Finding the 20 most important great challenges in healthcare was one of the tasks at TEDMED 2012 in Washington DC last week, where I had the great pleasure of being one of the delegates. These challenges should be selected from a list of 51 challenges, a difficult task, since ALL the challenges are of importance. The 20 selected were of course those who got the most votes.
In this and some of the forthcoming blogs I will discuss some of these challenges, starting today with “Causes of Sleep Deprivation”, which was one of the challenges with many votes.
Sleeping too few hours can have serious health consequences, the optimal sleep interval have been found to be between 6 and 8 hours pr. night, and both lower and higher sleep time is associated with significantly higher mortality. Use of sleep pills are a single major risk predictor, so this is not the answer, and studies have found that not necessarily the lack of sleep itself that provides health risk, but often it is the reason for the sleep problem causing the trouble.
Teh TEDMED 2012 Stage
The TEDMED challenge looking at the causes of sleep deprivation is therefore very important. The causes of the disturbed sleep are many, but we have a substantial knowledge from studies, that (chronic) pain is one of the most frequent causes of sleep problems at all. Research has found that at least 50% of patients with persistent pain problems report significant sleep disturbance, some studies even find that number to be 70-80%. Since the prevalence of persistent pain in the western world have been shown to be around 20% it can be estimated that more than approximately 50 million persons in EU and more than 28 million persons in USA are affected by the combined problems with pain and sleep. Co-existence of persistent pain and insomnia has shown to have a negative impact on both the course and the management of pain conditions and to be a major risk factor for disability and absence from work, and “sleep” is by pain patients rated as one of the most important factors of their Quality of Life. Yes, pain is one of the leading causes of sleep deprivation. We actually know from research, that just one night where sleep is interrupted several times leads to experience of higher pain intensity for a given stimulus, than experienced for the same stimulus after a good nights sleep. Just one night!
When I came back from TEDMED I received an acceptance for presenting data from a sleep study I have made at “The World Congress of Pain 2012” held by IASP this fall. This study documents that “sleep” is only included as a parameter in clinical and epidemiologic pain research in close to half of the published papers in major pain journals. This is the studies and papers on which we build and decide the best pain management. The reason for not including sleep problems in research is “tradition”, as the most frequent used assessment tools do not include “sleep”. We need to change that tradition, we need to create awareness in both research AND clinic work of pain and other causes of sleep deprivation, to catch up on one of the great challenges in todays health care.
I will of course present the study in details here on the Picture of Pain blog at a later stage.
Kim Kristiansen, M.D (2012). Causes of Sleep Deprivation – One of the TEDMED Great Challenges in Health Care Picture of Pain
H(APP)iness Online
With more and more patients often living with symptoms from chronic diseases, with fewer health care professionals to manage the conditions and with the explosion in technological possibilities, it is obvious that telemedicine and welfare technology is in focus these days. Apps and online tools help healthcare professionals to take care of more patients and helps patients get in contact with health care, but many health care professionals are thinking that these e-solutions are sacrificing the personal contact and interaction from the traditional consultation. I was reminded about this a few days ago when a patient came to visit me in my clinic to discuss the progress in his pain management. He had been to my office two times for the previous two months, where we had made agreements on the goal for his treatment, and had started new medication that he should gradually increase. He continued with the physiotherapist and started to exercise at home. We had been monitoring his condition by eDoloTest from the first consultation and he had both from home and from work been able to complete the DoloTest-Profile by the online access. When we met again he started by telling me how glad he was for the possibility to be in contact by eDoloTest, when he had scored a new DoloTest-Profile I send him a short e-mail with my comments on his progress, and this had been of great importance to him knowing that he was not alone.
In a Danish survey 1100 patients with chronic diseases like COPD, arthritis and diabetes, were asked about their attitude to telemedicine. Among this large population of patients,
- 70% believe that use of telemedicine as video consultations and monitoring of the conditions at distance would ease their lives
- 60% of the participants would like to use the possibilities these information technologies provide as a way to stay in ongoing contact with their doctors and other healthcare professionals and to get feedback without having an appointment at the hospital or clinic every time.
- More than 55% of the respondents experience less continuity in the treatment and in the process of managing their condition due to lack of shared care between the different healthcare professionals, and half of the respondents have experienced data missing when they are at the hospital or clinic visit.
