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ICHOM Standard Set of outcomes in Inflammatory Arthritis
Harald Vonkeman, MST & UT
Enschede
IA Working Group 2Copyright © 2017 by the International Consortium for Health Outcomes Measurement. All rights reserved.
IA Working Group 3Copyright © 2017 by the International Consortium for Health Outcomes Measurement. All rights reserved.
Value Based Health Care
Patient journey
Kosten
GezondheidszorgBiomedisch
Structuur en Proces -------------> UitkomstErvaringen
Gecreëerde waarde
Uitkomsten die er voor patiënten echt toe doen
Waarde
• Om de balans tussen kosten en gecreëerde waarde in de gezondheidszorg te optimaliseren moeten we in staat zijn om uitkomsten van zorg te vergelijken.
lagere zorguitgaven leiden tot "minder zorg of zorg van slechtere kwaliteit".
IA Working Group 4Copyright © 2017 by the International Consortium for Health Outcomes Measurement. All rights reserved.
International Consortium for Health Outcomes Measurement
MissieOntstaan
Drie organisaties die samen ICHOM hebben opgericht in 2012:
ICHOM is een non-profit organisatie
Value =
Het potentieel van value-based health care ontsluiten door het definiëren van Standaard Sets van uitkomsten die er echt toe doen voor patiënten voor de
meest relevante medische aandoeningen en door het stimuleren van de wereldwijde implementatie en het rapporteren van deze uitkomsten
Cost of delivering those outcomes
Patient health outcomes achieved
IA Working Group 5Copyright © 2017 by the International Consortium for Health Outcomes Measurement. All rights reserved.
Uitkomsten die er voor patiënten echt toe doen ‘Outcomes that matter to patients’
Relevante afspiegeling van kwaliteit van zorg vanuit perspectief van de patiënt
▪ Biomedische proces en biomedische uitkomsten worden gedefinieerd door andere initiatieven, zoals OMERACT
▪ Biomedische perspectief wordt gevangen door professionals en wetenschappers om beter inzicht te krijgen in specifieke ziekten en hun behandeling
Voor optimale uitkomsten van patient-journey hebben we nodig:
▪ Perfecte diagnose en behandeling (biomedische perspectief)
▪ Perfecte hulpverlening en coaching (zorg op maat, gedeelde besluitvorming)
IA Working Group 6Copyright © 2017 by the International Consortium for Health Outcomes Measurement. All rights reserved.
Het doel van een Standaard Set is om gedeelde besluitvorming tussen arts en patiënt te faciliteren, om kwalitatieve informatie over uitkomsten te leveren aan
zorgverleners en instituten, om transparantie en verbetering te stimuleren, en om gelegenheid te creëren
voor vergelijkend onderzoek naar effectiviteit van behandelingen in de dagelijkse praktijk.
ICHOM Standaard Set
IA Working Group 7Copyright © 2017 by the International Consortium for Health Outcomes Measurement. All rights reserved.
Er zijn al een aantal Standaard Sets ontwikkeld
Ook klaar:• Heart Failure▪ Older persons▪ Inflammatory bowel
disease
▪ Pregnancy and childbirth▪ Breast cancer▪ Colorectal cancer
▪ Overactive bladder▪ Craniofacial macrosomia▪ Inflammatory Arthritis
IA Working Group 8Copyright © 2017 by the International Consortium for Health Outcomes Measurement. All rights reserved.
SPONSORS
ICHOM krijgt steeds meer supporters
GOLD
SILVER
BRONZE
STRATEGIC PARTNERS
IA Working Group 9Copyright © 2017 by the International Consortium for Health Outcomes Measurement. All rights reserved.
Instituten die ICHOM Standaard Sets implementeren
IA Working Group 10Copyright © 2017 by the International Consortium for Health Outcomes Measurement. All rights reserved.
ICHOM werkgroepen volgen een iteratief proces van systematische literatuur reviews, focus groepen en Delphi bijeenkomsten en definiëren:
▪ Scope
▪Uitkomst domeinen
▪Meetinstrumenten per domein
▪ Case-mix variabelen
de ICHOM werkgroepen
IA Working Group 11Copyright © 2017 by the International Consortium for Health Outcomes Measurement. All rights reserved.
ICHOM Working group Inflammatory Arthritis
Philip Mease, University of WashingtonJennifer Horonjeff, Patient representativeKaleb Michaud, University of Nebraska Medical CenterJeffrey Curtis, University of AlabamaChristina Hale, Patient representative
Harald Vonkeman (Chair) University of TwenteMart van de Laar (co-Chair)Martijn Oude Voshaar (Senior Research Fellow)Johannes Bijlsma, EULARMaarten de Wit, Patient representativeNico Wulffraat, UMC UtrechtAnnelies Boonen, Maastricht UMCMarieke Voshaar, Patient representativeAngelique Weel, Maasstad Hospital
Zofia Das-Gupta (Project Leader), ICHOMBenjamin Ellis, Imperial College Healthcare NHS TrustAli Rivett, BSRMwidimi Ndosi, University of the West of England
Laure Gossec, PitieSalpetriere Hospital ParisDelphine Couvoisier, University of Geneva
Merav Lidar, Sheba Medical Center
Katy Ying Ying Leung, Singapore General HospitalJeffrey Chau, Patient representative
Willam Taylor, University of Otago
Girish Mody, University of KwaZulu-Natal, Durban
Sofia Ernestam, Karolinska UniversityChristina Opava, Karolinska University
Geraldo Pinheiro, Rio de Janeiro State UniversityEnrigue Soriano, Hospital Italiano de Buenos Aires
IA Working Group 12Copyright © 2017 by the International Consortium for Health Outcomes Measurement. All rights reserved.
