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THE PATIENT WITH MEDICALLY UNEXPLAINED SYMPTOMS Prof. Trudie Chalder Dr. Rina Dutta Different terms for medically unexplained symptoms • Medically unexplained symptoms (MUS) / Medically unexplained physical symptoms (MUPS) (symptoms not explained by the medical model) • Functional (e.g. “functional dyspepsia”; affecting physiological or psychological functions but not due to structural / physical / chemical disorder) • Idiopathic (e.g. idiopathic chest pain – means ‘unknown cause’) • Somatisation (usually implies physical symptoms are expression of emotional distress) • DSM-IV somatoform disorders (criticised for containing mixture of relatively specific categories such as somatisation disorder and hypochondriasis, and vague non-specific categories such as undifferentiated somatoform disorder) • Miscellaneous specific terms (e.g. irritable bowel syndrome (IBS), chronic fatigue syndrome (CFS) Which clinics see patients with MUS? Gastroenterology: Rheumatology: Infectious diseases: Neurology: Hand surgery: Dental: Cardiology: Gynaecology: Urology: Irritable bowel syndrome Fibromyalgia Chronic fatigue syndrome Headache/Non-epileptic seizures Repetitive strain injury Atypical facial pain Non-cardiac chest pain Chronic pelvic pain Irritable bladder syndrome What is the prevalence of MUS in medical clinics (Nimnuan et al., 2001) Clinic Prevalence (95% CI) Chest 59% (46-72) Cardiology 56% (46-67) Gastroenterology 60% (45-73) Rheumatology 58% (47-69) Neurology 55% (45-65) Dental 49% (37-61) Gynaecology 57% (50-68) Total 56% (52-60) What is Chronic Fatigue Syndrome: Oxford Criteria (Sharpe et al., 1991) • Fatigue is the principal symptom. Fatigue is severe, disabling, and affects physical & mental functioning • Definite onset that is not lifelong • Fatigue has been present for a minimum of 6 months, during which time it has been present for more than 50% of the time • Other symptoms may be present, particularly myalgia, mood, and sleep disturbance • Exclusion criteria include presence of medical conditions that produce chronic fatigue & certain psychiatric disorders (substance abuse, eating disorders, organic brain disease) Chronic Fatigue Syndrome (“ME”) • More common in women than men • Prevalence estimates vary widely. o Can be difficult to differentiate CFS from depressive & anxiety disorders. Estimates that do not exclude those diagnoses are much higher than those that do. o Depends on criteria used. o Prevalence in adults perhaps 0.3-1.0%. • 50%+ have psychiatric disorders, especially depression Diagnosis • IBS is a clinical diagnosis • A symptom complex for which no organic cause has been found • No physical test by which to identify the syndrome • Identified by symptoms • Usually ESR and full blood count exclude other diagnoses Irritable bowel syndrome: Rome II criteria • At least 12 weeks (not necessarily consecutive), in the preceding 12 months of abdominal discomfort or pain that has 2 out of 3 features: 1) Relieved with defecation; and/or 2) Onset associated with a change in frequency of stool; and/or 3) Onset associated with a change in form (appearance) of stool. Other symptoms that are not essential but support the diagnosis of IBS: • Abnormal stool frequency (greater than 3 bowel movements/day or less than 3 bowel movements/week); • Abnormal stool form (lumpy/hard or loose/watery stool); • • Abnormal stool passage (straining, urgency, or feeling of incomplete evacuation); Passage of mucus; • Bloating or feeling of abdominal distension. Irritable Bowel Syndrome (IBS) • Symptoms that might indicate another disorder and hence further investigation necessary include; rectal bleeding, unintended weight loss, frequent awakening by symptoms, fever, anaemia. • Very common, 9-12% of population (up to 30% have some features), small minority get disability • More common in women than men • In gastroenterology clinics about 40-60% have psychiatric disorders, mainly anxiety & depression Evidence from RCTs: CFS • CBT generally found to be significantly better than standard medical care / group psychoeducation / pacing (e.g. Sharpe et al., 1996; Deale et al., 1997; Prins et al., 2001; White et al 2011) • Graded exercise therapy (e.g. Fulcher & White, 1997; Powell et al., 2001; White et al 