- 35% of the 1100 participants thought that use of telemedicine in the managing of their condition would reduce their visits by 50% at their doctor and other healthcare providers. With the enormous and still growing need for care at all levels of healthcare, this is very interesting and very important.
My patient and all the persons in this survey are telling us, that welfare technology solutions and telemedicine can and may be used to improve not just disease management but also improve patient centered care.
Kim Kristiansen, M.D. (2012). H(APP)iness Online Picture of Pain
“No decision about me without me” is the strong motto for the increased effort in England to implement patient centered care (PCC) everywhere in the British healthcare system. PCC is by US-based IOM defined as “care that is respectful of and responsive to individual patient preferences, needs, and values” and that ensures “that patient values guide all clinical decisions”. A recent published rapport from UK’s “The Health Foundation” based on results from a December 2011 summit, describes benefits and ways to achieve PCC. Research shows strong proven benefits from shared decision making, including: – better treatment adherence, creating greater effectiveness and value – improved confidence and coping skills for patients – fewer patients choosing major surgery, creating cost savings – improved health behaviours such as greater exercise and reduced smoking, and more appropriate service use, particularly fewer emergency admissions. It sounds good and sound, and I guess most healthcare professionals have chosen to be educated in healthcare to deliver just that, to make the patient feel better, to improve their life and ease or even cure the disease and basically to improve the quality of life. Nevertheless, as mentioned in a recent editorial in NEJM about PCC, it seems to be challenging to implement PCC even though it is mentioned everywhere, and one of the greatest challenges to turn all the rhetoric into reality is to engage patients routinely in decision-making.
Consider a recent published study from Sweden looking at the power of validating communication with patients with low back pain (LBP). Validating communication is a communication that focuses on understanding and empathy as a platform for problem solving – and shared understanding is a corner stone in PCC. It can be exemplified for LBP as the difference between on one side accepting and acknowledging the patients repport on their pain and its impact on their quality of life, and on the other side responding to the patients repport by saying “well, there is nothing wrong on your MRI….”. In the Swedish study LBP-patients from the validating communicating group significantly decreased their sadness, anger, frustration and pain after they had been interviewed, so PCC is actually a powerful part of treatment, and lack of PCC can compromise effectiveness.
But how can we implement it? The British rapport “Leading the way to shared decision making” suggests, that NHS must demand implementation of PCC at all levels of health care, and that they must monitor the use of PCC. The main element to change is attitude from primarily healthcare professionals but indeed also from patients to be ready to engage in sharing information, understanding and take part (and responsibility) in decision making. We must as healthcare professionals expand from just looking for diseases we can treat or cure, and dismiss the patient when we do not find that. Health is more than absence from disease, as defined by WHO in 1948, it includes complete physical, mental, and social wellbeing. Guidelines are of great value to help us in the daily work, but they are (of course) basic and promote a one-size-fits-all treatment, they shall be used as the groundwork on which we build individualized treatment. Patients on the other hand must engage in the management of their disease or condition and not just outsource it to health care. We do live in the information age and no one wants a one-size-fits-all treatment.
Several tools exist to facilitate PCC in different disease areas. In pain management DoloTest is the only tool to involve the patient directly by the easy-to-understand visual DoloTest-Profile. But the assistance from the tools is not enough; there is a need for promotion of PCC as we see it in England, to get the needed changes in attitude.
Reference:
Summit report: Leading the way to shared decision making. The critical steps for the NHS Commissioning Board to make ‘no decision about me, without me’ a reality February 2012, http://www.health.org.uk/publications/leading-the-way-to-shared-decision-making/
Barry, Michael J, and Susan Edgman-Levitan. “Shared Decision Making–pinnacle of Patient-centered Care.” The New England journal of medicine 366, no. 9 (2012)
Linton, S J, K Boersma, K Vangronsveld, and A Fruzzetti. “Painfully Reassuring? The Effects of Validation on Emotions and Adherence in a Pain Test.” European journal of pain (London, England) 16, no. 4 (201
Kim Kristiansen, M.D: (2012). Patient Centered Care is here, lets distribute it Picture of Pain
Going to TEDMED in DC
Chronic Pain has a Price
Find this blog post as Picture of Pain Podcast here.
Everyone who knows a person with chronic pain is aware that it comes with a huge price on “quality of life”, but indeed chronic pain also have a heavy economic price for the society in general. A price we might be able to reduce by awareness and intervention for those who need it and especially for those who need it most.
