Psychology & orofacial pain Dr H Clare Daniel, Consultant Clinical Psychologist Clare

Persistent Pain ‘vs’ Persistent Orofacial Pain Same or different psychological processes and pain processing? Much of the orofacial pain literature is about 2 decades behind the persistent pain literature

The literature: 2012 onwards “Burning mouth syndrome (BMS) has been considered an enigmatic condition because the intensity of pain rarely corresponds to the clinical signs of the disease”. 2012 “Pain with possible psychogenic causes are chronic idiopathic facial pain (atypical facial pain); burning mouth syndrome; temporomandibular pain- dysfunction”. 2013 “Burning mouth syndrome is a psychosomatic condition” 2014

Dualism Functional symptoms Mad Somatising Not real Psychological Mind Body Medical Real Sane

Viewing many orofacial pains as having a ‘psychosomatic’ or ‘psychogenic’ component is keeping the door of some pain services shut to facial pain

ACTION (MOTOR RESPONSE) Normal pain processing INPUTS OUTPUTS PAIN Dimensions: Sensory-discriminative; motivational-affective; cognitive-evaluative SENSORY INPUT Cutaneous, visceral & musculoskeletal inputs; visual, vestibular inputs COGNITIVE INPUT Memories; past experience; attention; meaning; learning; catastrophising ACTION (MOTOR RESPONSE) Involuntary & voluntary action patterns; action patterns; social communication EMOTIONAL INPUT Anxiety; depression; fear STRESS Cortisol, noradrenaline, cytokine levels; immune system activity, endorphin levels Melzack (1999): The Neuromatrix Model

X ✔ fMRI studies Reported pain & stimulus intensity “9 out of 10” Reported pain & stimulus intensity fMRI studies X Reported pain & fMRI activity “9 out of 10” Tracey & Mantyh (2007) ✔ Reported pain intensity correlates with increased limbic activity during pain processing i.e. cognitive and emotional input

Cognitive and emotional influences on pain processing & responses to pain The Patient

Cognitive Behavioural Model Beliefs Thoughts Meanings Situation Interpretation Cognitions & cognitive processing Clare Body Behaviour Emotions

Meanings are subjective & idiosyncratic Internet searches SOCIETY Healthcare providers Media CULTURE RELIGION Past learning Past experiences of pain & illness PAST PAIN BELIEFS About the cause About symptoms About what’s needed to make it better Thoughts, beliefs, meanings CONTEXT Who’s present Competing demands Our meanings, interpretations & perceptions about the patient’s pain will be different from the patient’s

Beliefs “My pain must be caused by cancer” Causal beliefs Beliefs about symptoms “Clicking means that my jaw bone needs surgery” “My jaw is lose” Anatomical beliefs “My skull is balanced on my spine” Treatment/ investigation beliefs “Treatments failed because they weren’t done correctly” Patients may do something that appears to be ‘odd’………. due to underlying fears and beliefs

Cognitive Processing: Catastrophising Focus on threat Overestimate threat Underestimate resources to deal with it Associated with greater sleep disturbance in TMD. Catastrophising was mediated by sleep disturbance to increase pain severity & pain-related interference (Buenaver et al, 2012) Associated with the progression of chronic TMD pain & disability (Velly et al, 2010) In healthy subjects: predicts pain intensity & tolerance At acute stage: predicts chronicity & disability In chronic pain: predicts mood & avoidance Neuropathic Pain and the Biopsychosocial Model phantom limb pain Jensen et al. (2002) studied 61 people At one month psychosocial variables, particularly catastrophising and the use of rest as a means of coping, contributed to 43 per cent of the variance of pain intensity and 28 per cent of interference due to pain (after controlling for pain intensity). Twenty eight per cent of depressed mood could be accounted for by pain intensity and 46 per cent by psychosocial variables, especially catastrophising. Attempts to identify the predictors of change from one to six month suggested that lower levels of solicitousness from others and higher levels of social support and catastrophising were associated with improvements in pain interference and symptoms of depression. With the exception of catastrophising, this fits with the research on nociceptive pain. Similarly, Hanley et al., (2004) found that pain interference at twelve months following a limb amputation was not explained by resting as a means of coping at one month, but by high levels of perceived social support and lower levels of solicitous responses from significant others. Changes in depression from one to twelve months were explained by catastrophising, but unlike the findings of Jensen et al. (2002) catastrophising did not explain changes in interference. Analyses at 24 months following the amputation reflected similar findings, the main difference being that catastrophising at one month made a significant independent contribution to the prediction of change in pain interference at 24 months. These results can be compared with those of Whyte and Carroll (2004) who found that, after controlling for pain intensity and duration, catastrophising accounted for 6% of the variance in the scores on the physical scale and 12.5% of the variance in the scores on the psychosocial scale of the Sickness Impact Profile (SIP) (Bergner et al., 1981). Catastrophising is also thought to play a role in the experience of post herpetic neuralgia (PHN). Although reporting lower levels of catastrophising than a group of people with limb amputations, it was a significant predictor of pain in this population eight weeks later (Haythornthwaite et al., 2003). Interference due to pain at eight weeks was predicted by baseline interference and increasing activity as coping strategy used in response to pain. Depressed mood was predicted by baseline depressed mood, interference, overall activity level and ignoring pain sensations. Although not predictive, similar associations were found in a population of people with HIV-related peripheral neuropathic pain (Evans et al., 2003b). Rather than pain intensity and interference with functioning being associated with measures of physical health, they significantly correlated with symptoms of depression, anxiety, somatization, overall distress, catastrophising and negative thought content. Unhelpful cognitions are instrumental factors in the adjustment of chronic pain (Stroud et al., 2000). Negative self-statements, such as “I am useless” are thought to be associated with low self efficacy and catastrophising and have a detrimental effect on the experience of chronic pain (Haythornthwaite et al., 2001; Jensen et al., 2001; Turner et al., 2002). This relationship is thought to exist in neuropathic pain. Evans et al. (2003b) used the Inventory of Negative Thoughts in Response to Pain (INTRP) to assess negative self-statements, negative social cognitions and self-blame in people with HIV-related peripheral neuropathic pain. They found that negative self statements and negative social cognitions (but not self blame) were associated with pain intensity. All the subscales of the INTRP were significantly associated with pain interference and distress. Thirty five per cent of pain interference could be accounted for by negative cognitions (after controlling for age, education, pain frequency and viral load), with self blame making a significantly independent contribution. In addition, negative cognitions account for 44 per cent of the variance of distress (with negative self-statements making a significant independent contribution) and 43 per cent of the variance for symptoms (with negative social cognitions making a significant independent contribution). The above studies illustrate the interaction between the biological, psychological and social components of the experience of neuropathic pain. Although differing in predictive values across sub-groups of neuropathic pain, psychosocial variables, particularly catastrophising, contribute to the variance of pain intensity, pain interference and depressed mood. A correlation between unhelpful cognitions and pain intensity, pain interference and distress in people with HIV-related peripheral neuropathic pain is also indicated.

