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8/15/2017
1
Pain Assessment Without Borders:Keeping chronic pain assessment at the forefront of
care for children with cerebral palsy
Ashleigh Townley, Chantel Barney, Jean Stout, Jean StansburySeptember 16, 2017
Objectives
• Learn about the:
– Chronic Pain Assessment Toolbox for Children with Disabilities
– Implementation of the Toolbox in a Canadian context
– Utility of a Train-the-Trainer model
– Tailoring the Toolbox to an American context
– Clinical impact of systematically assessing chronic pain
– Perspectives from front-line clinicians
• Explore how you can apply the Toolbox to your context
Evidence-informed care is anexpectation of all health care
professionals in leading academichealth sciences centres
around the world;
however ensuring that it happensconsistently is not easily achieved
Knowledge Translation
Getting the right informationto the right peoplein the right formatat the right time
with good impact
• Largest children’s rehabilitation hospital in Canada
• Vision: Create a world of possibility for kids with disability
• Teaching hospital fully affiliated with the University of Toronto
• Onsite Bloorview Research Institute
• Teaching and Learning Institute
Holland Bloorview Kids Rehabilitation Hospital
ShaunaKingsnorthEvidence toCare Lead
ChristineProvvidenzaKnowledgeTranslationSpecialist
JoannaWincentakKnowledge
Broker
AshleighTownley
KnowledgeBroker
The Evidence to Care Team
8/15/2017
2
Research in childhood disability
Considerations of usingresearch in healthcare
1950
Evidence-basedmedicine movement
1990
1975
Pediatric rehabilitationas an independent field
of study
Knowledge translationmodels gain recognition
2000
Our vision is to promote the best availableresearch evidence to inform care in
childhood disability.
Photo by Hammonton Photography - Creative Commons Attribution-NonCommercial License https://www.flickr.com/photos/25880282@N04 Created with Haiku Deck
2. Merskey et al., 1979; 3. McCaffery et al.,1989; 4. IASP, 1986; 5. Merskey et al., 1994; 6. Dickinson et al., 2007
Select, tailor,implement
intervention
Assess barriersto knowledge
Use
Adaptknowledge tolocal context
Identify problem---------------
Identify, review,select knowledge
Sustainknowledge use
Evaluateoutcomes
Monitorknowledge use
www.hollandbloorview.ca/toolbox
Chronic Pain Toolbox for Children withDisabilities
8/15/2017
3
Review of Clinical Practice Guidelines
Clinical practice points =Disability lens
Systematic review=
Chronic paintools
Toolbox Implementation
• Implemented in 7 outpatient clinics at Holland Bloorview
Kids Rehabilitation Hospital
• Multi-component iKT strategy:
– Interactive consensus meetings to select tools
– Clinic flow pattern assessment
– Champions
– Education campaign
– Staff check-ins
– Documentation optimization
– Audit & feedback
Photo by Hamed Saber - Creative Commons Attribution License https://www.flickr.com/photos/44124425616@N01 Created with Haiku Deck
Pain champions
Photo by zeevveez - Creative Commons Attribution License https://www.flickr.com/photos/29001414@N00 Created with Haiku Deck
Consensus activity
8/15/2017
4
Photo by Mark Brannan - Creative Commons Attribution-NonCommercial-ShareAlike License https://www.flickr.com/photos/23403402@N00 Created with Haiku Deck
Education campaign
Photo by joncandy - Creative Commons Attribution-ShareAlike License https://www.flickr.com/photos/37195744@N03 Created with Haiku Deck
11. Provost et al., 2013
Huddles
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Documentation
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Audit & feedback
Impact
• 96% of children with pain had an assessment documented
• Clinicians think the Toolbox has led to some important changes:
– Assessing chronic pain more routinely and consistently
– Raised awareness of the need for explicit chronic painassessment
– More likely to use a validated pain assessment tool
– Talking about pain more directly, using more specific language
– More of a focus on pain interference/impact on daily activities
Knowledge push:
• Conferences• Webinars
• Twitter• Facebook
• Promotional materials
8/15/2017
5
AACPDM Transformative Practice Award
Dr. Chantel Barney Dr. Shauna Kingsnorth
Where are we?