The size of the economic burden is of cause different from country to country, based on differences in health economy and in the organisation and extent of health care and social care. But all presented figures from different countries are high and in it self calls for action.
Recently a Swedish study was published looking at “Diagnosis Related To Pain” (DRTP), that is NOT for chronic pain alone but total costs for persons with diagnosis connected with chronic pain conditions. The total cost for society was a huge 20% of Swedish tax burden. Indirect costs associated with lost production because the patient is absent from work constituted the largest proportion of the cost estimate (about 60%).
If we hold this in mind when looking at another recent published study looking at the economic burden associated with chronic pain, there is important information to get. In this study from Ireland the researches found, that a small proportion of patients account for the bulk of costs—the top 5% most expensive patients accounted for 26% of costs, the 10% most expensive patients were responsible for 43% of all costs, and the top 20% of patients accounted for 64% of all costs (see figure).
Now who are those patients with the highest costs ? Well, the Irish researchers found two important determinants of costs one is the intensity of experienced pain, high levels of experienced pain was four times higher than for the group with low level of pain. The other factor was patients with depression, as the authors pointed out, this is unsurprising, but highlights the importance of intervention also from an economic perspective.
You would probably also guess, that higher pain scores are connected to higher economic costs, but these two papers make it clear and provide the evidence as well as documents the surprisingly high costs and their distribution among the patients.
Some years ago I came up with the idea of DoloTest® a both comprehensive and contemporary pain and health related quality of life assessment tool, which I have developed together with two colleagues. The idea was to improve quality of life for pain patients, but since it is also a very fast and easy way for screening for both pain and mood problems, it can be used to identify the patients in the high cost end.
We need to reduce both the human and the economical cost of chronic pain, one of the major health problems of our time.
Raftery, Miriam N, Padhraig Ryan, Charles Normand, Andrew W Murphy, Davida de la Harpe, and Brian E McGuire. “The Economic Cost of Chronic Noncancer Pain in Ireland: Results From the PRIME Study, Part 2.” The journal of pain : official journal of the American Pain Society 13, no. 2 (2012): doi:10.1016/j.jpain.2011.10.004.
Gustavsson, A, J Bjorkman, C Ljungcrantz, A Rhodin, M Rivano-Fischer, K-F Sjolund, and C Mannheimer. “Socio-Economic Burden of Patients with a Diagnosis Related to Chronic Pain – Register Data of 840,000 Swedish Patients.” Eur J Pain (2011)doi:10.1016/j.ejpain.2011.07.00
Kim Kristiansen, M.D. (2012). Chronic Pain has a Price Picture of Pain
Huge thanks to all for responds, tweets and mentions on my recent blogpost at KevinMD, “Social Medias leading physician voice”
You can find it here:
Understanding the pain of fibromyalgia at KevinMD
The Fibromyalgia Challenge
Many healthcare professionals find fibromyalgia difficult to believe as “a real disease” and most of all difficult to handle, and to be honest it is not so difficult to see why. Doctors and other healthcare professionals have learned how to search for diseases based on the specific symptoms the patients present, but fibromyalgia – and several other chronic pain syndromes – do not fit into that model. The patients are presenting a broad spectrum of subjective symptoms and feelings that can not be objectified. A patient presenting a pain problem must in general be examined for the reason for the pain based on the localisation of the pain, but in conditions like fibromyalgia the pain is so widespread, that it is difficult to detect where it started and thereby to look for evidence for disease. The pain is “all over”, which actually is a part of the diagnostic criteria’s. What more is, the examination of the patient will often not show any specific signs of disease, and when diagnostic procedures like MRI and X-rays are used we find no signs of pathology or just hints of an explanation. Pharmaceuticals normally used for pain problems like NSAID and opioids are often prescribed, but they have only little or often no effect. And what more is, the condition is complicated with sleep problems, an extreme tiredness, mood disorders and more.
No wonder it is a challenge both for the health professional and for the patient whose proxies often also will find it difficult to understand and accept a situation with “pain all over”, with no signs of an explanation, not responding to what seems to be relevant pharmaceuticals and complicated with some psychological problems.
Presented with patients with these symptoms and sensations health professionals will often find their authority and self-image challenged, since the symptoms and complaints presented by the patients do not fit into to the normal biomedical frame for understanding and treating medical conditions, and into the traditional understanding of scientific and evidence based disease management, that are an deep and integrated part of our pride for what we do and how we work.
