Highlights Health Professionals

1. Highlights Health Professionals Christina Bode Department of Psychology, Health & Technology

2. Selection of the highlights is a balance of: Dominant theme’s High attendance Personal highlights (I am psychologist, researcher & teacher)

3. Quality of studies/presentations: Good balance of qualitative and quantitative research Systematic reviews with clear description of the quality of included studies and the validity of the conclusions Thorough summaries of the literature Effectiveness studies with different designs Cross sectional studies on associations Sharing of lived experiences => Adequate interpretations of the results according to the design of the study, used methods and quality of data => improve acceptability of your conclusions

4. Topics Professional roles and multidisciplinary team care Interventions Patient reported outcome measures (PROs) Suggestion

5. Professional roles and multidisciplinary team care ..what’s going on with European collaboration… EULAR nursing task force: recommendations of role of nurses (van Eijk-Hustings) European survey on extended roles of health professionals (mainly nurses) (Hill) STAR-ETIC: Study of Arthritis Team rehabilitation, a cooperation between Sweden, Norway, Denmark and the Netherlands

6. Professional roles and multidisciplinary team care Models (van den Ende) • Models of care are very different in European countries • Shift from provider centred care to patient centred care • Not all patient have the same needs thus a shift to tailored interventions is necessary, patient empowerment will get more attention • Thinking in longer time perspectives: continuity of care must be guaranteed, monitoring changes over time and communication between health care providers • Medical treatments gets more complex and patients are better informed, better prepared and have higher expectations regarding patient education and coaching (Welin Henriksson)

7. Professional roles and multidisciplinary team care Expectations Benefits of extended tasks are expected for Patients: better (quicker) access and improved communication, satisfaction with care Health professionals: using their potential and knowledge more effectively, job satisfaction and career development Health Care system: timely service, continuity of care, possibly cost containment in the long run (Prodinger) Precondition: Adequate basic education and regular extra training and refresher courses for HPs

8. Professional roles and multidisciplinary team care Experiences Belgium model of a nurse specialist role: training in different domains from patho-physiology to communication and counselling (Esselens) How to capture (measure) the activities and contributions of specialised nurses: The SNAP: Specialist nurse activity profile, (content validity and reliability studied) (Ryan) Evidence ? => The start is made, future research have to demonstrate whether the high expectations of extended roles for health professionals for patients, professionals and the health care system can be fulfilled.

9. Professional roles and multidisciplinary team care Experiences and Evidence Study of Arthritis Team rehabilitation: STAR-ETIC, a cooperation between Sweden, Norway, Denmark and the Netherlands Outcomes: Patients with worse disease improved the most in HRQoL after multidisciplinary team rehabilitation (Bremander) The Star-Etic framework checklist is appropriate to describe the content of complex interventions and can be used for clinical and research reports (Grotle) The number of goals set in arthritis rehabilitation varied clearly between the participating countries. Most of the goals were set with regard to movement related functions. (Vliet Vlieland)

10. Interventions Model for the development of interventions (also useful for reporting interventions) (Taal)

11. Implementation (Osborne) system approach: patient, provider and system

12. Interventions • Web based tool for JIA parents • Good example for systematic developing a tool: • Needs assessment, prototype testing, evaluation by thinking aloud, evaluation study • Appealing with quiz and video • (Buerkle)

13. Interventions Brief training for self-monitoring of MTX • Patients were keen to be involved • After 3rd assessment 100% of the decisions were correct, nearly 100% correct responses whether an appointment should be made • Everyone felt confident about the decision unless he/she made mistakes in the evaluation (James)

14. Interventions Management of hand OA in older adults • comparing joint protection education and hand exercises • no effects for hand exercises • joint protection education effective 6 months follow up for hand pain and disability, and effective to improve pain self-efficacy at each measurement point (Dziedzic)

15. Interventions Acceptance-oriented psychological intervention for highly distressed patients with rheumatic disease • proof of the concept study with 25 patients • 20 treatment sessions • For 3 out of 4 patients psychological distress decreased below clinical levels • Acceptance of disease increased (Vriezekolk)

16. Interventions Tai Chi for people with rheumatic diseases • Traditional Chinese daily exercise with slow and gentle movements combined with mental focus, popular in the elderly, beside other results, effective in reduction of falls (Uhlig) • Cochrane review: Beneficial effects on physical and psychological functioning, recommend as safe (Niedermann)

17. Physical activity in health promotion and rehabilitation • Arthritis Care in Northern Ireland built a network to offer appropriate physical activities combined with fun and social interaction to their members, well received, participants enjoyed especially the social interaction (Fleck) • Another plea for FUN while exercising: integration of WiiFit and Wii balance board in rehabilitation and maintenance of exercises in daily life post rehabilitation (Tal-Akabi)

18. Patient reported outcome measures (PROs) • More questions than answers • Instruments are validated and have norm standards on the group level but do they also properly cover individual experiences and measure individual change? (Opava) • How to cover individual preferences? From the individual perspective, some items should actually have a higher weight in the sumscore. • Specific indices exist but the interpretation of the numeric scores on the individual and the group level is still unclear (Jolles-Haeberli) • Possible solutions: ?? Different PROs in clinical practice and research???? ?? Short forms for clinical practice and long forms for research??? ?? Other measurement technologies: computer adaptive testing??

19. Patient reported outcome measures (PROs) • More questions than answers • Instruments are validated and have norm standards on the group level but do they also properly cover individual experiences and measure individual change? • How to cover individual preferences? From the individual perspective, some items should have a higher weight in the sumscore. • Specific indices exist but the interpretation of the numeric scores on the individual and the group level is still unclear • Possible solutions: ?? Different PROs in clinical practice and research???? ?? Short forms for clinical practice and long forms for research??? ?? Other measurement technologies: computer adaptive testing?? SIMILAR QUESTIONS WERE DISCUSSED IN THE CLINICAL SESSION ON PROs YESTERDAY: TOPIC FOR A JOINT SESSION?

20. Patient reported outcome measures (PROs) Influence of literacy and language on the use of PROs (Oesch) • Selectivity in studies because of drop out of patients who did not understand the questions (low literacy in mother tongue, countries with different official languages or migration background) • Estimate 15%-20% prevalence of low literacy in RA patients • Initiative for migrant friendly hospitals • Working with translators during consultations • Use of picture based instruments • Use of reading age as proxi (material should have no higher levels than reading age = 7 years)

21. Some final remarks • Some talks refereed to demographic changes, ageing societies and ageing patient populations on a general level • It might be an idea to include a life span perspective more directly in the analyses and in the understanding of the phenomena we are studying, chronological age and living circumstances not only for the description of the sample Example from the work session: • How to extend the working life with special attention for the work restrictions that increased with age and how to tackle environmental barriers which effect individual functioning (Wilkie)

22. Some final remarks • Studies on use and effectiveness of care in different age groups • In depth interviews on the experience of fatigue in RA: coping strategies seem to differ between age groups, perhaps because of their coping competencies but also simply because the older patients have more flexibility to take a short break whenever they want during the day => patient education can be tailored • In the evaluation of a self-management intervention we found that patients in young and middle adulthood did not appreciate to follow the course together with patients in older ages because the living circumstances were not comparable. They would have liked to have more peers in the groups to exchange experiences on similar problems with daily life.

23. Thank you very much for your attention!