IMPLEMENTING PROMIS IN QUALITY REGISTRIES JOHN CHAPLIN Institute

IMPLEMENTING PROMIS IN QUALITY REGISTRIES JOHN CHAPLIN Institute for Clinical Sciences, Sahlgrenska Academy at Gothenburg University, Sweden

Quality Registries in Sweden • Mostly initiated by health professionals. • 107 Quality Registries (QRs) administered by 6 regional competence centres. • QRs contain individualised data on: § patient demographics § medical interventions § structure and process of care (incl. PREM) § outcomes after treatment (incl. PROM)

There are 107 Swedish Healthcare Quality Registries (QR) • The first Swedish QR, started in 1975. In the past two decades, an increasing number of nationwide QRs focusing on specific disorders have emerged. 107 Registries, Apr 2016

QRs in different healthcare categories

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 (e. Health).

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.

Swedish national item bank project - 2016 Aim • To encourage / stimulate the Quality Registries to adopt PROMIS. Project management: Evalill Nilsson, QRC Stockholm evalill. nilsson@ki. se (project leader) John Chaplin, Gothenburg University john. chaplin@gu. se 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)

Strategy for implementation Initial phase aims to have the first item bank and CAT by the end of 2016. v Translation and validation of PROMIS item banks likely to be useful to the largest number of QRs. v Develop a Swedish CAT demo. v Workshops and seminars to inform and identify potential future users and stakeholders. v Establishment of a Swedish network of active users and researchers working with item banks. v Outline a secure national data collection methodology. v Establishment/participation in European/Nordic PROMIS cooperation.

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

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

Adult PROMIS Swedish translations Patient group Fatigue + cancer version Emotional depression + cancer Pain – Interference/ intensity + cancer Research group Swedish national Item bank project Physical Function - Adult & Child Ability to Participate in Social Roles and Activities Global Helath-10 / Pediatric Global Health Neuro. Qo. L Fatigue 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 Multiple sclerosis Dept of Clinical Neuroscience, Karolinska Institute

PROMIS in Sweden– Sept 2016 PROMIS Swedish translations ADULT Fatigue short form-7 Sexual function PROMIS-29 profile PROMIS Swedish translations Patient group post-polio Research group Department of Rehabilitation Medicine, Skåne University Hospital in Lund cancer patients & gen. population 16 -39 yrs Dept. Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm Systemic sclerosis Department of Clinical Sciences, Dept of Rheumatology, Lund University Patient group Research group PEDIATRIC Emotional distress- Anxiety + proxy Emotional distress – Depression + proxy Peer Relationships + proxy Fatigue + proxy Pediatric Profile-25 Asthma Center for Health Care Sciences Örebro University Hospital, Örebro Orthopaedic Musculoskeletal Swedish paediatric orthopaedic register (SPOQ)

Ongoing validation studies • PROMIS-25 • Paediatric Orthopaedic Quality Registry (SPOQ) 100 -150 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 2015 - Sept. 2016 • Neuro. Qo. L – • MS Registry (SMSreg) 100 -250 patients (potentially c. 14 500)

Future organisation of PROMIS in Sweden q technical management q knowledge management q administrative support

The technical solution

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.

ITEM BANK PROJECT Project management: Evalill Nilsson, QRC Stockholm evalill. nilsson@ki. se (project leader) John Chaplin, Gothenburg University john. chaplin@gu. se 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