Computer generated transcript

Warning!
The following transcript was generated automatically from the content and has not been checked or corrected manually.

WHITE SWAN Using AI & social data to improve fibromyalgia diagnostics & care June 2022Social Media Data has the power to save lives. Julie King had been suffering undiagnosed for over 10 years, in a wheelchair volunteers at Black Swan utilised Black Swan’s AI tech combined with socialf The Opportunity: data to help doctors reach a correct diagnosis. Treatment quickly ensued and her life was transformed. Utilise the social data This inspired the creation of White Swan, a registered charity. ecosystem, combined with AI to create an insightful Wheelchair bound and in window into patient’s lived danger of losing her life experiences... Completing Triathlons 2 Introducing White Swan ✓ Registered charity with a mission to improve the health of society ✓ Using Proprietary tools and AI ✓ A dedicated team of experts ✓ Provides measurable benefit for our partners Institute of Cancer and Genomic Sciences 3What makes White Swan’s insight reporting unique and powerful? Nearly 5 billion people use social media to communicate and 80% of those use it to benefit their health. We use AI to make sense of this powerful source of patient insight and use it to improve diagnosis, treatment and overall care of patients right through their journey. Circumnavigates health inequalities Category agnostic Provides robust insight into rarer conditions and hard Can be segmented by condition, groups of conditions, to reach groups in society globally and at scale. symptoms, lifestyle and risk factors or treatments. Unbiased by design Global reach Listening rather than asking means insights are led by Can be segmented by country, language and in some topics and associations within the data rather than by cases region. questions asked. Digital exclusion the only bias. Highly agile and fast Increased Depth Ability to adjust focus to meet evolving research Patients typically share more detail anonymously with questions and deep dive into key areas. peers than face to face with a doctor. Sources: 5 Bill - Statista, 80% - Health Care Compliant ProsExample Questions Answerable Using Social We have been working with leading commercial, charitable and academic organisations globally for the last 5 years, answering a wide variety of research questions Improve care and Inform research Create new and more Design Pilot and Clinical Accelerate diagnosis support Trials priorities ✓ Why are patient going effective treatments ✓ What are the barriers and ✓ What issues do patients ✓ What are the most undiagnosed? ✓ What are the current facilitators which can inform face with existing significant symptom and ✓ What are patients barriers to adoption and better care pathways? therapies? What care impacts on a reporting to be the early adherence for existing ✓ What language are patients recruitment questions patient’s day to day life onset symptoms and are treatments? using to describe their should they be asked? for example work, there any triggers for experiences? ✓ What challenges do relationships and mental patients face that may health? these? pose barriers to participation? ✓ Which platforms are patients using to discuss 5 their experiences? Project Background & Overall Objective Through the development of Million Minds, White Swan has developed a powerful dataset which offers Overview & unparalleled unbiased patient insight. Background The current evidence suggests that many patients with fibromyalgia continue to receive invasive procedures for which there is weak or no evidence base [1]. Significant variation in practice occurs geographically within the English National Health Service [1]. A research priority-setting initiative involving patients, carers and clinicians has also highlighted a number of research questions which are particularly relevant to patients with fibromyalgia [2]. The broad themes of the gaps identified were: the value of personalized targeted treatment and subgrouping of patients; the efficacy of various self-management strategies and educational initiatives; and identification of the ideal health care setting to provide fibromyalgia care [2]. Our Partner project to analyse social media conversation relating to fibromyalgia with