SQRP SWEDISH QUALITY REGISTRY FOR PAIN REHABILITATION Marcelo

SQRP SWEDISH QUALITY REGISTRY FOR PAIN REHABILITATION Marcelo Rivano Fischer, Ph. D Head of Dept. Rehabilitation Medicine, University Hospital President, Swedish Pain Society Chairman, Swedish Quality Registry for Pain Rehabilitation SQRP SWEDISH QUALITY REGISTRY FOR PAIN REHABILITATION

Organisation from 1 januari 2011 Chairman Marcelo Rivano Fischer, Head of Department, Psych Ph. D, Lund Coordinator Elisabeth Persson, Leg Arbetsterapeut MSc, Ph. D student, Lund Board Björn Gerdle, Professor, MD, Linköping Britt-Marie Stålnacke, Ass Prof, MD, Umeå Margareta Fridén, Occup T, Jönköping Marie-Louise Schult, Occup T, Ph. D, Stockholm Harriet Brännström, Phys T, Umeå Statistician/Coordinator to UCR Annelie Inghilesi Larsson, Pol. Mag Statistics, Umeå Center of excellence Uppsala Clinical Research Center UCR SQRP SWEDISH QUALITY REGISTRY FOR PAIN REHABILITATION

Goals: 1. Support member units in their quality improvement activities 2. Serve as base for developing evidence-based methods 3. Establish adequate comparisons with other units for improvement in national standards of pain rehabilitation NRS uses the ICF framework and groups its instruments into the categories of function, activity/participation, and personal factors NRS uses mainly patient related outcome measurement, PROM Several scientific works are produced from register data Since 2007 are results from the units open to public scrutiny SQRP SWEDISH QUALITY REGISTRY FOR PAIN REHABILITATION

Instruments in NRS Questionnaire, socio-demographic data, work, sick-leave, pain duration and attitudes towards the future. Numeric Rating Scale (skala 0 -10) (Turk m fl, 1993). The Hospital and Anxiety Depression Scale (HAD) (Zigmond & Snaith, 1983). Multidimensional Pain Inventory (MPI) (Kerns m fl. 1985; Rudy & Turk, 1987). SF- 36 Health Related Life Quality (Ware, 1992; Sullivan m fl. , 1998). EQ-5 D Experienced Health (the Euro. Qol Group) (Brooks R, 1996; van Agt m fl. , 1994) SQRP SWEDISH QUALITY REGISTRY FOR PAIN REHABILITATION

Patients referred to multimodal/interdisciplinary pain rehabilitation due to complex persisting pain (non-cancer, > 3 months) During 2010, twenty units delivered data 18 out of 20 Swedish provinces/regions are represented in NRS Most of Swedish rehabilitation units departments are NRS members Seven new units joined NRS during 2011 and two units left the register as they lost their local procurements. SQRP SWEDISH QUALITY REGISTRY FOR PAIN REHABILITATION

Data from 3651 patients entered 2010 at first contact (initial) 67% of referrals from GPs 1863 patients were offered pain rehab program after pain team screening Pain team screening only, for 1788 patients During 2010, 1394 patients completed their pain rehab programs Pain rehab patients were mainly women ( 74%), with average pain duration of 72 months and out of work for 22 months (median) Worst pain was described by patients going through pain rehab programs as varying in localisation (36%), followed by low back pain (19%) and by pain in the neck region (14%). SQRP SWEDISH QUALITY REGISTRY FOR PAIN REHABILITATION

One year follow up 2010, 842 patients out of 1272 that went through pain rehab programs 2009 answered their one year follow up forms It means that follow up coverage for patients in rehab 2009 was around 65%. Out of the 842 follow up patients, 189 had incomplete set of answers (admission, discharge, follow up) and therefore excluded from analyses. Attrition of patients answering at follow up is therefore 23% SQRP SWEDISH QUALITY REGISTRY FOR PAIN REHABILITATION

