in Patients with Cerebral Palsy Hiroko Matsumoto, MA, PhDc Assessing PAIN 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 Once done, send to DPR again for review. For final, send to HM and Kim so they can make theirs flow w/ his too. AAPM&R Annual Assembly November 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

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. DeVon et al., 2014

is the gold-standard (Schiavenato and Craig, 2010). Because no objective measure to assess pain exists… Self-report is 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.

Brief Pain Inventory http://www.npcrc.org/files/news/briefpain_short.pdf

Caregiver Priorities and Child Health Index of Life with Disabilities CP CHILD, Self-Report http://www.sickkids.ca/Research/CPCHILD-Questionaire/CPChild-Questionaire.html

CP QOL-Child, Self-Report Cerebral Palsy Quality of Life for Children CP QOL-Child, Self-Report http://www.cpqol.org.au/V2%20CPQOL%20child%20report%20Q%209-12.pdf

and Observational Tools Pain: Proxy-Report and Observational Tools

FLACC Pain Scale Gomez et al., (2013)

CP CHILD, Proxy-Report http://www.sickkids.ca/Research/CPCHILD-Questionaire/CPChild-Questionaire.html

Chronic Pain Scale for Nonverbal Adults with Intellectual Disabilities CPS-NAID Burkitt, Breau, Salsman, Sarsfield-Turner & Mullen (2009)

Abbey Pain Scale The Australian Pain Society. http://www.apsoc.org.au/PDF/Publications/4_Abbey_Pain_Scale.pdf

Pain and Discomfort Scale for Pain Assessment among Adults with intellectual disability PADS Shinde et al., (2013)

The Non-Communicating Adult Pain Checklist NCAPC Lotan, Moe-Nilssen, Ljunggren, Strand (2010)

Disability Distress Assessment Tool DisDAT Regnard et al., (2006)

Checklist of Nonverbal Pain Behaviors CNPI

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 versus Dynamic Static Q’s Dynamic Q’s

Static Static versus Dynamic Questionnaires Static: Questions to follow do not change based on patient responses. Questions presented in same sequence, regardless of prior answers. Questionnaires

Computer Adaptive Test Static versus Dynamic CAT Computer Adaptive Test 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).

Static versus Dynamic 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)

A comprehensive instrument to assess pain and pain behaviors 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)

A comprehensive instrument to assess pain and pain behaviors What is PROMIS? A comprehensive instrument to assess pain and pain behaviors 439 Q’s 3 components 325 Q’s 150 Q’s

A comprehensive instrument to assess pain and pain behaviors What is PROMIS? A comprehensive instrument to assess pain and pain behaviors 82 Q’s in item bank

A comprehensive instrument to assess pain and pain behaviors 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.

A comprehensive instrument to assess pain and pain behaviors 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. e.g. Raw score of 19 (Peds pain interference) Mean: 50 e.g. Raw score of 16 (Adult pain interference) 40 60 Scaled score of: 60 68% of population

A comprehensive instrument to assess pain and pain behaviors What is PROMIS? A comprehensive instrument to assess pain and pain behaviors Item Bank Short Form CAT Computer Adaptive Test 914 Q’s Static Q’s Dynamic Q’s

Adult Item Bank: e.g. from Pain Behavior PROMIS Adult Item Bank: e.g. from Pain Behavior Presentation should be item bank Try to include pain intensity from ADULT question bank; if can’t find it CALL!! – from website or ask Julie. Handouts will be both question bank and short form. Include one example of each; provide entire in handouts. Circle well-written items that he can read out.

Adult Item Bank: e.g. from Pain Interference PROMIS Adult Item Bank: e.g. from Pain Interference Presentation should be item bank Try to include pain intensity from ADULT question bank; if can’t find it CALL!! – from website or ask Julie. Handouts will be both question bank and short form. Include one example of each; provide entire in handouts. Circle well-written items that he can read out.

Adult Item Bank: e.g. from Pain Intensity PROMIS Adult Item Bank: e.g. from Pain Intensity Presentation should be item bank Try to include pain intensity from ADULT question bank; if can’t find it CALL!! – from website or ask Julie. Handouts will be both question bank and short form. Include one example of each; provide entire in handouts. Circle well-written items that he can read out.

Pediatric Item Bank: e.g. from Pain Interference PROMIS Pediatric Item Bank: e.g. from Pain Interference Presentation should be item bank Try to include pain intensity from ADULT question bank; if can’t find it CALL!! – from website or ask Julie. Handouts will be both question bank and short form. Include one example of each; provide entire in handouts. Circle well-written items that he can read out.

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

COMPAs: Future Work Modified Self Proxy Self COMPAs: NIH R01 grant Creation of Outcome Measures in Pain Assessment; Empowering Disabled Persons. Modified Self Proxy 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!