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Perceptions of
Chronic ill Health
Prof. Craig A. Jackson
Head of Psychology
Birmingham City University
Patient Pathways
start
Ill-Health
Present to A&E
Present to GP
end
Advise
end
Investigation
end
Treatment
end
Management
Treatment
Time between start #1 and end #1 ?
Time between end #1 and start #2 ?
Symptoms ?
Detection of Chronic Patients
Vital due to increased risk of iatrogenic harm
Potential chronic patients could be identified by:
1. Size of paper records
2. Attendance records
Frequency
Regularity
Concordance
3. Hospital referral rates
4. Observation by staff
Medical
Nursing
Clerical staff – pattern spotting software
Non-Specific Symptoms
Often missed in assessment
Prevalence of Non-Specific Symptoms
Symptom
Prevalence %
Stuffy nose
46.2
Headaches
Tiredness
Cough
Itchy eyes
Sore throat
Skin rash
Wheezing
Respiratory
Nausea
Diarrhoea
Vomiting
33.0
29.8
25.9
24.7
22.4
12.0
10.1
10.0
9.0
5.7
4.0
Heyworth & McCaul, 2001
Modern day complaints
Multiple Chemical Sensitivity
Chronic Fatigue Syndrome
Sick Building Syndrome
Gulf War Syndrome
Low-level Chemical Exposure
Electrical Sensitivity
Stress-related ill-health
Historical complaints
Railway Spine
Neurasthenia
Combat Syndrome
Case Summary of a Chronic Patient #1
Date
Symptoms
Referral
Investigation
Outcome
1980 (18)
Abdominal pain
GP --> surgical OP
Appendicectomy
Normal
1983 (21)
Pregnancy
(boyfriend in prison)
GP --> obs and gynae
OP
1985-7
(23-25)
Bloating, abdominal
blackouts (divorce)
GP --> Gastro and
neurology OP
1989 (27)
Pelvic pain
(wants sterilisation)
GP --> obs and gynae Sterilised
OP
Pain persists for 2 years
1991 (29)
Fatigue
GP --> infectious
diseases unit
Diagnosis of ME by patient
and self help group
1993 (31)
Aching muscles
GP --> rheumatology Mild cervical
clinic
spondylosis
1995 (34)
Chest pain, breathless A&E --> chest clinic
(child truanting)
Termination
All tests normal
Nothing abnormal
IBS diagnosis
unexplained syncope
Pain clinic - Tryptizol
Nothing abnormal
Refer to psychiatric services
poss hyperventilation
Common Chronic Ill-Health Complaints
• Low Back Pain
• Carpal Tunnel Syndrome
• Cumulative Trauma Disorders
• Tendonytis
• Repetitive Strain Injury
• Fibromyalgia
• Irritable Bowel Syndrome
• Chronic Fatigue
FORMS OF
CHRONIC PAIN
& FATIGUE
Those with heightened symptoms choose attributions to match concepts of
what is currently acceptable in medicine
External cause for illness preferred - patient becomes a helpless victim
Chronic Patient’s Attributions of Ill-Health
• Work
• Environment
Chemicals
Stress
Toxins
Virus
Allergies
• Traumatic injury
• Anatomy / Ergonomic
Common Misconceptions about Health
“I like
money”
“I like
money too”
“Exploit someone new today”
21st Century Satanic Mills
Somatization and Fashionable Diagnoses
Somatoform Disorders (DSM III category) “Somatization disorder”
Psychiatric diagnosis
Somatization
1. Rationalisation for psychosocial problems
2. Coping mechanism
3. Becomes a way of life
Fibromyalgia
Dysautonomia
Irritable Bowel Syndrome
1.
2.
3.
4.
Multiple Chemical Sensitivity
Reactive Hypoglycemia
Chronic Fatigue Syndrome
Vague subjective multisystem complaints
Lack of objective lab findings e.g no organic cause
Semi-scientific explanations e.g “post-viral syndrome”
Symptoms consistent with Depression, Anxiety or general unhappiness
Somatization and Fashionable Diagnoses
Linking Emotions with Physical Symptoms
• Patients with physical symptoms arising from psychological distress
• Some may not have made the link themselves
“Anxiety causes muscle tension. Muscle tension causes headaches”
• Don’t rush patient to understand
Start from their perspective
What do they think is causing physical problems (clues)
• Broaden agenda to where problems can be physical and psychological
Linking Emotions with Physical Symptoms
Which causes which?