the aim of understanding a patient’s perspective of these themes. Overall objective: Through online data analysis, gain a better understanding of the patients’ journey, identify Objective barriers to the delivery of optimal care as well as identify potential opportunities to improve patient care. 6Questions To Address Patient ‘Lived’ ✓ What is the path to diagnosis – what are the barriers and delays in diagnosis due to? ✓ What triggers have been linked to causing symptom onset, or flares of fibromyalgia? Experience of ✓ What is the full range of symptoms that patients are reporting? Fibromyalgia ✓ What is the burden of sleep and cognitive impairment and what are the best treatment strategies being used? ✓ What is the impact on patients and all aspects of their life including: physical and mental health and wellbeing, family, work and social? (answered in relation to symptoms) Patient Experience ✓ What healthcare utilisation is occurring? Which services are being utilised, e.g. primary care, secondary care (neurology, of Treatment rheumatology, psychiatry, pain services), hospital admissions and accident and emergency care? ✓ What treatments are being received, including non-pharmacological interventions such as exercise therapy and psychology input? ✓ What is the best setting to treat patients? ✓ What are the barriers to self-supported management? ✓ Which treatments are being recommended online, by whom, and are they effective? ✓ Are there any overall gaps and opportunities to improve the treatment of patients with fibromyalgia? Advice and ✓ Where do patients access advice and what advice is being sought, e.g. relating to diagnosis, treatment options, work issues, recommended services. Information ✓ How are patients and clinicians receiving education about fibromyalgia? Does it help patients to improve their health literacy? 7Our Approach Align Brief An insight consultant worked with the project stakeholders to define the brief – Project Detail both the objective and the questions we’d answer. Dataset: Conversation relating to A segment of the White Swan dataset has Fibromyalgia from May-2019 to April- Calibrate Data been curated, in line with the brief, to 2021 (2 Years) (~714k data points) ensure only relevant, high quality social conversation are included in analysis. Geography: Global conversation in English Language, with a UK focus Create Updates & additions to White Swan’s Questions On: Lived experience, journey existing taxonomies (NLP structured to diagnosis, treatment experience, Taxonomy databases) were made to ensure education, and self management specific questions are answered. efficacy Black Swan’s proprietary Insights Tools Output: PowerPoint presentation sharing Data Analysis quantitative and qualitative insight were used to interpret and analyse the data & a report was produced and presented which answers the questions posed. 8Our Approach 9Key Takeaways Project SampleOpportunities & Barriers In Care Personalisation & Sub-Grouping • Sub-grouping patients by their sleep symptoms (for example those who are insomniac vs. those who can sleep but still feel tired when they wake) can allow for personalised treatments plans which stop patients being stuck in rest-based cycles of fatigue. • Examining how to sub-group comorbid symptom, for example fibro and chronic fatigue collectively, could aid understanding and diagnosis of conditions. This approach could also benefit those suffering from arthritis, and IBS alongside fibromyalgia. • The physical reason why patients are experiencing pain and other symptoms, and how symptoms interrelate (for example numbness) is often unknown. Because of this, treatment plans are difficult to personalise. Self Management & Educational Efficacy • Educating patients and professionals about fibromyalgia flare triggers, like anxiety, food and weather/temperature, is likely to improve self-management practices. Patients can prevent more of their flares if health care professionals provide strategies to combat these triggers. • Help patients to self manage their flares by understanding their specific nutritional needs. • To build strength and vitality, patients try to exercise. Their pain restricts their efforts. Strategies to reduce pain before, in, and after exercise would benefit them. • Self management of fatigue could