Research & propose scope
Literature review of outcome domains and definitions
ICHOM Working group Inflammatory Arthritis
Nov 15th
6 -8 weeks
Patient focus groups
Validation of outcome domains (distribute survey via patient organisations)
Literature review of risk factor domains and definitions
Working Group
Process
Literature input
Patient input
Standard Set
Launch
Call 7Review &
transition to implementation
Call 6 Std. Set &
publication wrap-up
Call 5Case-mix domains
and definitions
Call 4Outcome measures
Call 3Outcome
definitions
Call 2Outcome domains
Call 1Outcome domains
Working Group
LaunchScope
March 21stJan 31st June 27th Aug 22nd Sept 26thMay 9th TBD
8 weeks 7 weeks 6 weeks 5 weeks
Open review period External
Input
IA Working Group 13Copyright © 2017 by the International Consortium for Health Outcomes Measurement. All rights reserved.
ICHOM Standard Set Inflammatory Arthritis Scope
IA Working Group 14Copyright © 2017 by the International Consortium for Health Outcomes Measurement. All rights reserved.
ICHOM Standard Set Inflammatory Arthritis Uitkomsten
IA Working Group 15Copyright © 2017 by the International Consortium for Health Outcomes Measurement. All rights reserved.
ICHOM Standard Set Inflammatory Arthritis Aanbevolen meetinstrumenten
IA Working Group 16Copyright © 2017 by the International Consortium for Health Outcomes Measurement. All rights reserved.
Vergelijken van uitkomsten gemeten met verschillende maten
16I
70
60
50
40
30
20
10
0
80
90
100
Co
mm
on
Sca
le
Ce
lciu
s
40
100
75
X
Co
mm
on
Sca
le
X
23.89
Ziekenhuis A Ziekenhuis B
Fah
ren
he
id90
80
70
60
50
30
20
IA Working Group 17Copyright © 2017 by the International Consortium for Health Outcomes Measurement. All rights reserved.
17I
70
60
50
40
30
20
10
0
80
90
100
Co
mm
on
Sca
le
HA
Q-D
I
80
70
60
50
90
100
2.50
2.00
1.50
1.00
3.00
0.50
75
45.94
Co
mm
on
Sca
le
80
70
60
50
90
100
45.98
0.25
Ziekenhuis A Ziekenhuis B
SF-3
6 P
hys
ical
fu
nct
ion
ing
Vergelijken van Fysiek Functioneren gemeten met verschillende questionnaires
I II III IV
Uitkomst I Uitkomst II Uitkomst III Uitkomst IV
Test 1 item Test 2 items Test 1 item Test 3 items
Test 3 items Test 4 items Test 2 items Test 5 items
Test 6 items Test 8 items Test 6 items
Test 12 items Test 36 items
Minimum set 7 items
Random set 17 items
IA Working Group 19Copyright © 2017 by the International Consortium for Health Outcomes Measurement. All rights reserved.
ICHOM Standard Set Inflammatory Arthritis Aanbevolen meetinstrumenten
IA Working Group 20Copyright © 2017 by the International Consortium for Health Outcomes Measurement. All rights reserved.
ICHOM Standard Set Inflammatory Arthritis Case-mix variabelen
Variable Definition and response options Timing Data Source
AGEYear of birthYYYY
Baseline Patient
SEX Sex at birthFemale/male
Baseline Patient
SMOKING STATUSNever / former / current Baseline Patient
COMORBIDITIES
Rheumatic Disease Comorbidity Index:Lung disease, myocardial infraction, other heart disease, stroke, hypertension, diabetes, fracture, depression, ulcer, other gastrointestinal cancer
Baseline and follow-up
Clinical
DIAGNOSISPhysician reported diagnosisRA / SpA/ PsA/JIA
Baseline and follow-up
Clinical
DISEASE DURATIONYear of diagnosisYYYY
Baseline Clinical
LEVEL OF EDUCATIONHighest attained educationISED classification (none / primary / secondary/tertiary)
Baseline Patient
IMMUNOLOGICAL Rheumatoid factor and ACPA - RA and JIA Baseline Clinical
ICHOM Standard Set of outcomes Inflammatory Arthritis
www.DREAMregistry.nl
www.ICHOM.org
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