back pain and ankylosing spondylitis · • back pain conversation on twitter is led by an...
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Back Pain and Ankylosing Spondylitis
Analysing online conversations
February 2017
White Swan is a registered charity in England and Wales (1176486). A Charity Incorporated Organisation.
• This study was commissioned to offer insight into back pain and ankylosing spondylitis (AS) conversations online.
• In order to explore this conversation, White Swan tracked all online mentions of both ‘back pain’ and ‘ankylosingspondylitis’ on Twitter, Blogs & Boards globally, within the date range of 10 August 2016 to 10 November 2016.
• Multiple layers of analysis were used on this data. These included producing data science outputs, conducting analysis on the NEST (Black Swan’s proprietary tool) and utilising qualitative coding to unearth themes and trends.
• This report summarises the findings of these analyses and offers recommendations off the back of these findings.
DATA SCIENCE NEST ANALYSIS QUALITATIVE CODING
Introduction and methodology
Key findings and recommendations
In order to speed up the accurate diagnosis process for people with AS, education efforts should target not only patients themselves, but also medical professionals:
• People who think that they may have AS appear to be well-researched on the disease and are actively seeking more information about it (in this case, by turning to their peers on forums and blogs). This pro-activity can be harnessed into enthusiasm for tracking apps, particularly if patients believe that this will help them get closer to an accurate diagnosis.
• At the same time, patients frequently complain that their symptoms and pain are not taken seriously by medical professionals. Education efforts should thus also focus on doctors – particularly GPs – to ensure that when patients do report early AS symptoms, appropriate next steps are taken.
Setting the scene:
Back pain conversations
• Back pain conversation is large, amassing over 100k mentions on Twitter, Boards & Blogs each month.
• The lower back appears to be a particular problem-area for people, with ‘lower back pain’ and ‘low back pain’ accounting for the second and fifth most-used keywords, respectively.
• Yoga is also a popular keyword – generating 11.6k mentions during the 3 month timeframe.
• When it comes to back pain, we see a relatively even gender split on boards.
4128819103
45242197355
low back pain 17518yoga 11692
health 11105exercises 10497
sciatica 10441doctor 9462
back pain lower back pain
backpainpain
112k mentions permonth
TOP KEYWORDS
83%
14% 3%
Twitter Boards Blogs
GENDER SPLIT (BOARDS)
Overview:Back pain conversation at a glance
• All of the top domains are forums (boards), demonstrating that people turn to peers to help understand and manage their back pain.
• Parenting sites feature heavily, with people discussing pregnancy-related back pain.
• People also turn to popular online patient forums, including patient.co.uk and healthunlocked.com, to help them figure out what may be causing their pain.
• General forums, such as Reddit, also see activity.
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0NU
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Where people talk: Top domains
When people talk: Key dates and times
• Most back pain conversation on blogs and boards takes place in the afternoon-evening and generally earlier on in the week.
• Conversation slows down on the weekends, with Saturday seeing the lowest volumes.
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Tuesday
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Who is leading the conversation:Top influencers
• Back pain conversation on Twitter is led by an assortment of influencers, including health and fitness magazines, traditional news media and fast-fact accounts.
• Jina Riggs – a pharmacologist from Miami – is the most influential doctor within online back pain conversation.
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Setting the scene:
AS conversations
Overview:AS conversation at a glance
5061576
2804
arthritispain 405
disease 357lupus 296
diseases 278discount 277
mastercard 245drug 228
ankylosingspond…ankylosing…
1.7k mentions permonth
TOP KEYWORDS
75%
20%5%
TwitterBoardsBlogs
GENDER SPLIT (BOARDS)
• AS conversation is much smaller than back pain conversation, but still generates 1.7k mentions per day. While this is a rare disease, people do actively post about it on online channels.
• Twitter is the most dominant platform for activity, but we also see 20% of conversation taking place on boards –much higher than the 13% for back pain. Sufferers from AS appear to be particularly drawn to online communities, where they can share their experiences and receive support.
• Those posting about AS on boards are overwhelmingly female, though some conversations about fitness tips draw in men.
Where people talk: Top domains
• Reddit remains a popular domain for AS conversation, with the patient site Health Unlocked right behind.
• Fitness websites also feature in the top domains, thanks to exercise being an important part of the treatment plan for AS.
