or tools on how the This is documented in the background information relating to each individual recommendations can be put into practice. guideline. The format of the published guideline is designed to be useful in day to day practice. 20. The potential resource implications of applying the Where relevant this is documented in the background information relating to recommendations have been considered. each individual guideline 21. The guideline presents monitoring and/or auditing Where relevant this is documented in the background information relating to criteria. each individual guideline. Some national data sets will allow monitoring of some guidelines. Web traffic stats will give an indication of the dissemination of the guidelines.
Domain 6 – EDITORIAL INDEPENDENCE 22. The views of the funding body have not influenced the The project does not have a single individual funder, being a collaboration Scottish Palliative Care Clinical Guidelines 7 June 2012
AGREE II Requirement How the requirement is met content of the guideline. between multiple organisations, whose resource commitment is primarily staff time. A small amount of Scottish Government funds for the project are held by SPPC which is an independent Scottish charity. 23. Competing interests of guideline development group The guideline review and development project was co-ordinated by the members have been recorded and addressed. Scottish Partnership for Palliative Care, an independent Scottish Charity. A register of interests was maintained for the Steering Group and topic Sub- Groups. Scottish Palliative Care Clinical Guidelines 7 June 2012
Appendix 3 Decision Making framework. The decision making framework is supplied as a separate document containing electronic links for ease of use – an image of the framework is included below.
Scottish Palliative Care Clinical Guidelines 7 June 2012
Appendix 4 Style Guide and Development Checklist for Use by Subgroups
NOTES ON WRITING STYLE FOR THE PUBLISHED TWO-PAGE GUIDELINE
1. The recommendations should be specific and unambiguous.
2. The different options for management of the condition or health issues should be clearly presented.
3. The key recommendations should be clearly identifiable.
DOCUMENTING THE BASIS FOR THE PUBLISHED TWO-PAGE GUIDELINE
What is the health question (s) covered by this guideline?
To which patients does this guideline apply?
What was the basis of the decision to re-write, revise, refresh or rejoice this guideline?
What are the strengths and limitations of the body of evidence for this guideline?
What evidence was reviewed in Scottish Palliative Care Clinical Guidelines 7 June 2012 relation to this guideline?
What health benefits, side effects and risks have been considered in formulating the recommendations
Are there any specific and important facilitators or barriers to the application of this guideline?
What re the potential resource implications of applying the guideline?
IS there an actual or potential means through which the implementation of this guideline might be monitored/audited? Scottish Palliative Care Clinical Guidelines 7 June 2012
Appendix 5 Template for Pharmacological Guidelines Description
Preparations
Indications
Cautions
Important drug interactions or contra-indications
Side effects
Dose and Administration Scottish Palliative Care Clinical Guidelines 7 June 2012
Practice points
Patient and carer advice points
Further information
Resources and references Scottish Palliative Care Clinical Guidelines 7 June 2012
Appendix 6 Template for symptom control guidelines Introduction (should also include a potential cause of symptom)
Assessment (including reversible causes)
Management
Non drug management
Medication
Practice points
Patient and carer advice points Scottish Palliative Care Clinical Guidelines 7 June 2012
Further information
Resources and references Scottish Palliative Care Clinical Guidelines 7 June 2012
Appendix 7 Evidence sourcing process