pain in people with developmental disabilities · autism spectrum disorders - sensitivity to...
TRANSCRIPT
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Dr. Eileen Trigoboff and
Dr. Daniel Trigoboff
Pain in People With Developmental
Disabilities
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Assessment of Pain
Module 2
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■ Pain Scale Options ■ Proxy Reports ■ Verbal & Vocal Indicators of Pain ■ Under-Treatment of Pain Symptoms with Non-Verbal and
Non-Vocal People with DD ■ Behavioral & Physiological Indicators of Pain ■ Syndrome-Specific Indicators of Pain Symptoms ■ Co-Existing DD & Psychiatric Symptoms and Pain ■ Staff Assessment Strategies ■ Resilience ■ Documentation of Pain Assessment
Outline - Module 2
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FLACC
■ Face
■ Legs
■ Activity
■ Cry
■ Consolability
Pain Scale Options
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■ Non-Communicating Adult Pain Checklist (NCAP)
6 categories
18 items
■ Pain Behavior Scale
Pain Scale Options
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■ PainDETECT questionnaire (PD-Q)
■ The Leeds Assessment of Neuropathic Symptoms and Signs (LANSS)
■ A pain visual analog scale
Pain Scale Options
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VAS
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If you cannot use an objective test or a scale, your remaining options are the following:
■ Your clinical skills
■ Your knowledge of your recipient
■ Compare recipient to earlier behavior and function
What If a Pain Scale
Cannot Be Used?
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■ Complete pain assessment
■ Use a pain intensity scale to monitor pain
Measures for Assessment
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Pain assessment components
■ Location
■ Intensity
■ Timing
■ What makes it worse
■ What makes it better
■ Response to treatments
Measures for Assessment
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*Estimate pain intensity on a scale of 1 to 10 with 1 being mild and 10 being very severe. Adapted from U. S. Department of Health & Human Services: Agency for Health Care Policy and Research, 1994.
Date Time Pain
Intensity*
Non-Med
Treatment
Medicine
Taken
What I was
doing when
pain began
Pain
intensity
1 hour after
Keep a record of experiences with pain, treatment for pain, and
medications. Share this information to help manage pain most
effectively.
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How to use information from others to formulate your assessment of a recipient’s pain
■ Level
■ Location
■ Severity
Proxy Reports
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Incorporate others’ information based on their descriptions of the following:
■ Evidence of pain
What they see
How they interpret what they see
■ Impact on function
■ Impact on quality of life
Proxy Reports
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■ Language
■ Body Map
■ Visual Analogue Color Scale to Rate Pain Intensity
■ Responses to Photographs of Simulated Pain Experiences
Verbal Indicators of Pain
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Pain Scale
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■ Utterances
■ Moans/groans
■ Screams
■ Non-word sounds
Vocal Indicators of Pain
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People who have any type of DD, especially those who are non-verbal and non-vocal, who have pain are typically undertreated for that symptom.
Under-Treatment of Pain Symptoms
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Non-Verbal and Non-Vocal People with DD who are in pain need special assessments
■ Sensitivity to the cues given
■ Interpret those cues effectively
■ Respond to the cues
■ Evaluate whether your response improved the pain symptom
Under-Treatment of Pain Symptoms
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Consider how these aspects affect staff reactions to pain:
■ Is it OK to have pain?
■ How should people behave when they have pain?
■ How much expression of pain is allowed?
■ How long is it OK to express being in pain?
Staff Attitudes Toward
Pain Symptoms
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What assumptions do staff make about pain in people who have DD:
■ Their nervous systems are so different pain is not a problem
■ Their intellectual disabilities mean they don’t understand and therefore don’t feel pain
■ They don’t feel pain as intensely
Staff Attitudes Toward
Pain Symptoms
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Cultural Perspectives in the
Assessment of Pain
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■ Generational cohort (i.e., Boomers era vs. GenX)
■ Gender
■ Ethnicity
■ Family of origin attitudes towards pain (i.e., stoic vs. expressive)
Consider Culture in Assessment
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■ How does the recipient handle distress and disappointment?
■ What is the level of equanimity (low, moderate, high) when problems arise?
Resilience
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C Conscientiousness
A Agreeable
N Neuroticism
O Openness
E Extraversion
Personality and Pain Assessment:
Using the 5-Factor Model
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Histrionic/Somatizing
■ Expressiveness
■ Psychological Distress = Physical Sensations Antisocial
■ Instrumental use of pain complaints
Borderline
■ Extreme emotional reactions
■ SIB to generate pain
Personality Disorder Traits
and Pain Assessment
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■ Facial expression
Reliability
Validity
■ Motor behavior
Reliability
Validity
Behavioral Indicators of Pain
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■ Sleep Disturbances
■ Self Injurious Behavior (SIB)
Type
Location
Severity
Frequency
What occurred prior to SIB
What happens right after SIB
Behavioral Indicators of Pain
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■ Eating &/or Food Disturbances
■ Trauma reactions
■ Decreased/absent drive and motivation
■ Decreased/absent task completion
Behavioral Indicators of Pain
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■ Problem behaviors
Interactional
Functional
Verbal
Behavioral Indicators of Pain
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■ If task persistence, effectiveness, or attention are reduced this can be an indicator of pain symptoms.