Transformative Practice Award Parameters
• KT specific funding
• 15 month project
• $4000 USD
• In-kind time
• Tailoring of implementationstrategies to local context
• Barriers and facilitatorsassessment
• 2 onsite visits
Train-the-TrainerModel=
Contextual Factors – KT
Holland Bloorview
• KT Hub in existence for 3 years
– KT model & practices established
• 4 full-time KT experts
Gillette Children's
• Beginning of KT journey
– Exploring KT models & practices
• 1 part-time KT novice scientist
• Both sites:
• Senior managementsupport for KT
• Funding for KT roles
• Leads for pain project
• External funding key toproject progression
Contextual Factors – Pain Practice
Holland Bloorview
• Toolbox = demonstration projectwith Ministry of Health funding
• Protected time – 5 days per wk
Gillette Children's
• Toolbox = side of desk project
• Protected time – ½ day per wk
• Both sites:
• Academic and researchhospitals
• Pediatric focused
• Similar patient population
• Pain treated as the 5th vitalsign
Train-the-Trainer Model
• Relationship built on:
– Trust
– Transparency
• Core T-T-T activities:
– KT capacity building
– Openly shared all project documentsand templates
– Implementation strategy adaptation
– Evaluation and sustainability support
– Weekly coaching calls
– Comprehensive implementation plan
– Shared cloud storage service
– Decision/action log
– Face to face visits
• Enablers:
Processes
Accountability
Clear & frequentcommunication
Passionate people!
8/15/2017
6
GILLETTE CHILDREN’S SPECIALTY HEALTHCARELargest Rehabilitation Hospital in the upper mid-west, USA60 Inpatient beds4,000 patients with CP seen annually
GILLETTE CHILDREN’S SPECIALTY HEALTHCARELargest Rehabilitation Hospital in the upper mid-west, USA60 Inpatient beds4,000 patients with CP seen annually
KNOWLEDGE TRANSLATIONA GILLETTE PRIORITY
Looking todevelop a KTframework
Looking formodels of how
KT works
Clinical need forsystematic
assessment &documentationof chronic pain
KNOWLEDGE TRANSLATIONA GILLETTE PRIORITY
Gillette GOALS:• Improve chronic pain assessment for our patients
• Cultivate experience using the Knowledge-to-Action Cycle
8/15/2017
7
IMPLEMENTATION AT GILLETTE
Select, tailor,implement
intervention
Assess barriersto knowledge
Use
Adaptknowledge tolocal context
Identify problem---------------
Identify, review,select knowledge
Sustainknowledge use
Evaluateoutcomes
Monitorknowledge use
GETTING STARTEDADAPTING TO THE GILLETTE CONTEXT
Selectknowledge
Adapt tolocal context
Assessbarriers
Select, tailor,implement
Monitorknowledge
use
Evaluateoutcomes
Sustainknowledge
use
Knowledge toaction cycle
Selected clinics based on:
– CP population ITB pump maintenance clinics
– Risk for chronic pain Chronic pain clinics
– Feasibility Center for Gait & Motion Analysis
Provided baseline pain education to providers
– Clinical practice points provided in Toolbox
Created a process to store/audit in eDocs
PLANNING FOR SUCCESSIDENTIFYING BARRIERS AND FACILIATATORS
Selectknowledge
Adapt tolocal context
Assessbarriers
Select, tailor,implement
Monitorknowledge
use
Evaluateoutcomes
Sustainknowledge
use
Knowledge toaction cycle
Barriers
– Time constraints in clinic
– Maintaining clinic flow
– Outreach staff not on site for check-ins
– Learning curve/ time lag for making clinical decisionsbased on the data collected
– Interpretation of scores
Facilitators
PLANNING FOR SUCCESSIDENTIFYING BARRIERS AND FACILIATATORS
Selectknowledge
Adapt tolocal context
Assessbarriers
Select, tailor,implement
Monitorknowledge
use
Evaluateoutcomes
Sustainknowledge
use
Knowledge toaction cycle
Barriers
Facilitators
– Senior Leadership support for project
– Extreme willingness of providers
– Grant supported
– Audit process largely in place via eDocs
– Gait Lab had pre-clinic survey process in place
TOOL USAGECHOSEN TOOLS AT GILLETTE
Selectknowledge
Adapt tolocal context
Assessbarriers
Select, tailor,implement
Monitorknowledge
use
Evaluateoutcomes
Sustainknowledge
use
Knowledge toaction cycle
– Consensus building exercise to select tools to meetclinical needs
– Trial of chosen tools - Fall 2015