2011) Treatments with little or no supportive evidence include: - Antidepressants; Nutritional supplements - Extended rest; Complementary / alternative therapies Evidence from RCTs: IBS • CBT: - More effective than control conditions (Greene & Blanchard, 1994; Dulmen et al. 1996) [although Boyce et al. (2003) found no diffs between CBT & relaxation training & routine medical care] - Group CBT is superior to psycho-education or usual medical care (Toner et al., 1998) - CBT in combination with antispasmodic drugs is superior to drugs alone (Kennedy et al., 2005). More evidence from RCTs: IBS •Hypnotherapy (e.g. Whorwell et al., 1984) and psychodynamic interpersonal therapy (Guthrie et al., 1993; Creed et al. 2003) effective in reducing symptoms / ↑ quality of life in secondary care. • Antidepressants – most effective drugs for treating IBS; modify gut motility and alter visceral nerve responses, reduce pain. •Antispasmodics (e.g. mebeverine hydochloride) are associated with improvement in symptoms for some people. Engagement • Be empathic • Explicitly convey belief in reality of physical symptoms; doesn’t mean ‘all in the mind’ • Shift focus from “cause” to “symptom management” • Avoid physical versus psychological discussions • Use physical illness analogies to illustrate approach • Reinforce any helpful responses patient is already using • Elicit concerns and expectations Presenting CBT approach Assumes multiple contributory factors • Predisposing factors • Precipitating events or triggers • Maintaining factors (Physiological, behavioural, cognitive, emotional, social) Use information from assessment to develop individualised model of the different contributory factors Modifying predisposing & maintaining factors can help to: - reduce symptoms and impairment - decrease risk of future relapse CBT for unexplained symptoms: Basic components • Guided by individual conceptualisation • Rationale for every aspect of treatment • Expanding understanding of contributory factors • Physiological explanations where possible • Begin with behaviour change • Cognitive work on unhelpful thinking patterns & underlying beliefs • Normalising and acceptance of symptoms • Pain does not necessarily mean damage / harm • Work on other psychological issues if necessary (e.g. low self-esteem, lack of assertiveness). • Be aware how underlying beliefs may affect therapy • Recovery defined in terms of concrete behaviour, not necessarily symptom free or returning to previous lifestyle • Relapse prevention Other aspects of treatment • Close liaison with all practitioners (party line) • Deal with reassurance seeking (provide rationale / liaise with those providing reassurance) • Suspend further investigations or agreeing a compromise • Rationalise medication • Reduce drugs with adverse side effects Components specific to fatigue • Establishment of consistent baseline activity level - Use activity diaries at beginning of treatment • Balance between activity and rest • Identify activity targets (exercise, social, work-related, leisure) •Break down targets into specific manageable steps •Increase activity level if managed at least 75% of time over past fortnight •Don’t increase exercise time more than about 10% at a time •Address high action proneness Sleep Management Programme • • • • • Sleep diaries for assessment Set getting-up time No sleeping in the day-time Stay in bed only for amount of time sleep for (e.g. if patient usually sleeps 8 hours in total, don’t go to bed at 10pm & get up at 8am) • If sleeping excessively, gradually reduce • Sleep hygiene - Check caffeine, use bedroom for sleep only, wind down before bedtime, make sleep environment comfortable etc. • Address unhelpful beliefs about sleep Example of initial activity programme for underactive person with CFS Someone who is resting for 6 hours a day: • Get up at 8 a.m. • Housework for 15 mins twice a day • Paperwork or other chores for 15 mins twice a day • Read for ten minutes a day • Email for ten minutes a day • Two 10-minute walks each day • Rest for six 1-hour periods, spaced through day • Talk to friends on phone for 10 mins, every other day Presenting the model with a Case Study • Sally: 30-year old woman with a 3-year history of severe fatigue, concentration / memory difficulties, muscle and joint