improve if professionals show patients ways to improve sleep hygiene and prescribe appropriate physical and medicine treatments to help patients rest. • Providing information about the comorbidity of mental health and illnesses like fibromyalgia can help patients to understand that illnesses often cause mental health to worsen. This understanding could help them feel less isolated by their illness and discover ways of supporting and encouraging good mental health. • Educational materials which are designed to educate family and friends of the patients could help to improve patients’ anxiety and feelings of isolation. • Helping suffers of fibro to manage their weight, can help patients’ overall health, reduce pressure on joints, and improve mental health. Ideal Health Care Setting • Fibromyalgia patients need comfortable, stress easing spaces in which to meet health professionals. • They like speaking to physios and therapists about their condition because they provide them with ways to reduce pain and stress. • Patient interactions with GPs, and other doctors are often difficult, because patients believe they do not understand how severe their pain is, or/and do not believe fibromyalgia is an actual condition. Delivering educational information about these factors (in relation to patient management) to medical professionals could improve patient communication, subsequent diagnoses, and treatments of fibromyalgia. 11Data Overview Project SampleBenchmarking Conversations Over Time Fibro conversations have been relatively constant over the last couple of years save a spike in March 2020 attributed to Covid-related conversations. In general, all medical conversation spiked during this time. 45,000 14,000,000 40,000 12,000,000 35,000 10,000,000 30,000 8,000,000 25,000 20,000 6,000,000 15,000 4,000,000 10,000 2,000,000 5,000 0 0 Fibromyalgia Trend Million Minds Comparison Trend* 13 * The Million Minds database currently contains 600 conditions.Where Do Adults Talk About Fibromyalgia Our analysis focuses on Long & Short form posts from a variety of sources but mostly centered around those from Twitter and Reddit. This provides a useful mix of high volume trends (Twitter) and rich, long form discussion (Reddit) which provides context to trends. Data Sources 600,000 567,552 500,000 400,000 300,000 200,000 100,000 96,194 23,307 23,283 21,917 8,858 - Twitter Reddit Forum Other Forums News Blogs Reviews 14Benchmarking Sources Of Conversation Most fibromyalgia, arthritis, and IBS conversations take place on Twitter. However, volumes of conversation are also large on Reddit and other forums, and patients are more likely to write about their experiences in detail on Reddit and other forums. % Share Of Voice by Patient-Centric Data Source 90% 82% 81% 80% 76% 70% 60% 50% 40% 30% 18% 20% 14% 11% 10% 4% 5% 4% 3% 1% 1% 0% 567k 1,699k 974k 96k 224k 235k 23k 80k 58k 92k Twitter Reddit Forum Other Forums 8.8k Reviews 12.6k Fibromyalgia Arthritis IBS 15Symptom Insights MethodologyMethodology: Symptom Onset & Range 1 2 3 4 Curate data from the global Use size of conversation Group global symptom Qualitative analysis of English patient-centric and NLP adjusted NPMI* areas. For example, identify patient conversations with sources like Reddit, Twitter, co-occurrence scores to if patients attribute a focus on the UK. The and Health Unlocked to identify the global triggers, ‘dizziness’ to pain and/or treatments and education access detail rich symptoms and significant issues with cognition. analysis has been conversations about fibro comorbidities in Assess volumes of approached at a global triggers and symptoms. patients' experiences of conversations, globally and level. fibromyalgia. in the UK. 17 association is between topics. The stronger the association, the more likely the topics will be to be part of the same conversation.Symptom Onset Project Sample 1 Most Conversed About Onset Triggers Stress & Anxiety • Stress and anxiety often triggers fibro symptom flares. • Patients also think that weather, temperature and air quality can trigger episodes. Rain, chilly weather, 2 hotter weather, high pollution, and high humidity are Weather, all cited as causes. Temperature & Air Quality • Less conversed about triggers included food. Patients are exploring which foods trigger their fibro flares. • Activity related symptom flares don’t appear in the top 3 3 triggers because patients understand how to Food manage their activity to prevent flares. Whereas they have less knowledge about how they can prevent stress, weather, and food from triggering flares. 