Patient Involvement at #EFIC2023

The theme for #EFIC2023 is ‘Personalised Pain Management: The Future Is Now’. There is increasing evidence that personalised pain management is required to fit individual aspects of each patient with chronic pain. Individualised pain management, the prediction of a certain response to treatments, decision-making related to the prevention of pain are all important aspects to be considered. The same applies for acute pain and the transition from acute to chronic pain. #EFIC2023 aims to analyse recent developments in this area from pain research to pain management, from existing knowledge to pressing questions, from controversies to clear-cut evidence.

Pain in Europe XIII will continue to focus on an interdisciplinary pain management, with a programme that benefits basic researchers, practicing physicians, as well as allied healthcare professionals. We of course also address patients’ needs by including their voice in the program. Please find out more in the interview below with #EFIC2023 SPC member and Pain Alliance Europe President Deirdre Ryan:

Please find more information on patient-focused sessions at #EFIC2023 below:

PAIN IN CENTRAL NEUROLOGICAL DISEASES: EMERGING CONCEPTS AND CLASSIFICATION ALLOWING FOR PERSONALIZED TREATMENTS

Neurological diseases affect a large number of individuals, and their prevalence is growing fast worldwide. Pain is a major manifestation of several of these disorders, including degenerative diseases such as Parkinson disease (global CNS degeneration), inflammatory disorders such as multiple sclerosis (multifocal CNS lesions followed by latter neurodegeneration) and traumatic conditions such as spinal cord injury (focal CNS lesion). For most of these diseases, no efficacious evidence-based treatment exists. This is in part due to very limited information on how to identify and disentangle the different pain types which are often concurrently present in each patient. In this topical workshop it will be shown that pain is not always neuropathic in these disorders. New data will be presented on how to characterize the main pain syndromes in these patients and new pain classification systems and pathophysiological hypotheses will be discussed, followed by a reflection on how pain identification should lead to better individualized treatment. Then, new pain syndrome-specific treatment options will be presented and discussedbased on real-patient-based interactive case vignettesand considering the current/state-of-the-art treatment recommendations for each disease condition and how they can be individualized to an individual patient.

WHAT DO PATIENTS WISH TO KNOW ABOUT PAIN AND ITS MANAGEMENT?

This workshop addresses the theme of the upcoming EFIC Congress, “personalized pain management,” by focusing on questions related to teaching and informing patients and families through the lens of perioperative pain. The recommendation to provide patients and families with information about perioperative pain and its management is strong, yet, the evidence for this is weak. There is sparse information about the content, timing, and format of how to offer the information. The proposed workshop aims to address these limitations. In the first talk, a pain nurse will describe his experience and insights associated with the information he received during the course of cancer treatment. We will then present a patient leaflet developed by a multi-stakeholder group. Communicating with pediatric patients about their upcoming surgery and pain management is challenging. Cartoons are a means for story-telling and connecting to emotions. Can they help children take up challenges related to surgery? We will demonstrate the cartoons and describe findings when cartoons were shown children undergoing surgery. We will conclude the session with results from a large audit performed among patients and family members, questioning them about the content and timing of information about perioperative pain that they would have liked to receive.

PATIENT PARTNERSHIPS AND CO-PRODUCING HEALTHCARE: RESEARCHER, CLINICAL ACADEMIC AND PATIENT PERSPECTIVES AND EXPERIENCES

This workshop will explore patient partnerships and co-producing healthcare for individuals living with pain. Integration of the patient voice throughout the lifecycle of research, and utilisation of lived experience in co-produced healthcare, is fundamental to developing personalized pain management strategies. Patient partnerships and co-production enables healthcare and research that meets the needs of patients for improved outcomes and high value care.

Through this workshop, participants will be introduced to the spectrum of participation (Spectrum-of-Participation.jpg (1436×1196) (peoplehub.org.uk)) and evidence and policy supporting patient partnerships to inform research and delivery of pain services. The benefits of patient partnerships will be explored through the perspectives and experiences of a researcher, a clinical academic and a patient representative. We will discuss developing authentic and sustainable relationships that lead to meaningful engagement with patient partners. Future directions and considerations for patient partnerships will be proposed.

During this workshop presenters will share their knowledge and experience of patient partnerships and co-production, whilst encouraging discussion and contribution from the audience.