Modern-Day Patients
• Patients more involved in their own care than even before
• The term “consultation” is disappearing
• Mistrust of Medicine e.g. Shipman, Allit, Meadows cases
• Less Mysterious and Powerful
Change in what is expected from practitioners…
…Has changed how practitioners view patients
Emphasis on
(1) risk reduction
(2) public health
(3) preventative behaviour
“Do you know about statistics?”
• Some (older patients) still prefer to be told what the treatment will be
• Skill is in achieving the correct balance for each patient
Terminology of Chronic Patients
Invokes many emotions in practitioners: despair
frustration
anger
“Heartsinkers”
“Difficult”
“Fat folders”
“Chronic complainers”
“G.O.M.E.R”
Inadvisable terms
Lose faith
Offensive
Complaints
“Chronic Multi-Form Somatic Symptoms”
Irritable Bowel Syndrome
Common digestive disorder
Functional syndrome
Traumatic life events, Personality
disorders, Stress, Anxiety, Depression
Somatization
Not a psychological disorder
Night-workers & Loners
Psychology important in how symptoms are perceived and reacted to
Can poor QoL Become a predictor of who will suffer in advance?
Chronic Fatigue Syndrome
• Non-specific subjective symptom
• Overlap with psychiatric diagnoses (66%)
• Chronic long-term inability and tiredness
• Both Physical and Psychological fatigue
• Most prevalent in white, middle class thirtysomething females
• Fatigue dominates activities and life
The benefits of support groups?
The benefits of support groups?
Malingering
Malingering
0 to 10% of consultations according to
practice / specialty
Secondary gain is external
Custom and practice in some workplaces
Entitlement
4 criteria – (i) intentional, (ii) false, exaggerated or misattributed complaints,
(iii) volitional, (iv) non-trivial consequences
Malingering
desire to outwit those in authority
successful malingerers are likely to repeat behaviour
illnesses that rely on subjective symptoms for diagnosis are easiest to
simulate
doctors are not trained or prepared for patient deception
doctors and lawyers may collude either actively or passively against a third
party
Factitious Disorders (DSM-IV)
Dramatic but inconsistent medical history
Unclear symptoms that are not controllable and that become more severe or
change once treatment has begun
Predictable relapses following improvement in the condition
Extensive knowledge of hospitals and/or medical terminology, as well the
textbook descriptions of illness
Presence of many surgical scars
Factitious Disorders (DSM-IV)
Appearance of new or additional symptoms
following negative test results
Presence of symptoms only when the patient
is alone or not being observed
Willingness or eagerness to have medical tests,
operations, or other procedures
History of seeking treatment at many hospitals, clinics, and doctors offices,
possibly even in different cities
Reluctance by the patient to allow health care professionals to meet with or
talk to family members, friends, and prior health care providers
Compensation Neurosis
Pending litigation
Treatment results often poor
Some overt malingering
Exaggerated illness due to:
suggestion
+
somatization
rationalization +
distorted sense of justice
victim status
+
entitlement
Adverse legal / admin. systems
Harden patient’s convictions
With time, care-eliciting behaviour may remain permanent
Bellamy, 1997
Compensation Neurosis
Improvement in health.....
...may result in loss of status
Patient compelled to guard against getting better
Financial reward for illness is a powerful nocebo
Exacerbates illness
In a litigious society, will compensation neurosis become more widespread?
Accident Neurosis
• Failure to improve with treatment until compensation issue settled
• Accident must occur in circumstances with potential for compensation
payment
• Inverse relationship to severity of injury - Accident neurosis rare in cases of
severe injury
• Low socio-economic status favors accident neurosis
• Complete recovery common following settlement of compensation issue ? ?