19 *top 3 triggers shown It is clear that the food sensitivities, intolerances and allergies Onset Triggers: of fibro sufferers worsen their fibro symptoms. Trigger Food & Drinks 1 2 3 4 5 6 7 8 Gluten & Wheat Sugars Dairy & Lactose Carbs & Keto Alcohols Caffeine Fodmaps Processed Foods 377 Volume 354 Volume 288 Volume 280 Volume 270 Volume 163 Volume 98 Volume 88 Volume 9 10 11 12 13 14 15 Oxalates Histamines Soy Artificial Sweeteners Meat Nightshades Unhealthy Fats 84 Volume 61 Volume (Aspartame & (Mostly Red) 50 Volume & Fried Food 18 Volume Saccharine) 50 Volume 21 Volume 50 Volume 20 Foods & drinks are ordered by highest volume Generally, patients feel that the severity of their flares is reduced if they Onset Triggers: support their nutrition with supplementary nutrients their diets are Preventative Nutrition deficient in. To keep their vitamin D levels up, patients take supplements. They rely on medical test to measure their vitamin D levels. Vitamin D 272 Volume 21 GlUK PoststSymptom Range Project Sample Symptoms of fibromyalgia have been grouped into six areas. The most prominent symptom area, as expected, is pain. The other areas are Fatigue, Mental Health, and Unexpected Sensations, Cognition. Symptoms of 263,840 Sense Sensitivities also features. GLOBAL EN CONVERSATIONS In conversations, patients regularly describe comorbidity. While links to other Fibromyalgia UK CONVERSATIONS 42,639 conditions have the potential to be insightful, the statistical significance of these descriptions is inscrutable, without benchmarking against disease prevalence. Living With Pain Fatigue Mental Health Unexpected Sensations Cognition Sense Sensitivities #1 #3 #4 #5 #6 #2 187,227 | 27,922 71,629 | 11,422 61,823 | 10,454 24,441 | 3,335 12,727 | 1,820 7,456 | 1,144 Patients living with pain Symptoms of fatigue, Mental health Unexpected Symptoms which affect Heightened sensitivity that they attribute to and symptoms that symptoms which are uncomfortable, and patients' cognitive to environmental fibromyalgia, and the increase fatigue caused by confusing sensations in processes. factors, which causes symptoms pain causes. because they prevent fibromyalgia, and the the muscles and skin. immediate pain and rest. Understanding comorbidity of mental These symptoms symptom flares. chronic fatigue as a health conditions and include swelling, symptom of fibro and fibromyalgia. stiffness, and cramping. the comorbidity of fibro and chronic fatigue. 23 volumes, and UK volumes are displayedal on this slide (Global | UK). Within each symptom area, there are individual symptoms. These individual symptoms can appear in more than one area. For example, patients sometimes Symptoms of 263,840 attribute dizziness to Living With Pain and/or Fatigue and troubles with Cognition. GLOBAL EN CONVERSATIONS The most numerous symptoms sit in Living With Pain, Unexpected Sensations, and Fibromyalgia 42,639 UK CONVERSATIONS Sense Sensitivities. Living With Pain Fatigue Mental Health Unexpected Sensations Cognition Sense Sensitivities #1 #3 #4 #5 #6 #2 12,727 | 1,820 7,456 | 1,144 187,227 | 27,922 71,629 | 11,422 61,823 | 10,454 24,441 | 3,335 Types Of Pain Fatigue & Comorbidity Mental Health & Disruptive Sensations Cognitive Stress Pain Sensitivity Pain | 175,958 Fatigued | 55,641 Comorbidity Inflammation | 9,017 Brain Fog | 5,323 Tenderness | 3,244 Chronic Pain | 32,588 Chronic Fatigue | 19,445 Anxiety | 40,176 Stiffness | 4,033 Dizziness | 2,918 Allodynia | 1,404 Aching | 7,500 Dizziness | 2,918 Depression | 38,558 Swelling | 3,679 Fibro Fog | 2,880 Pain Sensitivity | 417 Joint Pain | 4,634 Extreme Tiredness | 951 Numbness | 3,026 Loss of Memory | 913 Hyperalgesia | 278 Soreness | 4,480 Lethargy | 473 Tingling | 2,241 Cognitive Disfunction | 785 Sensory Sensitivity Muscle Pain | 4,299 Loss Of Energy | 177 Burning Sensation | 489 Reduced Concentration | 154 Light* Sensitive | 994 Widespread Pain | 3,722 Morning Stiffness | 295 Noise Sensitive | 793 Allodynia | 1,404 Rest Cycles Feeling Shivery | 158 Weather* Sensitive | 787 Chest Pain | 1,323 Insomnia | 9,511 Stiff Neck | 157 Touch & Texture Sensitive | 696 Pain Sensitivity | 417 Restless Leg Syndrome | 3,452 Cold* Sensitive| 536 Hyperalgesia | 279 Difficulty Sleeping | 1,850 Muscle Control Heat* Sensitive | 523 Jaw Pain | 216 Lack Of Sleep | 867 Restless Leg Syndrome | 3,452 Smell Sensitive | 289 Unexplained Pain | 183 Sleep Disorders | 804 Spasms | 2,853 Taste Sensitive | 56 Facial Pain | 143 Night Sweats | 300 Arising Alongside Pain Chronic Insomnia | 176 Nausea | 3,464 Tenderness | 3,244 Dizziness | 2,918 Vomiting | 1,443 24 Total English language Twitter global volumes, and UK volumes are displayed on this slide (Global Burning Sensation | 489 | UK). Green Text indicates when a symptom is present in more than one symptom area. *There is a natural overlap in patients' concepts of weather, light, cold and heat. 187,227 GLOBAL EN CONVERSATIONS INDIVIDUAL TOPICS Chronic Pain Aching UK CONVERSATIONS 32,588 | 4,086 7,500 | 1,353 Types Of Pain i Patients' chronic pain drains their emotional a and physical energy. They try to keep positive P and enjoy their lives, but the longer they suffer from the pain, the more difficult it becomes. t Building activity levels to battle fatigue can i increase pain. Aches, soreness and joint pain W triggered by activity can immobilise them and cause them to become bedridden. When they Muscle Pain 3,722 | 765Pain g walking and writing difficult. The pain will travel 4,299 | 484 i around to different parts of their body. i Sometimes the pain means they struggle to L breathe. Pain killers are used to relieve the pain, but they don’t always work. There is resistance to the idea that patients should try to ignore the pain and ‘get on with it/push past it’. One patient mentions that this is Some patients cited the flu and covid vaccinesK. as triggers of fibro pain. Global Volumes | UK Volumes. The 25 sample posts and the qualitative analysis are focused on the UK. 187,227 GLOBAL EN INDIVIDUAL TOPICS CONVERSATIONS Nausea UK CONVERSATIONS 3,464 | 422 Arising Alongside Pain i Some patients suffer from nausea and vomiting a while experiencing fibro pain. Some also Dizziness P experience dizziness while suffering from fibro 2,918 | 372 pain, however this could also be classed as a t disruptions.h describes fatigue or cognitive i W prevents them from sleeping. At night and in the daytime, some patients note that episodes of g nausea and vomiting happen when they are i suffering an IBS or gastric flareup alongside a i fibro flare up. Those suffering from more than one Vomiting L condition, for example IBS and/or lupus and/or 1,443 | 75 ones who have taken a vaccine are unsure of, or don’t specify which condition or medication they attribute their nausea, dizziness and vomiting to. Some patients are experiencing dizziness because they have taken the medication Lyrica*. In geographies outside the UK, where it seems opioids are more likely to be prescribed for fibromyalgia pain, patients experience side effects Global Volumes | UK Volumes. The medications to relieve pain.n using the 26 *Lyrica global dizziness & Lyrica volume: 16mple posts and the qualitative analysis are focused on the UK. 71,629 CONVERSATIONS INDIVIDUAL TOPICS Fatigued Chronic Fatigue 11,422 55,641 | 9,677 19,445 | 2,804 UK CONVERSATIONS Fatigue & Comorbidity Fibro causes patients to feel physically and emotionally fatigued. e When fatigue symptoms flare, they feel like they always relieve fatigue. In some patients, the u fatigue is ever-present. When it is ever-present, i patients experience different strengths of t fatigue, from feeling generally tired, to feeling Lethargy Extreme Tiredness a lethargic and slow, to feeling too weak to move. 473 | 57 951 | 168 F other symptoms, particularly pain.atigue to their Fibro patients’ fatigue is chronic, as it persists and is reoccurring. The difference between the condition chronic fatigue and the fibro symptoms of fatigue isn’t clear. Patients depend fatigue results from one or two conditions.heir Global Volumes | UK Volumes. The 27 sample posts and the qualitative analysis are focused on the UK. 71,629 CONVERSATIONS INDIVIDUAL TOPICS Insomnia Difficulty Sleeping 11,422 9,511 | 1,272 1,850 | 204 UK CONVERSATIONS Rest Cycles Patients try to follow ‘traditional’ day to night rest & activity routines. The fatigue that is the result