Average waiting time for patients undergoing pain team screening only during 2010 was 68 days (median) Fourteen out of 20 units make first contact with patients within the health care mandatory timeframe (less than 90 days) Seven units make first contact in less than 60 days Average waiting time for patients undergoing pain rehab programs during 2010 was 55 days (median) Fifteen out of 20 units initiate pain rehab within the health care mandatory timeframe (less than 90 days) Eight units in less than 60 days. SQRP SWEDISH QUALITY REGISTRY FOR PAIN REHABILITATION

SQRP SWEDISH QUALITY REGISTRY FOR PAIN REHABILITATION

Do you feel you were responded to in a respectful and considerate way? Were you satisfied with the unit’s equipment? How was the information you received about practical matters? Do you feel you were participating in the planning of your own rehabilitation? How did the rehab team worked together in your case? Did your relatives participate in your rehabilitation? Did the rehabilitation period change your pain experinces? Did the rehabilitation period change your ability to cope with your life situation? SQRP SWEDISH QUALITY REGISTRY FOR PAIN REHABILITATION

SQRP SWEDISH QUALITY REGISTRY FOR PAIN REHABILITATION

NRS självskattningsprofil Country of birth Level of education Age Days since pain Days with persisting pain onset Days with full absence from Importance of work How possible return to work When possible return to work Convinced about being restored Pain last week MPI: pain intensity (NRS) Pain Main pain spread MPI: affective localisation distress HAD: anxiety HAD: depression Vitality (SF-36) Physical function, PF (SF 36) MPI: activity index Role function, RP (SF-36) Social Function, SF (SFMPI: 36) Life disturbance MPI: Life control

Since 2010, improvements are defined, for all measures besides SF-36 and EQ-5 D, in terms of clinically meaningful improvements, that is, differences that had been found significant by research for the health of patients, rather than statistically significant positive differences. Patients improved in most measures: 40 -60% at discharge and 30 -70% at follow up. Variation in improvements between the units is large for some measures and quite small for others. Comparison between units demands an analysis about differences and similarities in the rehab programs offered at the different places. This analysis is planned to be published in next year rapport. Specific analyses show that age, pain intensity at admission, and ethnicity are related to improvements as captured by several instruments SQRP SWEDISH QUALITY REGISTRY FOR PAIN REHABILITATION

2010, number of patients by unit SQRP SWEDISH QUALITY REGISTRY FOR PAIN REHABILITATION

2010, number of days that patients are within the responsability of the unit, screening team SQRP SWEDISH QUALITY REGISTRY FOR PAIN REHABILITATION

2010, number of days that patients are within the responsability of the unit, pain rehab team SQRP SWEDISH QUALITY REGISTRY FOR PAIN REHABILITATION

2010, Pain onset, screening teams SQRP SWEDISH QUALITY REGISTRY FOR PAIN REHABILITATION

2010, Pain onset, pain rehab teams SQRP SWEDISH QUALITY REGISTRY FOR PAIN REHABILITATION

2010, patients born in Sweden, pain rehab teams SQRP SWEDISH QUALITY REGISTRY FOR PAIN REHABILITATION

Reduced pain, follow up SQRP SWEDISH QUALITY REGISTRY FOR PAIN REHABILITATION

Better ability to cope with life situation, follow up SQRP SWEDISH QUALITY REGISTRY FOR PAIN REHABILITATION

Improvement, all instruments, admission-follow up SQRP SWEDISH QUALITY REGISTRY FOR PAIN REHABILITATION

SQRP SWEDISH QUALITY REGISTRY FOR PAIN REHABILITATION

Persisting pain patients experience their health poorer than, for instance, spinal cord injured people They experience their pain as invisible and themselves under suspicion (pain in the head) They report being systematically de-legitimized They experience their encounters with health care and other authorities as frustrating and negative Research shows ways for improvement Registries help us to improve our strategies SQRP SWEDISH QUALITY REGISTRY FOR PAIN REHABILITATION

Disclosure Statement of Financial Interest I, Marcelo Rivano Fischer, DO NOT have a financial interest/arrangement or affiliation with one or more organizations that could be perceived as a real or apparent conflict of interest in the context of the subject of this presentation.