Cognitive Processing: Catastrophising Erroneous beliefs are not challenged & re-evaluated INJURY/STRAIN DISUSE DISABILITY DEPRESSION RECOVERY AVOIDANCE EXPOSURE PAIN EXPERIENCE FEAR OF MOVEMENT (RE)INJURY, PAIN LOW FEAR CATASTROPHIZE Vlaeyen & Linton (2000)

Cognitive Processing: Worry Eccleston & Crombez, 2007 We worry when we perceive that a situation could have a negative outcome Worry is an attempt to find a solution to a problem It can help solve problems...but only if the problem is soluble Worry & problem solving with pain can be misdirected Where pain is seen as the whole problem…. Where the problem is seen as disability & distress due to pain…. Attempts to solve the problem are focused on pain reduction…. Attempts to solve the problem are focused on reducing disability & distress…. There are some answers Often no solution

Cognitive processing: Mood related biases Anxiety: Selective for threatening information Depression: Selective for negative information I can’t understand scans, and the doctor told me it was fine I remember that time when my pain was awful & I didn’t cope well My scan looked awful I have coped many times with increased pain The doctor said that my pain might move around a bit, that’s normal I’m sure that headache is linked to my face pain…it’s just all getting worse My pain has spread I used to have headaches every one or two weeks before my face pain

Cognitive and emotional influences on pain processing & responses to pain hcps

HCPs Worry Depression Beliefs & meanings Anxiety Catastrophising

HCPs are powerful co-creators of beliefs about pain (helpful and unhelpful) Eccelston et al, 2013 We have the strongest influence upon patients attitudes & beliefs about the cause, meaning of symptoms & expectations of prognosis Simmonds et al, 2012; Darlow et al., 2013 We can helpfully alter patients’ beliefs about the cause, meaning and consequence of pain

Self reflection: what do we come into the room with? CONSIDERATIONS Self reflection: what do we come into the room with?

Cognitions & cognitive processing Behaviour Emotions Body Situation Cognitions & cognitive processing Behaviour Emotions Body Situation

Our model of pain and desire to treat & cure CONSIDERATIONS Our model of pain and desire to treat & cure

Stop the vicious cycle of referrals & distress Search for a cure Hope ‘Failed’ treatment Distress Psychological & physical impact Well meaning medical interventions can reinforce searches for a cause & cure The ability to say enough is enough is difficult but can be extremely helpful & stop damaging cycles

The Language & words we use CONSIDERATIONS The Language & words we use

We often believe that patients want confident certainty & reassurance from us. But this may not help HCPs using ‘certainty language’ More likely to prematurely close their assessment of pain and less likely to assess thoroughly (Shields et al, 2013) Can increase patient anxiety (Linton et al, 2008)

…Perceptions of what we say S/he saying the pain is in my mind “You’re scans are normal” The nerve is broken in two. I can find someone to attach it back together “Your pain is caused by nerve damage” My nerve is sending faulty messages “Wear and tear” Things will get more worn & torn. My jaw & pain are going to get worse & worse…. My jaw is weak & crumbling…and will fall off “Your jaw is a bit crumbly”