of sleeplessness/ insomnia disrupts their e efforts. This effects their performance at work and in their educational studies. u Bouts of insomnia and sleeplessness are often i followed by bouts/crashes of more severe fibro t symptoms. When experiencing these Lack Of Sleep Sleep Disorders a bouts/crashes, some patients feel so unwell that 867 | 164 804 | 92 F they are unable to leave their bed. skin contribute to periods of sleeplessness, and are worsened by periods of sleeplessness. To occupy themselves while experiencing insomniac/ sleepless episodes, patients often watch TV. Global Volumes | UK Volumes. The 28 sample posts and the qualitative analysis are focused on the UK. 61,823 GLOBAL EN INDIVIDUAL TOPICS CONVERSATIONS Anxiety UK CONVERSATIONS 40,176 | 7,705 Mental Health & Comorbidity h Fibro symptoms like pain and fatigue are l putting pressure on patient’s mental health. The a symptoms cause them to feel anxious and e depressed. Those diagnosed with anxiety and/or depression and fibro expect flares in any of l these conditions to trigger the others. Limits on patient’s social interactions and t mental health. Patients understand they needtheir Depression n social interaction to feel mentally well, but 38,558 | 7,342 e struggle with anxiety caused by social pressures at work and when meeting friends. M Isolation because of the Covid 19 pandemic is also cited as a cause of worsening mental struggle with pressure to maintain a healthy/low weight. When they gain weight, it causes anxiety and contributes to depressive episodes which flares their fibro. Some patients are relying on PIP support payments to support themselves. Patients are testing CBD to treat anxiety, Global Volumes | UK Volumes. The depression and fibro pain. 29 sample posts and the qualitative analysis are focused on the UK. 24,441 GLOBAL EN INDIVIDUAL TOPICS CONVERSATIONS 3,335 9,017 | 1,042 4,033 | 744 UK CONVERSATIONS s Disruptive n i Sensations t s stiffness, and numbness they experienceling, n contributes to how unwell they are feeling. e These sensations are at their most disruptive S when they affect the hands and feet - further limiting patients' ability to engage in every day, d self care, digital and creative activities. The Swelling Numbness t patients to worry that they are developing 3,679 | 516 3,026 | 394 c arthritis. Numbness confuses patients more than e the other symptoms, they can’t work out how they p are triggering the feeling. x Some believe that limiting their activity, due to e pain and fatigue, worsens these sensations, n particularly stiffness. U associations. Patients associate their pain with inflammation, even though, in medical terms, their pain is unlikely to be described as inflammatory. Some patients also link gut/stomach fibromyalgia, and are changing their diets totheir Global Volumes | UK Volumes. The reduce severity. 30 sample posts and the qualitative analysis are focused on the UK. 24,441 GLOBAL EN INDIVIDUAL TOPICS CONVERSATIONS 3,335 3,452 | 321g Syndrome UK CONVERSATIONS s n Muscle o Control t a Restless legs and spasms are most disruptive n While patients recognise restless leg as a fibro e symptom, they do not talk about the symptom S as a cause of, or in relation to fibro pain. It is an causes them stress.rritating occurrence Spasms e Spasms are often felt in the patient’s back area,39 t but occur across the body. For example, down c the side of the body, in the abdominal area, and e more activity than they usually do triggersg p spasms. e n U Global Volumes | UK Volumes. The 31 sample posts and the qualitative analysis are focused on the UK. GLOBAL EN CONVERSATIONS INDIVIDUAL TOPICS Brain Fog & Fibro Fog Cognitive Disfunction UK CONVERSATIONS 8,006 | 1,216 785 | 157 Cognitive Stress Some patients believe that their ability to because they suffer from fibromyalgia. Theted n most common cognitive issue appears to be a i reduction in short-term memory. Patients find it i difficult to remember words, the location of n items, and the information they need to g organise their everyday activities. Loss Of Memory Reduced Concentration o 913 | 157 154 | 19 regular and repetitive. They do not discuss how C they measure their cognitive function against what they understand to be ‘the healthy norm’. Patients discuss fog and other cognitive dysfunctions as