• The Spondylitis Association of America is the most popular AS-specific site.
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When people talk: Key dates and times
• As with back pain, AS conversation on blogs and boards takes place largely during the afternoons/evenings, earlier in the week.
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Who is leading the conversation:Key influencers
• The two Twitter accounts for the National Ankylosing Spondylitis Society are, unsurprisingly, lead influencers in online AS conversation.
• Medscape and Insurance News, which provide breaking medical updates, also feature on the influencers list.
• DPPYoga also features, again showing the popularity of yoga amongst sufferers of back pain and AS.
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Treatment conversation:
Exercise and drugs
Exercise versus drugs: Back pain and AS
• Within general back pain conversation, exercise is much more buzzed-about than drugs. This is, thanks again, to yoga enthusiasm. Additionally, general back pain sufferers could have more mild conditions, for which serious medication is not needed.
• In the AS conversation, conversely, drugs are much more talked about. As the slides below will show, people with AS often turn to forums to get second opinions about the drugs they have been prescribed. Humira is a particularly buzzed-about drug.
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Drugs
Exercise
AS CONVERSATION
BACK PAIN CONVERSATION
1018
525
Drugs
Exercise
Exercise back pain:Yoga
• When it comes to other forms of exercise, Pilates is a distant second, accounting for 450 mentions.
• People use yoga and Pilates to not only mediate their back pain, but also as part of a long-term strategy to rid themselves of it. They are thus seen as both reactive and preventative therapies.
“Four years ago with support from my new DH I saw a brilliant Physio who strongly recommended that I cut back on weight training take up yoga (I had wrongly assumed that I needed to strengthen my weak back). He said that I wouldn't be very good at it as I had a naturally muscular and tight build. I also made the decision to give up my desk job as sitting for 8 hours a days was making things much worse.Well it was hard, it was painful and I felt like an idiot a lot of the time because Iwas so much less flexible than everyoneelse.Very slowly but surely I improved and my back pain got better. When I say better Imean no pain at all most days. I was shocked and quite frankly angry that no otherhealth professionals had recommended this. Imagine being in too much pain to playwith your children for most of their lives. When they were younger I'm suretheythought my name was "Oh mi back!"”
• As previously touched upon, yoga receives 13k mentions – accounting for 4% of total back pain conversation
• On forums, back pain sufferers share the improvements they have seen in the themselves thanks to yoga and encourage others to try it out. This is particularly the case for those with lower back pain
Exercise AS:Pain and mobility
• Within AS conversation, exercise is spoken about in a more general sense. People share their workout regimes and offer each other tips but talk more about ‘going to the gym’ than about performing a particular sport or activity.
• People discuss using exercise to mediate their pain but also to help maintain their mobility and thus their independence. This is particularly the case amongst young men, who want to be able to take care of themselves and to return to their active lifestyles.
“My back pain issues were caused by piriformis syndrome, which was amplified by the AS. However, I managed to get the piriformis syndrome under control, and was able to start going to the gym again. I was motivated as hell to get stronger because when you are crawling to the bathroom in the middle of the night wondering “is this going to be the rest of my life?” that serves as some of the strongest motivation to never go back to that dark place.”
“I found out I had AS too about a year ago but when the pain started only one thing kept it at bay and that was the gym.”
“I have a similar experience. I was diagnosed with AS as well 4 years ago and struggled with pain until I decided to start working out again. That did wonders for my symptoms. Now, if I stop going to the gym for more than a week, I can feel my back pain slowly start to come back. Good to hear that others are able to find some relief as well. Best of luck!”
Drugs:Conversation split
• Looking at drug conversation, the most buzzed-about types of drugs – within both AS and back pain conversation – are painkillers. This is due to a reliance on paracetamol amongst general back pain sufferers.
• Biologics are the second most-discussed types of drugs. This is thanks to enthusiasm for Humira, which is explored further on the next slide.
• NSAIDS and DMARDs receive significantly less buzz and most of this is promotional rather than organic conversation.
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DMARDS
NSAIDS
Biologics
Painkillers
Drugs:Humira
• Humira receives 108 mentions, accounting for 2% of total AS conversation.
• There is a lot of positivity surrounding the drug, with many sharing that the drug worked well for them. A few mentions, however, also highlight Humira’s troublesome side effects.