■ If the recipient’s enjoyment of occupational functioning decreases, this can be an indicator of pain symptoms.
■ Ineffective, irritable, anxious, or sadness in interactions with co-workers or customers can indicate the presence of pain symptoms.
Pain and Occupational Functioning
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■ If observable standards of hygiene or dress are seen to decline, this can indicate the presence of pain symptoms.
■ If physical abilities to perform tasks decline, this can be caused by pain symptoms.
■ Decreased hygiene, poorer dress, and decreased task abilities can lead to negative reactions from other people.
Pain and ADLs
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■ Respiratory rate
■ Heart rate
■ Blood pressure
■ Gait changes
■ Postures
■ Gastrointestinal
Physiological Indicators of Pain
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Pain perceptions are influenced by the following:
■ Physiology
■ Nervous system functioning
■ Cognitive functioning
■ Emotional state
■ Behavioral factors
■ Psychological distress
■ Psychiatric factors
Pain Is Complex
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■ When assessing for pain, consider each variable.
■ Assessment is ongoing and conclusions change with the changes in each component.
Pain Is Complex
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Recipient’s character and history contribute information about experiencing and demonstrating pain symptoms
■ Resilience
■ Temperament
■ Perspective
■ Reaction to pain (nociceptive)
■ Sense of humor
■ Trauma
■ Overall health
Further Pain Assessment Components
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Co-morbidities create a platform for more pain, as well as more frequent and severe pain experiences for those with DD. Co-morbid conditions contributing to pain often include the following: ■ Spasticity ■ Seizures ■ Tobacco/alcohol use ■ Diabetes ■ Cardiac ■ Osteoporosis
Further Pain Assessment Components
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Pain is affected by more than physiology.
Excellent assessment of pain takes the form of the acronym (MESIP):
M
E
S
I
P
Further Pain Assessment Components
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M Medical
E Environmental
S Sensory
I Interactional
P Psychiatric
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■ Level of Disability and Pain
■ Down Syndrome
■ Fragile X Syndrome
■ Autism Spectrum Disorders
■ Dementia
Syndrome-Specific Indicators of Pain
Symptoms
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■ Down Syndrome – common cardiac problems ■ Fragile X Syndrome – mitral valve prolapse is common
creating hypoxia and what looks like anxiety, therefore assess for pain
■ Autism Spectrum Disorders - sensitivity to textures such that cotton feels like sandpaper thus throwing off clothes could be pain from tactile hypersensitivity; pain is stressful which increases movement stereotypies
■ Dementia – pain is stressful, stress worsens dementia symptoms, thus if dementia symptoms worsen look for underlying pain
Syndrome-Specific Indicators of Pain
Symptoms
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■ Each functional level of disability will have a distinct reflection in the pain symptoms the person with DD experiences
■ Overall categories include low, moderate, and severe DD
Level of Disability and Pain
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Mild DD
■ Greater cross-domain expression of pain symptoms
Verbal
Behavioral
Interactional
■ Greater probability of reliable & valid self-report
■ More opportunity to look at consistency among domains
■ Are deficits variable or consistent?
Issues in Assessment
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Moderate DD
■ Often vocal rather than verbal
■ Observational scales and reports more important
■ Proxy reports more important
■ Comparison with recipient’s own baseline and history more important
■ Possibility that pain has contributed to a deterioration of function to this moderately impaired level
Issues in Assessment
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Severe DD
■ Cues may be subtle
■ At best, vocal
■ Observational reports and scales very important
■ Proxy reports very important
■ Any changes in types and rates of behavior including eating, drinking, sleeping, and observable physiological functions very important
Issues in Assessment
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■ Collateral information
Reliability
Validity
Variability
■ Interpretation
Issues in Assessment
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Assessing pain in this population is
■ Complex
■ Diverse
■ Requires examinations of different areas of functioning
■ Requires frequent updating of assessments because functioning in any of the areas of assessment can change.