– Developed a new clinic process to integrate tools
– “Go live” with tools January 2016
TOOL USAGECHOSEN TOOLS AT GILLETTE
Selectknowledge
Adapt tolocal context
Assessbarriers
Select, tailor,implement
Monitorknowledge
use
Evaluateoutcomes
Sustainknowledge
use
Knowledge toaction cycle
Intrathecal Baclofen Pump Management Clinics• Paediatric Pain Profile
• PROMIS (child & parent report versions)
Chronic Pain Physician Specialists• Non-communicating Children’s Pain Checklist
• Pediatric Pain Questionnaire
• Paediatric Pain Profile
• Brief Pain Inventory
• Bath adolescent pain questionnaire(s)
• The Pain STAGES of change questionnaire – pain coping
Center for Gait and Motion Analysis• Child Self Efficacy Scale (CSES) – pain coping
8/15/2017
8
TOOL USAGECHOSEN TOOLS AT GILLETTE
Selectknowledge
Adapt tolocal context
Assessbarriers
Select, tailor,implement
Monitorknowledge
use
Evaluateoutcomes
Sustainknowledge
use
Knowledge toaction cycle
Intrathecal Baclofen Pump Management Clinics• Paediatric Pain Profile• PROMIS (child & parent report versions)• Brief Pain Inventory
Chronic Pain Physician Specialists• Non-communicating Children’s Pain Checklist• Pediatric Pain Questionnaire -> APPT• Paediatric Pain Profile• Brief Pain Inventory• Bath adolescent pain questionnaire(s)• The Pain STAGES of change questionnaire – pain coping
Center for Gait and Motion Analysis• Child Self Efficacy Scale (CSES) – pain coping
KEY STAKEHOLDERSIDENTIFIED AT GILLETTE
Selectknowledge
Adapt tolocal context
Assessbarriers
Select, tailor,implement
Monitorknowledge
use
Evaluateoutcomes
Sustainknowledge
use
Knowledge toaction cycle
– Providers Implementing the tools
– Nursing support staff
– Clinic Supervisors
– Clinic Directors
– Medical Director
– Health Information Services – audit process
– Research personnel – audit process
– Communications Team
Selectknowledge
Adapt tolocal context
Assessbarriers
Select, tailor,implement
Monitorknowledge
use
Evaluateoutcomes
Sustainknowledge
use
Knowledge toaction cycleDATA
TOOL USAGE AT GILLETTE
– Monthly data pulls to assess uptake of the tools
– Graphic feedback to clinicians
– Support provided as needed
– Tools adjusted to meet clinical & feasibility needs
Selectknowledge
Adapt tolocal context
Assessbarriers
Select, tailor,implement
Monitorknowledge
use
Evaluateoutcomes
Sustainknowledge
use
Knowledge toaction cycleDATA
TOOL USAGE AT GILLETTE
0
10
20
30
40
50
60
70
80
90
100
JAN FEB MAR APR MAY JUN JUL AUG SEP OCT
Pe
rce
nt
Imp
lem
en
tati
on
% Pediatric Patients with Chronic Pain Assessment Completed
Selectknowledge
Adapt tolocal context
Assessbarriers
Select, tailor,implement
Monitorknowledge
use
Evaluateoutcomes
Sustainknowledge
use
Knowledge toaction cycleDATA
TOOL USAGE AT GILLETTE
260
4218
66
91
64
BPI
NCCPC-R
PPQ
PROMIS
PPP
CSES
44%
12%
15%
16%
6%6%
Selectknowledge
Adapt tolocal context
Assessbarriers
Select, tailor,implement
Monitorknowledge
use
Evaluateoutcomes
Sustainknowledge
use
Knowledge toaction cycleDATA
TOOL USAGE AT GILLETTE
221
4218
66
91
64
Chronic Pain
Pain Coping
44%56%
8/15/2017
9
Selectknowledge
Adapt tolocal context
Assessbarriers
Select, tailor,implement
Monitorknowledge
use
Evaluateoutcomes
Sustainknowledge
use
Knowledge toaction cycleDATA
TOOL USAGE AT GILLETTE
221
4218
66
91
64
221281
541 TOTAL ASSESSMENTS
800+ THOROUGH CHRONIC PAIN ASSESSMENTS COMPLETED
Selectknowledge
Adapt tolocal context
Assessbarriers
Select, tailor,implement
Monitorknowledge
use
Evaluateoutcomes
Sustainknowledge
use
Knowledge toaction cycleEVALUATION
What’s Next Survey
– Determine how the tools were working
Rapid Fire Interviews
– Assess clinical utility
– Identify areas of success
– Identify long term supports needed
– Sustainability ideas
EVALUATION
Time to useClinically
usefulI want to
keep usingBest fit
GMFCS levels
PPP (n=6)3-5 mins
Agree (4)Unsure (2)
Yes (6) IV-V
PROMIS (n=3)< 2 mins Agree (3)
Yes (1)Unsure (2)
child: I-IIIparent: III
NCCPC-R (1)6-10 mins Agree (1) Yes (1) IV-V
CSES (n=3)< 2 mins
Agree (2)Unsure (1)
Yes (2)Unsure (1)
I-IV
PPP (n=6)
PROMIS (n=3)
NCCPC-R (n=1)
CSES (n=3)
EVALUATION
What do you like? What don’t you like?