“Don't take it myself for my RA but I have a work colleague who started it 2 years ago for ankylosis spondylitis, its changed his life!! He spent loads of time off work due to it and things didn't look good, he was only 38, but that drug turned it all aroundfor him.”
“I've been on humira for RA for 2.5 years and it took a good 6 months to feel the full effect. I've heard of people having results much quicker but mine was a slow improvement and I continually slowly improved for up the first 6 months. I don't really have any side effects, except for being very tired the day after the injection. It's been a good medication for me. The injection is easy; limited pain and easy to do.”
“My rheumatologist prescribed Humira for me and it's working. When I say working, it's not getting any worse. You and I know it's not going to get better until they make us bionic spines.”
“I am not anti-Humira but "certain bacterial and fungal infections" on Humira can mean tuberculosis or lymphoma, not just, like, athlete's foot. Celebrex/celecoxib can cause serious heart and GI issues (also, it contains a sulfonamide, so some people are allergic).”
Drugs:Soliciting peer opinions
• A number of AS patients turn to online forums to get second opinions about the drugs they take. This is particularly the case when a patient starts taking a new drug. Forums are important sources of drug information for patients and peers are quick to share their experiences with others and to offer them advice.
Drugs:Risk of abuse
• Another theme within the back pain and AS drug conversation is over-medicating. Some sufferers describe taking multiple drugs at the same time, taking large quantities of one drug or even taking heroin in order to manage their pain.
“Pain in my ass (ankylosing spondylitis). The opiates give me the drive to do stuff.
But most of the good and bad side effects are dulled now. I just get sleepy, memoryproblems.
I also feel that I am in a cage. So I am the rat who overuse opiates. My withdrawals are just feeling slight sick, diarea and a bad mood. I don't use much, but I have the urge to use daily. It's hard to not keep doing it. I haven't tried heroin yet, but I might do one day. It would last longer.”
Tracking the patient journey
Patient journey:Diagnosis stages
• In order to determine the stage each patient who was posting was at regarding their diagnosis, qualitative coding was used.
• The majority of people who were posting on forums were living diagnosed. They were talking about the day-to-day experiences they had with the disease and were sharing treatment tips.
• There were surprisingly a lot of people talking about AS who were pre-diagnosis. These people were often aware of the disease and after many years of struggle to identify their condition, were turning to forums to ask others if they could have AS. Others were not sure what they had but peers suggested it could be AS.
21%
8%
71%
Pre-DiagnosisJust-diagnosedLiving diagnosed
Pre-diagnosis:Seeking peer help
• For most sufferers of AS, the diagnosis process is very lengthy (1-4+ years). Frustrated with waiting, people turn to forums to get advice from their peers about what they could be suffering from.
• Many people have done their research and speculate that they might have AS, while others describe their symptoms and are informed by peers that it could be AS.
NEED HELP WITH BLOOD RESULTS - GP SAYS FINE!“This is my first post for help although I have commented on a few recent posts. I was wondering if some of you lovely people that I read posts from everyday can help? I have had back, knee, foot and other health problems for about 16 years now but it is only since I had a second decompression surgery in Sept 2015 that I have not been able to manage my pain levels. I have been off work ever since my surgery and because of lack of mobility and such horrendous pain from my back every day, all day, I have now taken early retirement because of ill health at only54. I have been given a number of different medications over the past year but they all have had awful side effects and don't relieve the pain anyway so have had to come off all of them.”
“Go to a different doctor. Make an appointment on zocdoc and have a friend take you if you cant drive. If you are having back issues at your age you need an xray or mri. Sounds like it might be Arthritis? Although its more uncommon to get arthritis at your age still possible. I have it at 25. If it is something like ankylosing spondylitis it is important to get diagnosed as early aspossible.”
“My gp has suggested that I may have ankylosing spondylitis after many years of lower back pain. I go to see a rheumatologist on Monday to see what they say, I was just wondering what everyone's symptoms are. I've had problems with my shoulders since I was 13 and 10 year of lower back pain which keeps flaring up into muscle spasms which are excruciating. I work as a carer and have had to change jobs as I can no longer do heavy lifting. Can anyone help?”
