Assessing
in Patients with Cerebral Palsy
Hiroko Matsumoto, MA, PhDc
Director of Research, Weinberg Family Cerebral Palsy Center at Columbia University
Associate Director of Research, Division of Pediatric Orthopaedics
Department of Orthopaedic Surgery
Columbia University Medical Center
AAPM&R Annual Assembly
November 2014
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Author Disclosures
 Research Support: Children’s Spine Foundation, SRS, POSNA, CPIRF
 Travel Support: Biomet, Medtronic, DePuy Synthes, Stryker
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Introduction
 Patients frequently seek medical attention for pain, the #1 most
common reason for visits to the ED (Chang et al, 2014).
 Experience of pain is subjective (Nakada et al., 2013; DeVon et
al., 2014).
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No Objective Measure of Physical Pain
 Functional MRI studies have shown that the same neural areas
recruited in the experience of physical pain are associated with the
experience of emotional pain (Eisenberger et al., 2003; Singer et
al., 2004; Heckel et al., 2011).
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Eisenberger et al., 2003
No Objective Measure of Physical Pain
 Although various inflammatory biomarkers may have higher
levels during increased report of both acute and chronic pain, no
one biomarker can currently assess pain w/ accuracy or certainty.
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DeVon et al., 2014
The Gold Standard
 Because no objective measure to assess pain exists…
Self-report
is the gold-standard (Schiavenato and Craig, 2010).
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Pain: Self-Report Tools
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Wong-Baker FACES Pain Rating Scale
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Wrong DL, Hockenberry-Eaton M, Wilson D, Winkelstein ML, Schwartz P: Wong’s Essentials of Pediatric Nursing, 6/e, St. Louis, 2001,
P.1301
Numeric Graphic Rating Scale
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McCaffery M, et al, Pain: Clinical Manual 1999, p. 16.
Visual Analog Scale
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Williamson A and Hoggart B. Pain: a review of three commonly used pain rating scales. Journal of Clinical Nursing 14, 2005; 798-804.
Colored Analog Scale
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Santos and Castanho, Am J Alzheimer’s Dis Other Demen June 2014, 29(4): 320-325.
Verbal Rating Scale
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Margo McCaffery, RN, MS, FAAN and Chris Pasero, RN, MSNc: Pain Clinical Manual, 2nd Edition, 1999, p.63.
Pain Thermometer
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Herr: Pain Med 2007 Oct-Nov;8(7):585-600.
Where is Your Pain?
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Pain, Vol 1, Melzack R, The McGill Pain Questionnaire: major properties and scoring methods 1975, 277-299.
Brief Pain Inventory
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http://www.npcrc.org/files/news/briefpain_short.pdf
CP CHILD, Self-Report
Caregiver Priorities and Child Health Index of Life with Disabilities
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http://www.sickkids.ca/Research/CPCHILD-Questionaire/CPChild-Questionaire.html
CP QOL-Child, Self-Report
Cerebral Palsy Quality of Life for Children
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http://www.cpqol.org.au/V2%20CPQOL%20child%20report%20Q%209-12.pdf
Pain: Proxy-Report
and Observational Tools
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FLACC Pain Scale
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Gomez et al., (2013)
CP CHILD, Proxy-Report
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http://www.sickkids.ca/Research/CPCHILD-Questionaire/CPChild-Questionaire.html
CPS-NAID
Chronic Pain Scale for Nonverbal Adults with Intellectual Disabilities
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Burkitt, Breau, Salsman, Sarsfield-Turner & Mullen (2009)
Abbey Pain Scale
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The Australian Pain Society.
http://www.apsoc.org.au/PDF/Publications/4_Abbey_Pain_Scale.pdf
PADS
Pain and Discomfort Scale for Pain Assessment among Adults with
intellectual disability
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Shinde et al., (2013)
NCAPC
The Non-Communicating Adult Pain Checklist
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Lotan, Moe-Nilssen, Ljunggren, Strand (2010)
DisDAT
Disability Distress Assessment Tool
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Regnard et al., (2006)
CNPI
Checklist of Nonverbal Pain Behaviors
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Behavioral Measures of Pain
 Used in the following populations:
– Infants, young children;
– Children and adults w/ intellectual or communication needs.
 Observe and quantify:
– Vocalizations;
– Facial expressions;
– Body movements.
 Document changes in patterns of daily life:
– Eating;
– Sleeping;
– Play.
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Symptoms versus HRQOL
 All of previous instruments (self-report and proxy/observational),
assess pain symptoms rather than HRQOL.
– Symptom: A physical sign or indication of disease;
– Health Related Quality of Life (HRQOL): Physical, mental,
emotional, social functioning, which takes into account impact
of symptoms (Bjornson and McLaughlin, 2001).
