Scottish Palliative Care Clinical Guidelines

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

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

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