UNDERSTANDING THE NEEDS OF EMERGING ADULTS WITH CHRONIC PAIN: PERSONALISING CARE AND SUPPORTING HEALTHCARE TRANSITION

Upwards of 50% of children who experience chronic pain will continue with pain into adulthood, often with concurrent decrements in educational, vocational, psychological, and social functioning. The transition from childhood to adulthood represents a critical time in terms of identity, development, and healthcare. Transitioning from paediatric health care to adult care can be fraught with problems for both patients and clinicians. Research has identified young adults with chronic pain report barriers to establishing adult care and frequently disengage with adult healthcare services. However, there is a paucity of research within this area. This workshop will provide evidence to highlight the important role of development and identity challenges in younger adults with chronic pain. It will describe the most recent research findings relating to healthcare transition among young adults with childhood-onset chronic pain. Finally, the session will discuss personalised pain management for younger adults- via a development and delivery of a transitional service. The overall aim of the session is to equip attendees with an understanding of the needs of emerging adults with chronic pain, to lessen gaps in healthcare, and provide effective and supportive personalised care.

TAILORING EXERCISE FOR INDIVIDUALS WITH CHRONIC MUSCULOSKELETAL PAIN: OPPORTUNITIES AND BARRIERS

Musculoskeletal pain is a global problem; recent data from the Global Burden of Disease study indicates that in less than 30 years, the need for rehabilitation of musculoskeletal disorders will have risen a staggering 62%. While a multitude of conservative management strategies exists, exercise is widely accepted as a cornerstone of management for painful musculoskeletal conditions. However, despite decades of research the underlying mechanisms and effects of exercise are still not fully understood, and many opportunities and barriers exist to successful implementation of exercise programmes. This workshop will cover topics such as why the same type of exercise may have a positive effect for one person while another experiences exacerbation of their pain. We will present the latest evidence on effective tailoring of exercise to improve exercise outcomes and will outline considerations needed when using exercise as part of the overall rehabilitation approach. In addition, thoughts and beliefs of what patients consider important to improve their pain via exercise will be discussed.

FOR PATIENTS, WITH PATIENTS: INVOLVING USERS IN THE DEVELOPMENT OF DIGITAL INTERVENTIONS FOR CHRONIC PAIN

Adequate pain management is recognized as a basic human right, however, access to evidence-based treatment is limited globally. Digital interventions can help fill this gap and provide accessible care; however, patients are often not involved in their development, limiting their external validity and efficacy.

Dr. de la Vega will present on how to conduct a needs assessment in young people with chronic pain without access to pain clinics, with the goal to better-understand how a digital intervention can help fulfil those needs and disseminate evidence-based care to otherwise unattended patients. Results from Phase 1 of the Digital SPA project will be presented. Mrs. Malliou will then present on how to design patient-centred innovations sharing her experience as a patient involved on digital health intervention development. She will focus on the development of virtual patient scenarios with examples from the EPIONE and TOUS Include projects and on the contribution in the StigmApp. Barriers of patient involvement will also be highlighted. Finally, Dr. Bartels will present the results of the Phase 1 of the DAHLIA project, in which online focus groups with patients and therapists were conducted to explore biopsychosocial health needs and receive feedback on a digital health treatment prototype.

RE-CONCEPTUALIZING DEPRESSION IN THE CONTEXT OF PAIN: EVIDENCE AND CLINICAL IMPLICATIONS IN PRIMARY CARE

Many people living with pain also suffer from low mood. Current clinical practice that aims to improve low mood in the context of pain is challenging, varied, and to date, suboptimal.

We present three themes around pain and depression. Firstly, we set the context. We will highlight how current pain research has failed to adequately address low mood, and how current guidelines are suboptimal and fall short of both patient and GP needs, as evidenced through our qualitative research. We then focus on specifically identification and differentiation, by describing which measures show most promise for distinguishing pain-related distress from depression in clinical contexts from a quantitative large scale questionnaire study. Finally, we describe treatment development targeting emotion regulation mechanisms, using a so-called “transdiagnostic” approach, rooted in the idea that chronic pain, low mood and distress share functions and processes that trigger, maintain, and contribute to the exacerbation of the observed co-occurrence. This presentation will outline the conceptual background and evidence base as well as detail the treatment model through two areas of clinical relevance: how to build patient engagement and how to provide clinicians and patients with better tools to manage emotions.

THE IMPORTANCE OF IMPLEMENTING ICD-11 IN PAIN MANAGEMENT AND TREATMENT: A PRACTICAL GUIDE – A SOCIETAL IMPACT OF PAIN (SIP) WORKSHOP

The workshop will be chaired and start with Angela Cano introducing the SIP platform. Antonia Barke will introduce the International Classification of Diseases (ICD), what the eleventh revision entails, in terms of pain coding and the impact of ICD-11 in pain management. Antonia Barke will also present the key results of the SIP 2022 Road Map monitor.

Patrice Forget will showcase how ICD-11 is applied in his clinical practice and teaching. He then will introduce and explain the next phase of the workshop: a case study session, where attendees will be able to live vote on the different case studies that will be presented. Deirdre Ryan and Patrice Forget will present four case studies where different scenarios will be brought to life and attendees will have to vote which type of pain classification corresponds with each case study and discuss the reasoning behind it with each other. Around 12 minutes will be dedicated to each study. Each case study will focus on a different discipline to attract different disciplines to the workshop, and to include the biopsychosocial model.