 Both symptoms and HRQOL are patient-reported outcomes,
meaning the patient reports his/her state of wellbeing.
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Importance of HRQOL in CP
 Pain is highly prevalent among patients with CP (Novak et al.,
2012, Schwartz et al. 1999, Engel et al., 2003).
 Pain is inadequately evaluated and treated in patients with CP
(Hirsh et al., 2011).
 Important to measure HRQOL as opposed to symptoms alone:
– Want to know impact of pain on patients’ ability to function in
everyday life.
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Static versus Dynamic
Static Q’s
Dynamic Q’s
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Static versus Dynamic
Static
 Static: Questions to follow do not
change based on patient responses.
 Questions presented in same sequence,
regardless of prior answers.
Questionnaires
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Static versus Dynamic
 Dynamic option: Questions are
presented in changing sequence, with
following sequence based on prior
answers.
 Purpose:
– Minimizes # questions;
– Greater measurement precision;
 Presented as Computer Adaptive Test
(CAT).
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CAT
Computer Adaptive Test
Static versus Dynamic
 Previous instruments, although acceptable for pain assessment are
static instruments.
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PROMIS
 PROMIS: Patient-Reported Outcomes Measurement Information
System.
 NIH-funded psychometric evaluation that has grown significantly
over last several years: (http://www.hhs.gov/asl/testify/t051208a.html)
– $82-million in 1997;
– $90-million since 2004.
 PROMIS measures the following metrics: (NIHPromis.org)
– Patient-reported outcomes: Objective, e.g. symptoms, function
(http://www.nihpromis.org/measures/measureshome)
– Health-related quality of life: Subjective, e.g. how a patient
feels about their symptoms, function
(http://www.nihpromis.org/measures/domainframework1)
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What is PROMIS?
A comprehensive instrument to assess pain and pain behaviors
 “PROMIS creates an opportunity for clinicians and patients to develop a
common language around self-reported health status and in the process allow
better assessment of the unique information from patients thereby enabling
improved quality of care and quality of clinical research.” (NIHPromis.org)
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What is PROMIS?
A comprehensive instrument to assess pain and pain behaviors
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What is PROMIS?
A comprehensive instrument to assess pain and pain behaviors
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What is PROMIS?
A comprehensive instrument to assess pain and pain behaviors
 Universal self-reported pain scoring system, where:
– Higher score means = higher pain intensity;
– Lower score = lower pain intensity.
 Raw scores from short form or Computer Adaptive Test (CAT) are
converted into scaled scores.
 Scaled scores are calibrated so that: (NIHpromis.org/faqs)
– A score of 50-points is the average score of the US population;
– 10 -points is equal to one standard deviation.
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What is PROMIS?
A comprehensive instrument to assess pain and pain behaviors
 One of the biggest advantages of the PROMIS scaled scores is that
they have been adjusted so that adult and pediatric scores can be
compared directly.
Mean: 50
e.g. Raw score of
(Peds pain interference)
40
e.g. Raw score of
(Adult pain interference)
60
Scaled score of:
68%
of population
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What is PROMIS?
A comprehensive instrument to assess pain and pain behaviors
Item Bank
Short Form
914 Q’s
CAT
Computer Adaptive Test
Dynamic Q’s
Static Q’s
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PROMIS
Adult Item Bank: e.g. from Pain Behavior
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PROMIS
Adult Item Bank: e.g. from Pain Interference
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PROMIS
Adult Item Bank: e.g. from Pain Intensity
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PROMIS
Pediatric Item Bank: e.g. from Pain Interference
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Pain Self-Report in IDD Patients
 Communication of a patient’s pain to a treating clinician is limited
by their ability to self-report (Schiavenato and Craig, 2010).
 Patients with Intellectual and Developmental Disabilities (IDD)
have motor, sensory, and/or cognitive impairments leading to
difficulty conveying their experiences and thus, their pain.
 Currently, no comprehensive method exists to assess the level of
pain in all IDD patients.
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COMPAs: Future Work
 COMPAs: NIH R01 grant
– Creation of Outcome Measures in Pain Assessment;
– Empowering Disabled Persons.
Proxy
Self
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COMPAs: Future Work
 COMPAs: NIH R01 grant
– Creation of Outcome Measures in Pain Assessment;
– Empowering Disabled Persons.
Proxy
Self
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COMPAs: Future Work
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Key Summary Points
 Importance of measuring pain health related quality of life, not
just pain symptoms.
 PROMIS is a robust and comprehensive NIH-funded tool to
measure health related quality of life.
 Dynamic CAT versions of instruments allow for greater precision
with less examiner burden than static instruments.
 PROMIS is a unique HRQOL tool with scaled scores to directly
compare:
– Pediatric v. adult scores;
– Self v. proxy scores.
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Thank You!
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