Columbia Orthopaedics Hiroko Matsumoto, MA, PhDc Director of Research, Weinberg Family Cerebral Palsy Center at Columbia University Associate Director

Columbia Orthopaedics

Assessing

PAINin Patients with Cerebral Palsy

Hiroko Matsumoto, MA, PhDcDirector of Research, Weinberg Family Cerebral Palsy Center at Columbia University

Associate Director of Research, Division of Pediatric OrthopaedicsDepartment of Orthopaedic SurgeryColumbia University Medical Center

AAPM&R Annual AssemblyNovember 2014


Author Disclosures

Research Support: Children’s Spine Foundation, SRS, POSNA, CPIRF

Travel Support: Biomet, Medtronic, DePuy Synthes, Stryker


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).


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).

Eisenberger et al., 2003


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.

No Objective Measure of Physical Pain

DeVon et al., 2014


The Gold Standard

Because no objective measure to assess pain exists…

Self-reportis the gold-standard (Schiavenato and Craig, 2010).


Pain: Self-Report Tools


Wong-Baker FACES Pain Rating Scale

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

McCaffery M, et al, Pain: Clinical Manual 1999, p. 16.


Visual Analog Scale

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

Santos and Castanho, Am J Alzheimer’s Dis Other Demen June 2014, 29(4): 320-325.


Verbal Rating Scale

Margo McCaffery, RN, MS, FAAN and Chris Pasero, RN, MSNc: Pain Clinical Manual, 2nd Edition, 1999, p.63.


Pain Thermometer

Herr: Pain Med 2007 Oct-Nov;8(7):585-600.


Where is Your Pain?

Pain, Vol 1, Melzack R, The McGill Pain Questionnaire: major properties and scoring methods 1975, 277-299.


http://www.npcrc.org/files/news/briefpain_short.pdf

Brief Pain Inventory


CP CHILD, Self-ReportCaregiver Priorities and Child Health Index of Life with Disabilities

http://www.sickkids.ca/Research/CPCHILD-Questionaire/CPChild-Questionaire.html


CP QOL-Child, Self-ReportCerebral Palsy Quality of Life for Children

http://www.cpqol.org.au/V2%20CPQOL%20child%20report%20Q%209-12.pdf


Pain: Proxy-Reportand Observational Tools


FLACC Pain Scale

Gomez et al., (2013)


CP CHILD, Proxy-Report

http://www.sickkids.ca/Research/CPCHILD-Questionaire/CPChild-Questionaire.html


CPS-NAID

Burkitt, Breau, Salsman, Sarsfield-Turner & Mullen (2009)

Chronic Pain Scale for Nonverbal Adults with Intellectual Disabilities

Columbia OrthopaedicsThe Australian Pain Society.http://www.apsoc.org.au/PDF/Publications/4_Abbey_Pain_Scale.pdf

Abbey Pain Scale


PADS

Shinde et al., (2013)

Pain and Discomfort Scale for Pain Assessment among Adults with intellectual disability


NCAPC

Lotan, Moe-Nilssen, Ljunggren, Strand (2010)

The Non-Communicating Adult Pain Checklist


Disability Distress Assessment ToolDisDAT

Regnard et al., (2006)


Checklist of Nonverbal Pain BehaviorsCNPI


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.


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.


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.


Static Q’s Dynamic Q’s

Static versus Dynamic


Static: Questions to follow do not change based on patient responses.

Questions presented in same sequence, regardless of prior answers.


Static

Questionnaires


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).


CATComputer Adaptive Test



Previous instruments, although acceptable for pain assessment are static instruments.


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)


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)



3 components

439 Q’s

325 Q’s

150 Q’s



82 Q’s in item bank



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.



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

40 60

Scaled score of:

60

e.g. Raw score of 19(Peds pain interference)

e.g. Raw score of 16(Adult pain interference)

68%of population



Item Bank

Short Form

Static Q’s

CATComputer Adaptive Test

Dynamic Q’s

914 Q’s


PROMISAdult Item Bank: e.g. from Pain Behavior


PROMISAdult Item Bank: e.g. from Pain Interference


PROMISAdult Item Bank: e.g. from Pain Intensity


PROMISPediatric Item Bank: e.g. from Pain Interference


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.


COMPAs: Future Work

COMPAs: NIH R01 grant– Creation of Outcome Measures in Pain Assessment;– Empowering Disabled Persons.

SelfProxy


COMPAs: Future Work

COMPAs: NIH R01 grant– Creation of Outcome Measures in Pain Assessment;– Empowering Disabled Persons.

SelfProxyModified

Self


COMPAs: Future Work


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.


Thank You!

Documents

Columbia Orthopaedics Hiroko Matsumoto, MA, PhDc Director of Research, Weinberg Family Cerebral Palsy Center at Columbia University Associate Director