• Easy to administer• Comprehensive• Provides information on
comfort/spasticity even whenparents say pain is not an issue.
• Some behaviors measured are notspecific to pain
• Quick and easy to use• Provides more information• Less involved children can report
• Some items are not applicable• ‘when I had pain’ can be confusing
• The breadth and depth of thequestions for non-verbal children
• Nothing
• Simple and quick• Provides a dimension of pain coping
that we don’t otherwise collect
• Not always relevant• Psychometric properties unknown• No cut score
CSES (n=3)
NCCPC-R (n=1)
PROMIS (n=3)
PPP (n=6)
EVALUATIONHow is the information used in clinical practice?
• Characterizing pain, distress, and comfort• Used in relation to changing baclofen dose• Nice baseline for comparison over time/after intervention• Interventions can be made using this information
• Used in relation to changing baclofen dose• Compare scores over time• Gives us some information on function• It can expose the ways the child is impacted
• Gain better understanding of how the symptoms impact day-to-day life
• Score is provided in pain section of dictation• Information can prompt conversations about pain
CSES (n=3)
NCCPC-R (n=1)
PROMIS (n=3)
PPP (n=6)
EVALUATIONOverall, what do you think of the toolbox?
“It is far better than previous pain scales”
“I think it is helpful in clinic. I would like more direction on what to dowith high scores to properly address their pain, especially if they cannot
get a palliative care appointment right away.”
“This has been a great addition to our plan of care”
“It’s OK, but really hasn't changed my practice”
“It helps to make the assessment quick and easy and gives goodinformation”
“It is good to have tools for verbal & non verbal kids”
8/15/2017
10
Selectknowledge
Adapt tolocal context
Assessbarriers
Select, tailor,implement
Monitorknowledge
use
Evaluateoutcomes
Sustainknowledge
use
Knowledge toaction cycle
SUSTAINABILITYAT GILLETTE
Planning informed by clinicians:
– Rapid fire interview & What’s next survey
– Workshop with visioning exercise
Gillette Toolbox Education Impact
Paediatric Pain Profile (non-verbal)Non-Communicating Children’s Pain Checklist (non-verbal)Brief Pain Inventory (all patients)Gillette-specific ‘Clinical Practice Points’
GILLETTE TOOLBOX
Internal newslettersRounding to relevant department meetingsBroad push by Clinical EducatorsCreation of staff training materialsChoosing additional target clinics
EDUCATIONAL CAMPAIGN
8/15/2017
11
Use clinical data for research purposes – Ethics approvedCollected chronic pain and patient factors from medical recordsDissemination of findings internally and externally
IMPACT
MOVING PAIN ASSESSMENT FORWARDA GILLETTE PRIORITY
NEXTAdditional clinics invited to participateInclude in electronic formatEducate and empower patients & families
Case Studies
“Mary” – ITB Dose Change“Casey” – Seating Evaluation
“Michael” – Surgery (pump & catheter revision)“Taylor” – ITB Dose Change
-the tools are quick and easy to use
-families like them!
-they can provide a concrete focus for clinical interventions
-the PPP collects data on distressing symptoms
CHOICE OF TOOL
Decision to add an Outcome Tool on a Dimension not Currently Assessing
8/15/2017
12
CHOICE OF TOOL
Potential to identify children who may be at risk for challengeswith pain management.
RESEARCH 2016
Data Completion Rate: 90% (427/473)
59%18%
12%
4%6%
1%
CP
Ortho
Neuro
Myelo
Genetic
Other
No Pain
Pain
37%52%
33%48% 46%
63%48%
67%52% 54%
CP (N=252) Ortho (N=77) Neuro (N=51) Myelo (N=19) Genetic (N=24)
PERCENTAGE OF PATIENTS WITH PAIN BY DIAGNOSIS
INCORPORATION INTO CLINICAL REPORT
Pain: Lydia complained of no pain or sensory issues during today's evaluation. Her mother reports that sheroutinely complains of pain in both feet with walking short or long distances, standing, stairs or uneven terrain,or at the beginning or end of the day. The Child Self-Efficacy Scale indicates that her mother is very unsure of herability to do things when she is in pain. Pediatric Outcome Data Collection Instrument pain score alsocorroborates some level of pain.
Child Self-Efficacy Scale - Parent (CSES-Parent): 307 = very sure able to do things when in pain21 = in the middle with regard to ability to do things when in pain35 = very unsure able to do things when in pain
NEXT STEPSGoal: Identify children who may be at risk for challenges with painmanagement.
Method: Follow a group of children through orthopaedic procedureand post-op gait analysis with pre-operative pain coping concerns.