Finding out what the patient thinks & believes CONSIDERATIONS Finding out what the patient thinks & believes

“Listening, without judgment, to patients’ beliefs about the cause of pain, which can seem outlandish, gives valuable insight into what is causing distress and halting progress” (Eccleston et al, 2013)

Do we listen…..? 77% of patients are interrupted after 12 seconds (Dyche, 2005) 69% of patients are interrupted and directed toward a specific concern (Beckman & Frankel, 1984) 37% of patients are not asked about their agenda for the appointment 70% of patients want to ask more questions (Salmon, 2000) Female patients are interrupted more often than male patients (Rhaodes, 2001) Male HCPs interrupt more frequently than female HCPs (Rhaodes, 2001)

The loss of relevant information This results in: The loss of relevant information 24% reduction in HCP understanding of the patient  Myths “Patients will go on and on and on…..” On average, uninterrupted patients stop in less than 30 secs in 1o care and 90 secs in 2o care “We haven’t got time & they’re so complex” Assessment of time pressure or medical complexity were not associated with rates of interruption Beckman & Frankel (1984); Rhoades et al (2001); Dyche & Swiderski (2005); Salmon, (2006)

Stay curious & open What do you think is happening when your pain increases? We’ve talked about what is causing your (symptoms). What are your thoughts about them now ? What do you think is causing your pain? This may sound an odd question, but what’s the worst thing for you about having this condition? Many people have concerns or worries when they have this condition, what are yours?

Patient understanding CONSIDERATIONS Patient understanding

Systematic search of PubMed (1961-2006) Am J Surg. 2009 Sep;198(3):420-35 Surgery Adequate overall understanding of the information provided 6/21 (29%) Risks associated with surgery 5/14 (36%) Satisfaction by the amount of the given information 7/12 (58%) Clinical research The aim of the study 14/26 (54%) The process of randomization 4/8 (50%) Voluntarism 7/15 (47%) Withdrawal 7/16 (44%) The risks of treatment 8/16 (50%) The benefits of treatment 4/7 (57%) 12/15 (80%)

Aid understanding The average reading age of the UK population is… 9 years Use plain, non-medical language Use pictures (show or draw) Collaborative Visual images can improve recall Limit the amount of information provided Information is best remembered when given in small pieces Check understanding But not with “Do you understand what I’ve said?”

Cognitive behavioural pain management The intervention Cognitive behavioural pain management Clare

CBT pain management (MDT) Aims Increase the patient’s understanding of persistent pain Pain processing Pain does not equal damage Reduce disability Reduce pain related distress Improve sleep Achieve greater independence in health care

‘About Face’ Pain Management Programme TMD, trigeminal neuropathic pain, persistent idiopathic facial pain 2 hour Information Session (n~20) 50 min psychology assessment (1:1) Six 3.5 hour weekly sessions (n=12) 1 and 9 month FUs

Trigeminal Neuralgia Programme Fear of the next attack “What if…………” Avoidance 2 hour Information Session (n~14) 50 min psychology assessment (1:1) Six 3.5 hour weekly sessions (n=12) 1 and 9 month FUs Framework of mindfulness based cognitive therapy

Burning Mouth Syndrome “What is it?” “What medical treatments will help?” “Will it go?” 2 hour Information Session (n~14). Medical education about BMS and medication 50 min psychology assessment (1:1) Short group intervention (workshop format)

About Face clinical outcomes Measures Pre - Post Pre- One Month FU N Mean diff (SD) 95% CI d Pain intensity (BPI) 30 0.58(5.37) -1.42-2.59 0.22 21 2.43(5.18) 0.07-4.78 0.94 Pain Self Efficacy Scale (PSEQ) 39 -4.92(8.52) -7.68-2.15 1.14* 26 -2.82(7.05) -5.67-0.02 0.81 Depression (DAPOS) 49 1.69(3.23) 0.76-2.62 1* 32 1.53(3.21) 0.37-2.69 0.96 Anxiety (DAPOS) 1.54(2.57) 0.80-2.28 1.66(2.22) 0.85-2.46 1.29* Pain Catastrophsing Scale (PCS) 46 7.99(8.95) 5.36-10.62 1.04* 33 7.09(7.77) 4.39-9.81 1.26* Pain Interference (BPI: Face) 29 0.61(1.35) 0.09-1.12 0.91 17 0.17(1.16) -0.43-0.77 0.31 Illness Perceptions Questionnaire (IPQ) 34 7.12(7.51) 4.49-9.73 1.24* 19 7.53(6.91) 4.19-10.86 1.82* Clare * = p<0.007 following Bonferroni Correction

Summary Psychological processes are a normal part of facial pain processing In order to develop a non-pathological formulation of the patient we need to understand the patient’s Understanding of pain Responses to pain Beliefs about what is needed to help them Attend to our communication with the patient Evidence based psychological pain management is effective in reducing the psychological and physical impact of persistent orofacial pain Thank you