pain. • Believes that a virus was the cause of her problems as has never been well since she had a bout of gastroenteritis three years ago. At that time there were also stresses at work and her relationship with her partner was breaking down. • Unable to walk for more than about ten minutes without becoming extremely fatigued and experiencing more muscle pain. • Reduced from full-time to part-time work because of her symptoms. • Goes to bed at 9pm and gets up at 7.30am. Often has trouble getting to sleep or staying asleep. Quite often sleeps in the daytime. • Limited social life - it is fatiguing to be with people or staying out late. • Lives with her mother who does most of the housework and shopping. • Believes that her mood has become low because her quality of life has decreased. Is sure that depression is not the cause of her problems and is fed up with doctors assuming that she is simply depressed. • Reluctant to see a psychologist but is offered no alternatives. DISCUSSION Components specific to IBS • Familiarise self with anatomy & functioning of the digestive system • Education about bowel functioning to challenge misconceptions such as: • “I should have a bowel movement every day” • Everyone’s bowel habits are different; normal bowel movements may occur as often as three times a day to as few as three a week. • IBS is a problem with how the digestive system functions but is not a disease Brain-gut connection • Bowel is a segmented tube • Food is propelled down by the sequential squeezing of each segment. • Nerves from the brain control this motion. • If the nervous control is disrupted, problems with this movement can result. • Stress and other psychological factors cause bowel symptoms by affecting this nervous control. Stress and intestinal functioning • Effects that stress can have (general population): - Spasms in muscles in gut wall, resulting in pockets of high pressure, gas or painful contractions - Decreased gastric emptying and accelerated colonic transit. • Results in symptoms such as cramps, diarrhoea etc. • These gut responses to stress are enhanced in IBS patients. • IBS patients report greater pain response to distension of the bowel (e.g. in experiments with inflatable balloon) • Any intervention that helps the person to manage stress more effectively is likely to help Components specific to IBS (con) • Avoiding foods can: - result in increased sensitivity & - make it more difficult to get nutritionally balanced diet • Re-introduce avoided foods • Address other safety-seeking behaviours around bowel functioning (e.g. not eating for long periods of time before an important event) assess carefully, there may be many! PATIENTS LOG BOOK Monday Tuesday Wednesday Thursday Friday Saturday Establish healthy bowel routine • Healthy, varied diet (not too much of one food) • Eat regularly; chew food slowly and thoroughly • Drink 6-8 cups of water daily • Maintain a regular program of physical exercise and activity • Avoid delaying the urge to have a bowel movement • Avoid straining / forcing • Dealing with pain (e.g. accepting, not trying to suppress or focussing on pain excessively) Behavioural experiments – examples of beliefs to target • Beliefs about needing to avoid particular foods, places to eat • Beliefs about needing to avoid particular activities that use up energy or result in increase in symptoms • Perfectionism Stepped Care • Self help materials • IAPT • Primary care • Specialist care – CBT Key Assessment Tools Questionnaires for use in CFS: examples • Chalder Fatigue Scale (Chalder et al., 1993) • Work and Social Adjustment Scale (Mundt et al., 2002) • Beliefs about emotions scale (Rimes & Chalder 2009) • SF-36; Physical functioning subscale (Ware & Sherbourne, 1992). • Measures of anxiety & depression e.g. Hospital Anxiety & Depression Scale (Zigmond & Snaith, 1983) Questionnaires for use in IBS: examples • IBS Symptom Severity Scale (Francis et al., 1997) • Behavioural Scale for IBS (Reme et al 2010) • Work and Social Adjustment Scale (Mundt et al., 2002) • Measures of anxiety and depression (HAD) The CBT model of MUS Deary V, Chalder T & Sharpe M. (2007) One of the Resources for Self-Study on Moodle Key Points • Assessment • Treatment • Evidence • Where to refer It’s good to talk CBT style of course!