Patrice Forget and Antonia Barke will then demonstrate how the coding tool works. A general discussion chaired by Angela Cano will follow.

TACKLING THE CHALLENGE OF CANCER PAIN: NOVEL DIGITAL HEALTH INTERVENTIONS SPANNING THE TREATMENT AND SURVIVORSHIP TRAJECTORY

Historically, cancer pain has been predominantly viewed through a biomedical lens. However, innovative clinical and basic science research has delineated the biopsychosocial nature and influences on pain in individuals living with and beyond cancer. This body of work is guiding the emergence of novel biopsychosocial-informed digital health interventions which address areas of unmet need in oncology patients experiencing pain. Digital health solutions embody a range of interventions. Including apps, wearable devices and sensors, telemedicine, electronic patient record systems and the application of data-science methodology. In this workshop, a researcher, a clinician-scientist, and a practising pain clinician will expand on innovations in digital health which address the significant issue of cancer pain at a pan-European level.

Dr Heathcote will provide an overview of a novel digital health ‘wise intervention’ designed to harness adaptive mindsets about the body in childhood cancer survivors experiencing pain.
Dr Reme will present new findings from a clinical trial combining pre-operative hypnosis and a post-operative digital psychological intervention for patients with breast cancer-related pain.
Dr Brown will share his experience working as a pain clinician in Europe’s largest cancer centre, and the current and potential roles digital health interventions can play in oncology patients experiencing pain.

RECONSIDERING HOW WE APPROACH THE PAIN OF ENDOMETRIOSIS

Endometriosis, the presence of tissue resembling the uterine lining outside the uterus, is a common condition affecting 10% of reproductive-age women. It is commonly associated with a variety of pelvic pain symptoms (pain with menstruation, intercourse, bowel opening, urination, and non-cyclical pain), fatigue, and infertility. For many women, these symptoms are life-altering and disabling and do not resolve with standard treatments. This workshop will explore how recent work, particularly that from the IMI-PainCare subprojects PROMPT and TRiPP, has altered our understanding of endometriosis-associated pain and consider what this means for current clinical trial design and clinical practice. The workshop will be chaired by Lydia Coxon, an early-stage career researcher. Lone Hummelshoj will open the session with a presentation focussing on the patient journey, considering why it takes 7-11 years on average to reach a diagnosis of endometriosis and the impact this has on quality of life and wellbeing. Dr Daniela Rosenberger will then review how pain has been assessed in clinical trials of endometriosis and explore potential recommendations in this field. Finally, Dr Lydia Coxon will consider how taking a neurobiological approach can provide new insights into mechanisms underlying endometriosis-associated pain and what this might mean for future clinical pathways.

HEALTH LITERACY: PLAIN TALKING INTO PRACTICE

In this demonstration workshop, the topic of health literacy and its key importance in good, clear communication with patients will be discussed.

The workshop will invite participation from the attendees to consider what they think constitutes good communication, and the presenters will share their multi-professional experiences and perspectives of nursing, physiotherapy and family medicine (both clinical and academic) and what good (and bad!) clinical communication looks like to patients, in both verbal and written format.

The benefits of good communication, in terms of improving patient understanding, improving patient health literacy and empowering patient involvement in decision-making about their care, will be discussed.

The presenters will share good practices with the workshop attendees, including the demonstration of tools developed by Sandra Lakke and her team for physiotherapists to use in their appointments with patients.

There will be interactive elements throughout the workshop to allow attendees to participate. The workshop will conclude with a question-and-answer discussion session giving attendees opportunities to share their own experiences and gain constructive advice in response to clinical questions that have arisen.

NOCIPLASTIC PAIN, THE ICD-11 CLASSIFICATION AND CENTRAL SENSITIZATION: BORDERS, OVERLAP AND CLINICAL USE

What do these terms mean for the patient with visceral pain?

The ICD 11 classification of pain: are mechanisms part of it?

Speaker: Antonia Barke (Germany)

Nociplastic pain: what it is, what it is not, and beyond primary musculoskeletal pain

Speaker: Eva Kosek (Sweden)

Central sensitization: what it is in the lab, what they could be in the clinic, and what it is not

Speaker: Rolf-Detlef Treede (Germany)

PSYCHEDELICS-ASSISTED PAIN THERAPY: PROMISING, DANGEROUS OR A STUPID IDEA?

In the last decade, research into therapeutic use of psychedelics has led to a large leap forward for the field. For post-traumatic stress especially, but also for depression, landmark studies have shown the potential of psychedelic-assisted therapy. The use of psychedelics for pain therapy is now being discussed. Here, we will discuss the current state of research, future potential, and risks associated with psychedelic-assisted pain therapy by being objective, scientific based and patient-centered.