Miller, 1961
Abnormal Illness Behaviour after Compensable Injury
Accident neurosis
Aftermath neurosis
Attitudinal pathosis
Compensatory hysteria
Compensation neurosis
Functional overlay
Greenback neurosis
Justice neurosis
Post accident anxiety syndrome
Postaccident fibromyalgia
Profit neurosis
Railway spine
Traumatic hysteria
Traumatic neurasthenia
Triggered neurosis
Vertebral neurosis
Whiplash neurosis
Accident victim syndrome
American disease
Barristogenic illness
Compensationitis
Fright neurosis
Greek disease
Invalid syndrome
Perceptual augmenter
Pensionitis
Post-traumatic syndrome
Psychogenic invalidism
Secondary gain neurosis
Symptom magnification syndrome
Traumatic neurosis
Unconscious malingering
Wharfie’s back
Mendelson, 1984
Secondary Gain Pre-disposition
What is the Motivation?
• Desire for attention
• Punish spouse / others
• Solve life’s problems
• Cry for help
• Diversion from work
• Socially approved task avoidance
sex with spouse
work
military duty
Secondary Gain Pre-disposition
Non-economic motivation?
• Loneliness
• Difficulty expressing emotional pain
• Depression
• Anxiety
• History of attention seeking when ill
Secondary Gain Pre-disposition
Who are the Potential Claimants?
• Military patients nearing severance
• Workers under retirement age
• Low job satisfaction
• Workers soon to be made redundant
• Members of support groups
Abnormal Illness Behaviour (Care Eliciting Behaviour)
• Disability disproportionate to detectable illness
• Constant search for disease validation
• Relentless pursuit of “enlightened doctors”
• Appeals to doctor’s responsibility
• Attitude of personal vulnerability and entitlement to care by others
• Avoidance of health roles due to lack of skills and fear of failure
• Adoption of sick role due to rewards from family, friends, physicians
• Behaviours which sustain the sick role - complaints, demands, threats
Blackwell, 1987
Return to Work
10 20 30 40 50 60 70 80 90 100
% returning to work
Longer off work = Less likely to return to work
<1 2 4 6 8 10 12 14 16 18 20 22 24
months not working
Waddell, 1994
Psychological Consequences of Chronic Illness
Back Pain
• Distress
Money worries - Disablement
• Reduced Quality of Life
• Delay in seeking help
Fear
Denial
• Depressed / Anxious
• Increased somatic complaints
Pain
Fatigue
Breathlessness
Begins bad habit of seeking help too readily
Adjustment Disorder – commonest psychiatric diagnosis
Increased risk of suicide in early stages (of some conditions)
Behavioural Yellow Flags of Chronic Ill-Health
Indicative of long term chronicity and disability
Back Pain
•
Negative attitude – back pain is harmful and disabling
•
Fear avoidance – stops trying things – disability mindset
•
Reduced activity
•
Expects passive treatment to be better than active treatment
•
Tendency to low morale, depression and social withdrawal
•
Social / Financial problems
Somatization & Sick Role
The process by which psychological needs are expressed in physical
symptoms: e.g., the expression or conversion into physical symptoms of
anxiety, or a wish for material gain associated with a legal action.
1. Auxiliary social support
2. Rationalisation for failure
3. Gratification of nurturance
4. Manipulate interpersonal relations
5. Articulate distress: cry for help
6. Misinterpretation of anxiety / depression symptoms
7. Over-vigilance for significant symptoms
8. Avoids stigma with a physical cause
9. Over-attention reflects learned behaviour
10. Amplification and Negative Affectivity
11. Primary, Secondary and Tertiary gains
12. Unexplained physical symptoms in trauma victims (e.g. abuse)
Conclusion
• Somatization influenced by numerous factors
• Sick role resolves intrapsychic, interpersonal or social problems
• Fashionable diagnoses have considerable overlap
• Occupational and Environmental syndromes
• Non specific and subjective complaints
• Underlying depression, anxiety, and history of unexplained complaints
• Mass communication + support groups = fashionable way to solve distress
• Behavioural aspects of chronic patients – blame, refusal, over-reporting etc.