if they are core symptoms of fibro, like pain and fatigue. They rarely attribute their cognitive troubles to the stress, pain and fatigue can put on the emotions and body. Global Volumes | UK Volumes. The 32 sample posts and the qualitative analysis are focused on the UK. 7,456 GLOBAL EN INDIVIDUAL TOPICS CONVERSATIONS 1,144 Tenderness Allodynia UK CONVERSATIONS 3,244 | 508 1,404 | 246 Pain s Sensitivity e t Symptoms of heightened pain sensitivity like i tenderness and allodynia limit patients' daily t activity. The pain caused by the sensitivity can i restrict their mobility. n Patients write about how their tenderness e mention that their hands, feet, back, hips, and S shoulders have been affected. Patients who Pain Sensitivity Hyperalgesia menstruate note that their tenderness is worse 417 | 63 279 | 46 e around periods, and some patients say that n in weather, for example, increased humidity or a drop in temperature, are cited as triggers of S tenderness. Patients are trying to educate others about allodynia pain sensitivity by explaining why they need to avoid putting tight and rough fabrics next to their skin. They find facial allodynia mentioned as a symptom, and patients shareia is posts which explain what the symptom is, they do not mention how the symptom effects their Global Volumes | UK Volumes. The day to day lives. 33 sample posts and the qualitative analysis are focused on the UK. 7,456 GLOBAL EN INDIVIDUAL TOPICS CONVERSATIONS 1,144 Light Sensitivity Noise Sensitivity UK CONVERSATIONS 994 | 132 793 | 129 Sensory s Sensitivities e t Some patients believe their senses have always been i more sensitive than others, while others think fibro t discomfort and pain. Some find light, noise, and scents i so overwhelming they disrupt their cognitive n processes. As weather (including temperature) e severe cognitive stress because of it.ly to suffer such S Weather Sensitivity Smell Sensitivity sensitivities (for example, more sensitive to hot, cold 787 | 119 289 | 36 e and/or pressure changes) are subjective to the climate n they live in. Some attribute their sensitivity to heat and cold to an inability to regulate their body temperature. S Light sensitivities can cause migraines in fibro patients. While some patients attribute their migraines to be co-morbid. Scents that are strong or chemical-aines like can cause nausea and cognitive disruption. Patients also mention problems with scents like beauty products), and cigarette smoke., hygiene and and eye masks to block out light, and earplugs tortains Global Volumes | UK Volumes. The block out noise at night. 34 sample posts and the qualitative analysis are focused on the UK.Co-Morbidity In Fibromyalgia 40,916 | 6,363 Arthritis Irritable Bowel 16,663 | 3,685 Patients think that fibromyalgia When irritable bowel, and and arthritis are separate fibromyalgia are triggered, conditions. Suffering from both patient’s discomfort is fibro and arthritis can cause exacerbated. Patients do not debilitating pain and consider the two conditions to discomfort. be symptoms of one another. They are attempting to improve Both the conditions can be their wellbeing, and ‘take their triggered by dietary choices. lives back’ by exercising and Whilst patients sometimes have losing weight. Their pain and flares of fibro and IBS on the discomfort reduces their same day, there are few chances of success. conversations about dietary triggers which could cause flares of fibro and IBS. 35 Global Volumes | UK Volumes. The analysis are focused on the UK.eTreatment & Advice Project SampleWHITE SWAN Treatments Treatment Number of Mentions Massage was the most talked about treatment by patients in the online community but is only seen as a short term solution. Massage 7,009 Massage: Meditation 5,090 • Regular massages help. Language around it is that suffers are after massages that ‘loosen up’ their muscles to alleviate pain Acupuncture 3,778 • Combining heat with massaging is said to help (e.g. hot stones) • Concerns over massage therapists not being skilled/experience to deal with fibro patients. Mindfulness 2,936 • Massage is short-term solution, but doesn’t last beyond 6 months nonsteroidal anti- 2,301 inflammatory drug • Lockdown has been difficult as sufferers haven’t be able to get proper massages. Amitriptyline 1,948 Anticonvulsant 