In the same manner the patient’s relatives might find the condition difficult to accept and understand, which might lead to even further stigmatization and have huge social consequences.
From neuropsychological research we now know that our brain is constantly busy trying to find meaningful patterns, both when the data make sense and when they don’t. This is beyond our control, and it helps us constantly interacting with the world around us and helps us live a normal life, but it can also lead us the wrong way. Healthcare professionals presented with the symptoms of fibromyalgia might unconsciously, due to the lack of meaningful data, draw the wrong conclusion that it is a “clear psychological case”, and relatives might be led to disbelief. The person suffering from the condition might on the other hand be led to the belief that it must be possible to find an objective explanation for the pain and its consequences, that some kind of pathology must be found, based on the their learned experience that injury leads to pain and pain is due to an injury.
No, it is indeed not so difficult to understand why persons with fibromyalgia are met with disbelief and doubt by healthcare professionals, relatives and perhaps often by them selves.
But it is a fact, that fibromyalgia is a well-defined condition, composed of symptoms with widespread pain combined with cognitive and psychological symptoms. It is also a fact, that scientific research has provided us with a evidence and understanding of neurological changes and transformations leading to the complex neurological and psychological alterations composing syndromes like fibromyalgia, and also other chronic pain syndromes like nonspecific low back pain and whiplash syndrome.
Whether we trust this evidence or not is it should be quite obvious, that these persons are living with a low quality of life as it can be seen on the picture showing a typical DoloTest-Profile from a person with fibromyalgia (the larger the DoloTest-Profile the lower the quality of life). We need to accept this, so we (both healthcare professionals and patients) can act to improve the condition even though the improvements often are minor, have long responding time and changes forward and backward over time. The conditions can not be cured but it can be treated. We need to educate patients, healthcare professionals, relatives and indeed politicians and other decision makers to have and to share an understanding of these conditions, and that we need to accept this to help those affected by the condition. We must learn those involved and responsible that it is not enough to look at the symptom “pain” but rather we must focus of the whole complex by trying to improve the quality of life based on knowledge.
To highlight this I would like to repost a movie previously posted here at the Picture of Pain blog looking at what went wrong for the Princess and the Pea:
Reference:
Cohen, Milton, John Quintner, David Buchanan, Mandy Nielsen, and Lynette Guy. “Stigmatization of Patients with Chronic Pain: The Extinction of Empathy.” Pain Med 12, no. 11 (2011): doi:10.1111/j.1526-4637.2011.01264.x
Wolfe, Frederick, Daniel J Clauw, Mary-Ann Fitzcharles, Don L Goldenberg, Robert S Katz, Philip Mease, Anthony S Russell, I Jon Russell, John B Winfield, and Muhammad B Yunus. “The American College of Rheumatology Preliminary Diagnostic Criteria for Fibromyalgia and Measurement of Symptom Severity.” Art
Kim Kristiansen, M.D. (2012). The Fibromyalgia Challenge Picture of Pain : http://blog.dolotest.com/?p=880
By Kim Kristiansen, M.D and Henriette Poulsen, M.D.
You can find previous blogposts about this subject at the Picture of Pain Blog and listen to a conversation between the authors as a Picture of Pain Podcast
It is challenging to navigate between effect of treatment and risk of aberrant drug behaviour when treating chronic pain with opioids. In this blog post we will describe methods to navigate in this difficult field from a clinical point of view.
If a person, who is prescribed opioids for chronic pain takes more than the dose prescribed or uses more extra “as needed” medication, is she or he then addicted? Or developing tolerance? Or pseudo-addicted? Is the medication taken for something more or other than the pain? … And how do we – we being both healthcare professionals and patients – act responsibly in respect to both the pain condition and the risk of aberrant drug behaviour?
Well let’s face it; opioids have been part of pain treatment for millennia and for a very good reason: they actually do relieve pain. So no doubt opioids have some kind of role in chronic pain management, but there seems to be two extremes of seeing this either very liberal “my patients are getting what they need to relieve pain” or very restrictive “don’t use opioids, patients get addicted”. Unfortunately both these extremes entail a great risk of not providing optimal treatment for chronic pain. The fact is that chronic pain is more than the pain alone, chronic pain is not just acute pain taking longer time. Intensive research in this field has brought us knowledge about these conditions, and today we see it as a disease in its own right. A disease composed of an individual mixture of components with physical, mental and social components leading to alterations in the nervous system which are finally perceived as pain by the sufferer.