Issues in Assessment
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■ Mood
■ Agitation/irritability
■ Learned helplessness/ acquiescence
■ Psychiatric status
■ Overall interactions with assessor
Issues in Assessment
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■ Conditions and experiencing pain symptoms can change over time
Physical condition contributing to pain
Cognitive impairment due to pain
Cognitive impairment due to medical problem
Issues in Assessment
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Co-Existing DD & Pain
with Psychiatric Symptoms
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■ Psychosis
■ Depression
■ Bipolar Illness
■ Dementias
■ Behavioral problems
Mental Health Issues
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■Hallucinations
Delusions
Disorganization
Psychosis
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Psychotic symptoms
■ May mask pain symptoms
■ May be worsened by pain symptoms
■ May interfere with communication about pain symptoms
■ Decrease ability to cope with pain
■ Disorganized cognitive processes may cause insensitivity or hypersensitivity to pain
Pain and Psychosis
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■Major Depression
■Bipolar Illness
Affective Disorder
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■ Major depression is diagnosed more commonly in the DD population than in the general population
■ Episodes of depression can have strong impacts on people who have DD functioning
■ Unfortunately, depression is often either undetected or detected only after long delays
Depression
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■ Sometimes the non-verbal, observed changes are your 1st indication
■ Sadness including crying
■ Withdrawal
■ Poor PO intake
■ Disturbed sleep
■ Irritability
■ Anxiety
■ Potential for mood congruent psychosis
Communicating Depression
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Depressive symptoms
■ May mask pain symptoms
■ Increase the incidence of pain experiences
■ Increase the intensity of pain
■ Decrease ability to cope with pain
Pain and Depression
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■ Bipolar illness has a 2- to 3-fold greater prevalence in the cognitively impaired than in the general population
■ Bipolar depression can require different treatment than major depression
■ Symptom topography and disease subtype can develop and change over time requiring tracking & adjustments of interventions
Bipolar Illness
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■ I Manic and Depressed episodes
■ II Hypomanic and Depressed episodes
Rapid Cyclers
4+ episodes/year
Mania can be accompanied by psychosis
Several Subtypes
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D Distractibility
I Insomnia
G Grandiosity
F Flight of Ideas
A Agitation
S Speech
T Thoughtlessness (Impulsivity)
Manic Symptoms
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Manic symptoms
■ The high activity level may distract from pain symptoms
■ May mask pain experiences
■ Increase irritability & agitation
■ Decrease the intensity of pain
■ Decrease ability to cope with pain
Pain and Bipolar Illness
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Depressive symptoms (same as in Depression)
■ May mask pain symptoms
■ Increase the incidence of pain experiences
■ Increase the intensity of pain
■ Decrease ability to cope with pain
Pain and Bipolar Illness
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■ Agitation
■ Verbal outbursts or sustained yelling
■ Mealtime issues
■ Physical acting out
Pain and Alzheimer’s Dementia
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Many medications treating dementia are acetylcholinesterase inhibitors (also called cholinesterase inhibitors)
■ Common GI side effects
Nausea
Pain
■ Hazards and Benefits
Pharmacological Treatment
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Some problems unique to this population are environmental impacts. People with DD are more sensitive to the following:
■ Ambient Environment
■ Changes
■ Health Impacts
■ Functional Impacts
Environmental Impacts
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■ Longstanding substance use/abuse
■ Self-medication
■ Misunderstandings/misconceptions
■ Inadvertent
Substance Abuse Issues
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■ Alcohol is a depressant
■ Self-medicating to treat a depression is very common
Depression & Substance Abuse
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Clinical Issues
■ Psychiatric Symptoms (or increased symptoms)
■ Poor Treatment Compliance
■ Increased Need for and Use of Emergency Health Care Services
■ Poor Response to Medications
Complications that Arise from Combining
Substance Abuse with DD
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■ Unstable Clinical Course
■ Increased Hospitalization
■ Chronic Threats to Health
■ Increased Risk of Tardive Dyskinesia
Clinical Issues
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■Behavioral Problems
■Suicide
■Homelessness
■Violence
Forensic Issues
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■ Substance abuse may be self medication of pain
■ DD recipients may seek pain meds as a substitute for whatever substance they were dependent upon (i.e., alcohol, marijuana)
■ May more easily become addicted to analgesics because of limited cognitive abilities
■ May see more pain complaints as an indicator of increased risk of substance abuse relapse
Pain and Substance Abuse Issues
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This unique population must have treatment for various problems in a way that
■ Recognizes the consumer’s skill level
■ Acknowledges the durable deficits
■ Incorporates behavioral interventions
■ Arranges care in a logical manner
■ Allows for flexibility
Understanding Treatment for DD,
Psychiatric Symptoms & Pain
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■ Glucose dysregulation
■ Hypoxia
■ Infections
■ Seizures
■ Circulatory
■ Hydration
■ Metabolic encephalopathy
Pain Can Signal These
Physical Health Concerns
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■ Neurological problems
■ Incontinence
■ Poor renal functioning
■ Stomach problems
■ Medication side effects
■ Anticholinergic
Pain Can Signal These
Physical Health Concerns
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■ Persistence of pain of any particular type can result from simultaneous different problems.
■ Therefore, if treating a diagnosed problem causing pain and the pain persists, we need to consider that another problem may be present as well.
Physiologic Impacts of Pain
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■ Scale
■ Observations
■ Interpretations
■ Examples of Effective and Ineffective Documentation
Documentation of Pain Assessment