1,282 Cyclobenzaprine 1,178 selective serotonin reuptake inhibitor 1,154 cognitive behavioural 1,051 therapy 37WHITE SWAN Medical Support People diagnosed with Fibromyalgia often visit more than one medical Hospital Number of professional – often having to make up to 5 appointments Support Mentions Psychotherapists & Therapists: • Visiting psychotherapists and therapists is recommended as a means to decrease the effects of factors (e.g. Psychotherapist 7,713 stress) that contribute towards Fibromyalgia flare-ups, as well as to discuss anything that is felt as a result of pain. Therapist 7,081 Health Professionals: • Mental health and medical professionals are usually the support people seek prior to the correct diagnosis of Fibromyalgia. Neurologist 4,084 Psychologist: Health Professional 3,605 • Consulting a pain psychologist is often discussed as people seek treatments for their chronic pain symptoms. • Chiropractors are predominantly consulted for severe back pain resulting from Fibromyalgia symptoms and Psychiatrist 3,474 flare-ups. Support Group 3,077 Dietician: • A change in diet is a recommended natural treatment that Fibromyalgia patients. However, to ensure that proper dietary changes are made, seeing a dietician is vital. Psychologist 2,604 Doctor and Medical Practitioners: Chiropractor 1,967 • Sufferers' express frustration at the medical profession for not acknowledging their illness, for downplaying their symptoms and care that they need. Dietician 234 Radiologist 110 38WHITE SWAN General Support Support and Other Sufferers: • Sufferers make friends with people in support groups; often have multiple support groups across different comorbidities. (Insomnia being a key co-morbidity). Treatment Number of • People view support groups as positive as they are able to openly discuss their pain and emotions Mentions without judgement. Support 117,533 • Support groups also show more understanding of how people are feeling compared to others who do not think Fibromyalgia is a serious condition (which often includes families or even medical professionals who are not knowledgeable of Fibromyalgia). Family 91,369 • Some however, feel that they can be draining. Doctor 72,740 Medical 40,915 Emotional: • Sufferers are emotional when they are diagnosed or have fibro caused by other trauma (physical and emotional). Emotional 8,990 • Anger at themselves and their bodies for their illnesses. Spiritual: Other Sufferers 4,428 • There is often anger at god or at cultural beliefs for the illness - sufferers believe that this is some form of punishment. • On the other hand, faith and spirituality helps with the acceptance of diagnosis - they see it as a test of faith. Financial 3,909 Family: Practical 1,900 • Sufferers often express gratitude to their families for their support through their illness. They do however feel guilt that their illness prevents them from spending any real family time. • However ,some sufferers feel frustration that their family sometimes do not understand their symptoms and how it Spiritual 1,706 impacts them. 39References [1]. Soni A, Santos-Paulo S, Segerdahl A, Javaid MK, Pinedo- Villanueva R, Tracey I. Hospitalization in fibromyalgia: a cohort- level observational study of in-patient procedures, costs and geographical variation in England. Rheumatology (Oxford). 2019. [2]. Mary-Ann Fitzcharles MB, Lynn Cooper, Ruth Dubin, Trudy Flynn, Kerstin Gerhold, Winfried Hauser, Katherine Cowan, Andreas Laupacis, Renee Marleau, Marc Milot, Nicole Szajcz-Keller, Janice Sumpton, Zach Walsh & Hani El-Gabalawy. A paradigm change to inform fibromyalgia research priorities by engaging patients and health care professionals. Canadian Journal of anaesthesia 2016;1(1):137-47. 40Thank you for taking the time to read the report. We hope you found it interesting. If you would like to discuss ways in which we could partner, please get in contact. Beth Fordham Lucy Bell Insight Consultant Operations Director beth@whiteswan.org.uk Lucy.bell@whiteswan.org.uk A huge thanks also goes to the White Swan volunteers who conducted the analysis and report writing. Charles Pickering Anna Iokilevitc Allison James Megan Blignaut Lucy Bell Kathleen Prowse Megan Witthuhn Rich Taylor Dannika Essl Matthew Shepherd Emily Matterson 12th Floor WeWork Building, 10 York Road, London, SE1 7ND