Opioids are very effective for relieving acute pain and they can also – but to a lesser degree – ease the pain in some chronic pain conditions, an effect that often will change over time. Opioids also reduce the burden of the emotional components in chronic pain conditions But that is not the right way to use opioids and dramatically increases the risk of aberrant drug behaviour and it is not the right way to treat these problems. The patient might want extra opioids to relax, sleep, and just reduce the emotional burden, which is better treated otherwise. In a recent published study more than one third of veterans reported aberrant drug behaviour where the most frequent was using alcohol, using street drugs and sharing prescriptions all with the purpose of getting better treatment [1].
Furthermore chronic pain most often have some degree of sensitization of the nervous system leading to increased pain experience, and this is better treated with other drugs than opioids, but often in combination with opioids. In the very common syndrome fibromyalgia both opioids and NSAIDs have been shown to have no or close to no effect on the pain. This might lead to increasing doses resulting in small improvements in the condition again leading to increased doses …. and so on. It might be better treated in combination with or only with drugs targeted at neuropathic pain and at sensitization.
So when a patient takes more opioids by increasing the daily dose or taking more “as needed” it will most often be to improve the condition. It might be reducing the pain, but can also be a question of relaxation, sleep, mood and so on. Taking extra opioids to achieve a better effect of treatment some call “pseudo-addiction” – the person behaves like persons addicted but the reason for their dispositions are other than for addicts. In these situations it is extremely important to make a comprehensive assessment of the involving factors and have on-going conversations with the patient, and together facing the problem and search for responsible solutions. 
DoloTest® is a communication- and assessment tool quantifying the influence of the pain condition on the quality of life (Fig.1) It takes less than 2 minutes for an average patient to complete and due to the visual presentation of the test result it can be used for communication, goal setting and evaluation of response to treatment by both the patient and the healthcare provider. If there is a small or no response on “pain” when treating with an opioid, but perhaps an improvement on mood, it might be worth reconsidering the treatment strategy and focus more on mood issues and perhaps treat these problems by treatment targeted for this. Otherwise the dose of opioids can be titrated to the optimal dose for effect on “pain” in a balance with adverse effects. Similarly different treatment modalities can be considered, tried and evaluated such as acupuncture, cognitive behavioural therapy, mindfulness, exercise, physical therapy alone or in combination.
The patient must be informed about the risk of aberrant drug behaviour and it must be made clear, that both the patient and the healthcare provider have a common responsibility in this field that is the basis for the pain management process. Many patients are afraid of addiction problems when treated with opioids and this might contribute to under treatment Therefore the patient must be informed about the comprehensive and on-going assessment, as the condition is dynamic and not static, and that this actually also is a way to individualize the treatment to achieve the best possible quality of life as well as a way to reduce the risk of addiction. The patient must be informed that “tolerance” is a normal and physiological mechanism leading to a need for an increased dose of a drug to get the same effect and that physical withdrawal symptoms are to be expected if the treatment is stopped abrupt – and that this is not the same as addiction.
The numbers of persons suffering from chronic pain are enormous and each individual has his or her own mixture of the different components in chronic pain, and the treatment must be tailor-made.
We can find the optimal balance for each individual in the treatment of chronic pain, but it requires awareness and cooperation from all involved.
Reference:
1: Goebel, Joy R, Peggy Compton, Lisa Zubkoff, Andy Lanto, Steven M Asch, Cathy D Sherbourne, Lisa Shugarman, and Karl A Lorenz. “Prescription Sharing, Alcohol Use, and Street Drug Use to Manage Pain Among Veterans.” Journal of pain and symptom management 41, no. 5 (2011):
Kim Kristiansen, M.D and Henriette Poulsen, M.D. (2012). Tailor-made Chronic Pain Management and Reducing the Risk of Opioid Addiction Picture of Pain Blog
Merry Christmas and Happy New Year !
MERRY CHRISTMAS AND HAPPY NEW YEAR TO ALL READERS OF THE PICTURE OF PAIN BLOG
Thank you for your interest and support. We will be back in the new year with new posts and comments about pain management, starting with the third post and a podcast about chronic pain management and risk of aberrant drug behaviour.
Best Wishes
Kim Kristiansen
DoloTest