The authors thank all patients, families and healthcare professionals contributing to this study. The authors also thank the Myositis UK Executive Committee and all members of Myositis UK for allowing presentation at their annual general meeting and facilitating completion of the service evaluation questionnaire.
Myositis UK is a registered charity providing information and support to individuals and their families affected by Dermatomyositis, Polymyositis, Inclusion Body Myositis and Juvenile Dermatomyositis.
UK Myositis Network (UKMYONET) members providing feedback:
Robert G Cooper, Professor of Rheumatology, MRC-ARUK Institute for Ageing and Chronic Disease, University of Liverpool.
Christopher Edwards, Professor of Rheumatology, University Hospital Southampton NHS Foundation Trust.
David Hilton-Jones, Consultant Neurologist, Oxford University Hospitals NHS Foundation Trust.
David Isenberg, Professor of Rheumatology, University College London Hospitals NHS Foundation Trust.
Patrick Kiely, Consultant Rheumatologist, St George’s University Hospitals NHS Foundation Trust.
Heidi Lempp, Senior Lecturer in Medical Sociology, Kings College London.
Neil McHugh, Professor of Pharmacoepidemiology, University of Bath.
Pedro Machado, NIHR RD TRC Postdoctoral Fellow & Honorary Consultant in Rheumatology and Muscle Diseases, MRC Centre for Neuromuscular Diseases & Centre for Rheumatology, University College London.
John Pauling, Senior Lecturer and Consultant Rheumatologist, Royal National Hospital for Rheumatic Diseases.
Sarah Tansley, Clinical Research Fellow, Royal National Hospital for Rheumatic Diseases.
John Winer, Consultant Neurologist, University Hospitals Birmingham NHS Foundation Trust.
Delphi panel participants:
Shirley Caldwell, Senior Rheumatology Research Coordinator, Salford Royal NHS Foundation Trust.
Robert G Cooper, Professor of Rheumatology, MRC-ARUK Institute for Ageing and Chronic Disease, University of Liverpool.
Shouma Dutta, Consultant Rheumatologist, Staffordshire and Stoke-on-Trent Partnership NHS Trust.
Christopher Edwards, Professor of Rheumatology, University Hospital Southampton NHS Foundation Trust.
Nagui Gendi, Consultant Rheumatologist, Basildon and Thurrock University Hospitals NHS Foundation Trust.
Joanne Goode, Patient representative and Myositis UK Treasurer.
Patrick Gordon, Consultant Rheumatologist, King’s College Hospital NHS Foundation Trust.
Will Gregory, Specialist Rheumatology Physiotherapist and Advanced MSK Practitioner, Salford Royal NHS Foundation Trust.
David Hilton-Jones, Consultant Neurologist, Oxford University Hospitals NHS Foundation Trust.
Patrick Kiely, Consultant Rheumatologist, St George’s University Hospitals NHS Foundation Trust.
Heidi Lempp, Senior Lecturer in Medical Sociology, Kings College London.
Pedro Machado, NIHR RD TRC Postdoctoral Fellow & Honorary Consultant in Rheumatology and Muscle Diseases, MRC Centre for Neuromuscular Diseases & Centre for Rheumatology, University College London.
Neil McHugh, Professor of Rheumatology, Royal National Hospital for Rheumatic Diseases.
James Miller, Consultant Neurologist, The Newcastle upon Tyne Hospitals NHS Foundation Trust.
Paula Jordan, Patient representative and Myositis UK General Secretary.
John Pauling, Senior Lecturer and Consultant Rheumatologist, Royal National Hospital for Rheumatic Diseases.
Fiona Pearce, Clinical Lecturer in Rheumatology, University of Nottingham.
Michael Rose, Consultant Neurologist King’s College Hospital NHS Foundation Trust.
Jade Skeates, Specialist Rheumatology Physiotherapist, Royal National Hospital for Rheumatic Diseases.
Sarah Tansley, Clinical Research Fellow, Royal National Hospital for Rheumatic Diseases.
Paul Truepenny, Patient representative.
Yvonne Truepenny, Relative/caregiver.
David Tucker, Patient representative.
John Winer, Consultant Neurologist, University Hospitals Birmingham NHS Foundation Trust.
Participants in focus group to create plain language versions of statements:
Paul Truepenny, Patient representative.
Yvonne Truepenny, Relative/caregiver.
David Tucker, Patient representative.
Irene Oakley, Patient representative (relative/caregiver) and Myositis UK Group Coordinator.
Joanne Goode, Patient representative and Myositis UK Treasurer.
Steering team.
James B Lilleker, Clinical Research Fellow, The University of Manchester.
Hector Chinoy, Senior Lecturer and Consultant Rheumatologist, The University of Manchester.
Janine Lamb, Reader, The University of Manchester.
We wish to thank those who reviewed the manuscript for their constructive comments (Additional file 2).
Funding
This study was supported in part by Arthritis Research UK (18474), the Medical Research Council (MR/N003322/1) and the UK Myositis Network (UKMYONET). UKMYONET is supported by the Manchester Academic Health Science Centre (MAHSC).
This report includes independent research supported by the NIHR Biomedical Research Unit Funding Scheme. The views expressed in this publication are those of the authors and not necessarily those of the NHS, the National Institute for Health Research or the Department of Health.
Availability of data and materials
Summary data is contained in this manuscript and in the supplementary materials. The full dataset used and/or analysed during the current study are available from the corresponding author on reasonable request.