Psychology orofacial pain Dr H Clare Daniel Consultant

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

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 paindysfunction”. 2013 • “Burning mouth syndrome is a psychosomatic condition” 2014

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

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

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; social communication EMOTIONAL INPUT Anxiety; depression; fear Melzack (1999): The Neuromatrix Model STRESS Cortisol, noradrenaline, cytokine levels; immune system activity, endorphin levels

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

Cognitive and emotional influences on pain processing & responses to pain THE PATIENT

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

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

Beliefs Causal beliefs “My pain must be caused by cancer” Beliefs about symptoms “Clicking means that my jaw bone needs surgery” “My skull is balanced on my spine” Anatomical beliefs “My jaw is lose” 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 • In healthy subjects: predicts pain intensity & tolerance • At acute stage: predicts chronicity & disability • In chronic pain: predicts mood & avoidance • Associated with greater sleep disturbance in TMD. Catastrophising was mediated by sleep disturbance to increase pain severity & painrelated interference – (Buenaver et al, 2012) • Associated with the progression of chronic TMD pain & disability – (Velly et al, 2010)

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

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…. Often no solution There are some answers

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 The doctor said that my pain might move around a bit, that’s normal My pain has spread I have coped many times with increased pain I’m sure that headache is linked to my face pain…it’s just all getting worse 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 16

Worry Depression Catastrophising HCPs Anxiety Beliefs & meanings

• 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

CONSIDERATIONS SELF REFLECTION: WHAT DO WE COME INTO THE ROOM WITH?

Situation Cognitions & cognitive processing Body Behaviour Emotions

CONSIDERATIONS OUR MODEL OF PAIN AND DESIRE TO TREAT & CURE

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

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

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)

• This results in: – The loss of relevant information – 24% reduction in HCP understanding of the patient • Myths – “Patients will go on and on…. . ” • On average, uninterrupted patients stop in less than 30 secs in 1 o care and 90 secs in 2 o 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? Many people have concerns or worries when they have this condition, what are yours? This may sound an odd question, but what’s the worst thing for you about having this condition?

CONSIDERATIONS PATIENT UNDERSTANDING

Systematic search of Pub. Med (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%) Satisfaction by the amount of the given information 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? ”

The intervention COGNITIVE BEHAVIOURAL PAIN MANAGEMENT

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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 2 hour Information Session (n~14) “What if…………” 50 min psychology assessment (1: 1) Avoidance Six 3. 5 hour weekly sessions (n=12) Framework of mindfulness based cognitive therapy 1 and 9 month FUs

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

About Face clinical outcomes Pre - Post Measures N Mean diff (SD) Pre- One Month FU 95% CI d 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) 49 1. 54(2. 57) 0. 80 -2. 28 1* 32 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* * = p<0. 007 following Bonferroni Correction

Summary • Psychological processes are a normal part of facial pain processing u o y k n a h T • 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