Pre-diagnosis:Frustrating process
• In addition to the diagnosing process taking a very long time, AS patients feel like their symptoms are not always taken seriously by medical professionals. This is another major source of frustration, as it means they have to wait longer to pin down what they are sufferingfrom and then getting effective treatment.
• This contributes to the slow diagnosis process and leads to some distrust of doctors amongst patients.
“I actually feel blessed to have a rheumatologist who didn't just look at my lack of bad swelling and my normal ESR and dismiss all of my symptoms as just fibro. He actually took the time to feel my joints for synovitis and actually listen to me. I think a lot of doctors don't like to dig when the answers aren't obvious so they diagnose people with fibro just to get them out of theiroffice.”
“For the next couple of years I kept going to the doctor telling her it was hurting and asking for her to do something and every time she said nothing was wrong and if anything take an Advil. I used to and still do cry from the pain, I don't know how to describe it exactly. It feels like a great amount of pressure on my back making me want to throw up or not move so I can't feel it as bad. If I'm in bed I go into a fetal position, it occasionally helps but not really. I'll lay on the floor, I've gotten massages. Some nights I'll wake up from the pain and just cry and curl into a ball. I've probably overdosed on pain medicine but literally nothing helps. I still go to my doctor 6-7 years later and shestill claims it's nothing.”
“I had my Rheumy visit yesterday,I felt it was a good visit, he listened to me, which doesn't always happen with Dr's.”
“Rheumatologist was so unhelpful. When I went he was so dismissive, wouldn't listen to me about mysymptoms.”
“You should have your doctor refer you to a rheumatologist. I was in pain for years and nobody believed me and the doctors would always look at me crazy. X-rays showed nothing and MRI showed nothing. Finally after years of suffering my doctor refered me to a rheumatologist and they did some blood tests and it turned out I had a disease that attacked my joints.”
Just diagnosed:Who diagnoses?
• Most people are diagnosed with AS either by their GP, by a Rheumatologist or by some combination (i.e. a GP noticesit first and then refers the patient to a Rheumatologist).
• Others receive suggestions from chiropractors and ophthalmologists that they could be suffering from AS.
• Some diagnose themselves and then turn to forums for peer validation.
“My gp has suggested that I may have ankylosing spondylitis after many years oflower back pain.”
“I have it. Thankfully mine is not progressing. I started having pain in 5th grade. I'd be playing soccer and fall because of the pain. After many different diagnosis a chiropractor saw the fusions.”
“I had a case of Uveitis on my left eye. My eye doctor (oftalmologyst?) was the one who diagnosed me with AS.”
“Finally after years of suffering my doctor refered me to a rheumatologist and they did some blood tests and it turned out I had a disease that attacked my joints.Mainly my back and hips. I am pain free now. My pain was really bad at nights and for the first couple hours every morning. I sleep great now and I feel great in the mornings. My condition is called ankylosing spondylitis. Look it up and see if it's similar to yoursymptoms.”
“I have bipolar disorder, ulcerative colitis, and ankylosing spondylitis (I've also been diagnosed with fibromyalgia, but I debate that one because my pain patterns don't really fit with it).”
Living diagnosed:Alternative therapies
• In addition to drugs and exercise, AS patients turn to alternative therapies, natural remedies and healthy diets.
• Overall, AS patients describe utilising a holistic approach to their treatment; one which combines the use of medical drugs with a healthy lifestyle.
“I have been given a number of different medications over the past year but they all have had awful side effects and don't relieve the pain anyway so have had to come off all of them.I am trying to treat my pain naturally and feel so much more like me (most of the time😃😃 ) but I am so so tired/exhausted/lacking energy and now looking at different vitamin and minerals that if deficient can cause this orelevate pain levels or irritatenerves in my lumbar and theracic area.”
“Thankfully getting off sugar and carbs resolved my active autoimmune diseases. I am quite certain had I done this 40 year earlier I would havehad a normal healthy life.
Many people will refuse to modify their eating just like I did for 40 years. Knowing that my kids have same genetic factor for Ankylosing Spondylitis (AS) as I do always concerned me.”
“thanks man! I'm glad to help others who are in a dark place needing some motivation. I also started taking humira recently. I can't tell if it's making me super lethargic or if it's something else. Either way, I'll experiment with that and also with some diet stuff to see if it can keep it atbay.”
