Axial Spondyloarthritis: Patient-Reported Impact in Europe

ISBN-13: 9783030976088 / Angielski / Miękka / 2022

Marco Garrido-Cumbrera;Victoria Navarro-Compán;Christine Bundy

Opis

This open access book provides an overview of the International Map of Axial Spondyloarthritis (IMAS) project -focusing on Europe-,  a wide-ranging, multi-disciplinary collaboration between academic groups, Health Care Professionals (HCPs), patient organizations and Novartis. IMAS was conceived to improve knowledge of Axial Spondyloarthritis (axSpA) and raise awareness of its heavy burden globally. By asking more than 2,000 patients across Europe about the impact of axSpA on multiple aspects of their life, the full extent of this disease was investigated from a direct patient perspective. This allowed a unique understanding of how living with axSpA affects the daily lives and well-being of patients, and how this varies between European countries.

Axial Spondyloarthritis: Patient-Reported Impact in Europe highlights opportunities for progressing quality patient care to be applied to health services globally. HCPs, policy makers and patients will find this book to be an indispensable resource for improving the understanding of this chronic condition, including patients’ clinical outcomes, the protection of those at risk of psychological distress, and the economic burden on patients and society.

Spis treści

Executive Summary.- About the Authors.- Introduction.- Objectives.-Methodology.- Demographic Profile of Survey Respondents.- Diagnosis.- Physical Health.- Psychological Health.- Social Support.- Healthcare.- Habits and Lifestyle.- Employment Status and Productivity.- Fears and Hopes.- IMAS European Survey Strengths and Limitations.- Glossary of Terms.

O autorze

Marco Garrido Cumbrera is a professor and researcher at the University of Seville (Spain) and an international expert on health-related issues from a social and environmental perspective. Professor Garrido has participated in more than 40 research projects and has co-authored more than 100 scientific publications. He has previously worked for the World Health Organization (WHO) on several international projects and is currently leading the REUMAVID study to assess the effects of the COVID-19 pandemic on patients with rheumatic diseases in Europe, as well as the International Map of Axial Spondyloarthritis (IMAS). He collaborates with several scientific and patient organisations and is a research advisor to Axial Spondyloarthritis International Federation (ASIF).

Victoria Navarro Compán is a member of the executive committee of Assessment of SpondyloArthritis international (ASAS) Society, where she also acts as executive secretary. Dr Compan received her degree in Medicine and Surgery from the University of Seville. A specialist in Rheumatology, she has completed masters degrees in epidemiology from the University of Maastricht, and spondyloarthritis at the European University of Madrid. She spent two periods in Rheumatology international centres of excellence: Charité-Universitätsmedizin in Berlin, German and the Leiden University Medical Center, Belgium. Since 2015, she combines clinical practice and research at the Hospital Universitario La Paz and teaching at the Universidad Rey Juan Carlos in Madrid (Spain), all of which focus on spondyloarthritis.

Christine Bundy is a Health Psychologist specialising in behaviour change, management of health anxiety and well-being research. She is the Behavioural Scientist advising the Welsh Government Technical Advisory Group, International Intelligence Committee. Professor Bundy’s patient-facing research involves applying and evaluating psychological interventions for patients with long-term conditions, in particular complex conditions like spondyloarthritis. In addition, Professor Bundy’s research interest also include developing integrated multi-disciplinary services across these long-term conditions ensuring that psychological support is included as part of the service provision.

Raj Mahapatra was diagnosed with ankylosing spondylitis (AS) in 1994 but only discovered the National Ankylosing Spondylitis Society (NASS; the UK’s AS charity) in 2009 after having discovered a pain management regime that allowed him to revisit his passion for running. A law graduate from Bristol University, Raj practised as a solicitor in England, where he advised insurance companies on their corporate affairs, before he moved to the United States (US) as an integral part of his law firm’s e-commerce practice, advising fast-growing companies on their corporate and intellectual property strategies.S ince returning from the US in 2002, Raj has worked at Board level with pharmaceutical, drug development, public relations and film companies. Raj currently shares his time between working at board level with an international PR agency whilst developing various social impact projects both in the UK and around the world. Raj was elected Chair of the NASS in 2014 and, shortly afterwards, was elected an Executive Committee Member of the Axial Spondyloarthritis International Federation (ASIF).

Souzi Makri represents the Cyprus League Against Rheumatism, and is on the expert patient list of the EMA. She also Chair’s two European organisations: ENFA, the European Network for Fibromyalgia Associations, and AGORA, an organisation for rheumatic patients in southern European countries. As part of her role in the European League Against Rheumatism (EULAR) she chairs the EULAR People with Arthritis / Rheumatism across Europe (PARE) Representation Committee, which gathers representatives of rheumatic and musculoskeletal user groups around Europe to work together towards improving the quality of life for people in Europe living with these conditions, with the vision to empower and help them lead full and independent lives.

Carlos Delgado Domínguez has a Degree in Psychology and Masters in Contextual Therapies: Acceptance and Commitment Therapy and Analytical-Functional Psychotherapy. Doctor in Biomedicine. He is currently a Health Psychologist at the Health & Territory Research (HTR) of the University of Seville an interdisciplinary research group that specializes in conducting representative surveys (e.g. patient surveys), statistical data analysis, and field studies.

Pedro Plazuelo Ramos is President of the Spanish Federation of Spondyloarthritis Associations (CEADE). In this capacity, he is responsible for organizing, developing and promoting the work of the associations that make up CEADE, in order to achieve the best results that benefit patients affected by spondyloarthritis.

Denis Poddubnyy is Professor of Rheumatology at Charité University Hospital, Berlin, Germany. Professor Poddubnyy has been a physician and researcher at the Charité University Hospital since 2008. In April 2016 he was appointed as a full Professor and Head of the Rheumatology Unit, with a focus on spondyloarthritis, at Benjamin Franklin Campus. His research activities have focused on early diagnosis, treatment, and outcomes in patients with axial spondyloarthritis, with his lecturer qualification thesis entitled ‘Prediction and prevention of disease progression in early axial spondyloarthritis’. Additionally, he is a member of the Assessment of SpondyloArthritis international Society (ASAS) Executive Committee and author of numerous publications and book chapters on spondyloarthritis.