1. Implementing PROMIS in quality Registries
John Chaplin
Institute for Clinical Sciences,
Sahlgrenska Academy at Gothenburg University, Sweden

2. Quality Registries in Sweden
Mostly initiated by health professionals.
107 Quality Registries (QRs) administered by regional competence centres.
QRs contain individualised data on:
patient demographics
medical interventions
structure and process of care (incl. PREM)
outcomes after treatment (incl. PROM)
PURPOSE
to collect individual-based clinical data to examine and improve the delivery of healthcare. Recorded data are used for quality improvement, monitoring of adherence to guidelines and research
any person can apply for data from a QR for research purposes provided the research project is approved by an ethics review board

3. There are 107 Swedish Healthcare Quality Registries (QR)
The first Swedish QR, started in In the past two decades, an increasing number of nationwide QRs focusing on specific disorders have emerged.
even if other groups of health professionals (e.g. registered nurses, psychologists and physiotherapists) are usually represented
107 Registries, Apr 2016

4. QRs in different healthcare categories

5. In total 90 % use some kind of PROM
Some use the same PROM – EQ5D is used by 35 registries / SF36 by 10 registries.

6. What are the pressures for further PROM development?
Push from
Swedish Association of Local Authorities and Regions – funding is tied to the collection of PROM data.
Difficulty with licence agreements with other systems.
Need to maintain low costs while maintaining quality.
Pull from
Increased awareness, availability and use of PROM measures in Swedish.
Awareness of need for electronic presentation of questions and collection of data (eHealth).

7. A series of studies have been conducted
Conclusions
The future belongs to item banking.
Due to long development time it is wise to start from an existing item bank system.
PROMIS is today the most interesting option for a national measure in Sweden.
the comprehensive collection of dimensions –
the possibility of integrating disease-specific Item banks into a common system.

8. Swedish national item bank project - 2016
Aim
To encourage / stimulate the Quality Registries to adopt PROMIS.
Project management: Evalill Nilsson, QRC Stockholm (project leader) John Chaplin, Gothenburg University
Steering group: Staffan Lindblad (QRC Stockholm), Jack Lysholm (RCN), Anders Tennlind (RCSO), Thomas Troëng (RC Syd), Ulrika Frithiofsson (RC VGR) and Monica Sterner (UCR); representing each of the six Swedish RCs (Registry Centers)

9. Strategy for implementation
Initial phase aims to have the first item bank and CAT by the end of
Translation and validation of PROMIS item banks likely to be useful to the largest number of QRs.
Develop a Swedish CAT demo.
Workshops and seminars to inform and identify potential future users and stakeholders.
Establishment of a Swedish network of active users and researchers working with item banks.
Outline a secure national data collection methodology.
Establishment/participation in European/Nordic PROMIS cooperation.

10. Results
Translation of PROMIS paediatric and adult item banks, profiles and short forms.
Support of independent translation projects incl. Paediatric profile-25 and NeuroQoL item banks.
Established contact with a range of stakeholders and experts.

11. Results Cognitive debriefing carried out and protocols established.
Ongoing validation studies and others planned.
Pilot methodology for CAT identified

12. Swedish translations Fatigue + cancer version
Adult
Patient group
Research group
PROMIS
Fatigue + cancer version
Emotional depression + cancer
Swedish national Item bank project
Pain – Interference/ intensity + cancer
Physical Function - Adult & Child
Ability to Participate in Social Roles and Activities
Global Helath-10 / Pediatric Global Health
NeuroQoL
Fatigue
Multiple sclerosis
Dept of Clinical Neuroscience, Karolinska Institute
Cognition general concerns
Ability in social roles and activities - SF
Participation in social roles and activities - SF
Lower extremity function -SF
Upper extremity function -SF
Positive affect and well-being -SF

13. PROMIS in Sweden– Sept 2016 ADULT PROMIS Swedish translations
Swedish translations
Patient group
Research group
ADULT
Fatigue short form-7
post-polio
Department of Rehabilitation Medicine, Skåne University Hospital in Lund
Sexual function
cancer patients & gen. population yrs
Dept. Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm
PROMIS-29 profile
Systemic sclerosis
Department of Clinical Sciences, Dept of Rheumatology,
Lund University
PROMIS
Swedish translations
Patient group
Research group
PEDIATRIC
Emotional distress- Anxiety + proxy
Asthma
Center for Health Care Sciences
Örebro University Hospital, Örebro
Emotional distress – Depression + proxy
Peer Relationships + proxy
Fatigue + proxy
Pediatric Profile-25
Orthopaedic Musculoskeletal
Swedish paediatric orthopaedic register (SPOQ)

14. Ongoing validation studies
PROMIS-25
Paediatric Orthopaedic Quality Registry (SPOQ) patients from Gothenburg
Paediatric Diabetes Clinics Gothenburg & Stockholm n=100
Paediatric item banks
Asthma patients 8-16 years and parents (n=389) treated at Örebro University Hospital, June Sept. 2016
NeuroQoL –
MS Registry (SMSreg) patients (potentially c )

15. Future organisation of PROMIS in Sweden
technical management
knowledge management
administrative support

16. The technical solution

17. Conclusion
In order to achieve a self-sustaining movement towards the adoption of item banking in Sweden, it is necessary to:
involve multiple stakeholders at different levels in the early formulation of the approach, in order to build a sense of ownership.

18. Item bank project European/Nordic group meeting - Monday 16.00
Project management: Evalill Nilsson, QRC Stockholm (project leader) John Chaplin, Gothenburg University   Steering group: Staffan Lindblad (QRC Stockholm), Jack Lysholm (RCN), Anders Tennlind (RCSO), Thomas Troëng (RC Syd), Ulrika Frithiofsson (RC VGR) and Monica Sterner (UCR); representing each of the six Swedish RCs (Registry Centers)
European/Nordic group meeting - Monday 16.00