Outcome monitoring Empowerment of clients and their local and national representatives Chris Nas Senior policy advisor WHO Collaborating.

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1 Outcome monitoring Empowerment of clients and their local and national representatives Chris Nas Senior policy advisor cnas@ggznederland.nl WHO Collaborating Centre for Research and Training Lille, January 31 th 2014

2 About GGZ Nederland Dutch Association of Mental Health and Addiction Care Chris Nas –Between 2009 – 2011 leading the nationwide programme for ROM in Mental Health (joint programme of client organisations, professional associations and service providers) works for GGZ Nederland –Sector organisation in the Netherlands for mental healthcare. –With more than 100 member organisations –Providing 95% of specialist mental healthcare in the Netherlands –To 815,800 unique clients (children and adults) –Services are prevention, addiction care, outpatient care, acute clinical care, sheltered housing/assisted living, forensic care. –For which they employ 89,500 staff –Turnover € 5.4 billion (10.6 % of Dutch healthcare expenditure) 2 GGZ Nederland (2013), GGZ in de Zorgverzekeringswet

3 3 When you leave this room, I hope you will take this home with you Outcome monitoring empowers clients and their representatives, because it facilitates: shared decision making in treatment on the level of clients and professionals; professional reflection on the level of teams, departments and/or providers; transparency on relevance and effectiveness of treatments and guidelines; transparency on effectiveness of mental health care organisations.

4 4 Outcome measurement is primarily an aid for clients and mental health workers Clients fill in questionnaires at the beginning, during and end of treatment or support. Measuring: reduction of symptoms functioning in daily life quality of life

5 Quality of Life questionnaire (QoL+) Could you please tell how satisfied you are with ….. 1)…. your housing situation?1 2 3 4 5 6 7 2)…. your relations with people?1 2 3 4 5 6 7 3)…. your physical health? 1 2 3 4 5 6 7 4)…. your mental health? 1 2 3 4 5 6 7 5)…. your financial situation? 1 2 3 4 5 6 7 6)…. your work? 1 2 3 4 5 6 7 7)…. your life in general? 1 2 3 4 5 6 7 8)…. the support you receive? 1 2 3 4 5 6 7

6 6 What does this QoL+ scores tell us about the quality of life of a person? 56 8

7 7 What does 2 nd QoL+ base line say about recovery of a person? 56 8

8 8 Outcome measurement provides a base for shared decision making 56 8

9 9 Collecting and analysing outcome data is possible and meaningful … Clinical recovery (according to RCI) ABCD % Recovered31%39%23%28% % Reliable improved11%13%19%21% % No change55%43%50%43% % Reliable aggravated4%6%9%8% Results of pilot in 2011 of 4 mental health services providers in long term mental health care on the basis of HONOS questionnaires. Not corrected or standardised for case mix. RCI = Reliable Change Index (RCI).

10 10 … as shown by this comparison of the aggregated outcomes. Clinical recovery (according to RCI) ABCD % Recovered31%39%23%28% % Reliable improved11%13%19%21% % No change55%43%50%43% % Reliable aggravated4%6%9%8% Results of pilot in 2011 of 4 mental health services providers in long term mental health care on the basis of HONOS questionnaires. Not corrected or standardised for case mix. RCI = Reliable Change Index (RCI).

11 11 Internal benchmark of mental health provider in child and youth psychiatry

12 12 What is the use of expensive family help for families with children between 0 - 5?

13 13 Accumulation of outcome data are opportunity to discuss performance National Benchmark Institute collects anonymous outcome data nationwide. LPGGZ (national client platform) is board member and therefore in the position to influence criteria performance assessment. Local client organisations are able to assess the performance of their service provider and discuss results with board of directors.

14 14 In the nationwide project ROM MH, clients participated in various ways Full member Steering Committee Co-author of statement “Vision on Outcome Monitoring in Mental Health” Initiating projects: –Meetings with client and family councils –Client expert groups on ROM –8 short movies for clients, family and client councils about questionnaires –Critical appraisal of existing questionnaires

15 15 Meetings with client and family councils with over 100 participants What is ROM exactly? Who makes these questionnaries? Who uses the outcomes? What is in it for us? How do we get the case worker to discuss my personal outcomes? 15

16 16 Eight short movies on ROM (in Dutch without subtitles): http://www.youtube.com/user/ROMindeggz?feature=watch

17 17 Room for improvement: develop questionnaires with peer experts Checklist ROM-instrumentarium voor de doelgroep Kinderen & Jeugd InstrumentKwaliteitMeetpretentieInspanning cliëntInspanning behandelaarNormeringKosten ASEBA (CBCL voor ouders/fam, TRF voor leerkrachten, YSR voor jeugdigen) 120 + 20 items Goed Ernst van de problematiek CBCL: 15-20 minuten, beoordelingslijst ouders TRF: 15-20 minuten, beoordelingslijst leerkracht YSR: 10-20 minuten, zelfinvullijst kind Waardering gebruik: onbekend Scoring & intepretatie: plm. 10 minuten Terugkoppeling aan cliënt: ‘betrekkelijk snel en efficiënt’ Geen specifieke training nodig. Algemeen: kennis over gestandaardiseerde diagnostische onderzoeksmethoden en opleiding gericht op werken met ouders en kinderen Ja€ 7,- per 10 stuks SDQ Diverse versies tbv leeftijd kind 25 items + schaal en 8 items Voldoende tot goed Ernst van de problematiek (met aan-vulling op dagelijks functioneren) Papier & potlood: 5 minuten, zelfinvullijst kind of observatielijst oudere/familie of leerkracht Waardering gebruik: onbekend Scoring & intepretatie: 15 minuten Terugkoppeling aan cliënt: onbekend Training: 1 uur vertrouwd raken met materiaal, instructies en handleiding. Geen herhaling noodzakelijk. Ja Paper & pencil: gratis downloaden; Online afname of digitalisering: € 0,15 per afname HoNOSCA 15 items Voldoende tot goed; Dagelijks functioneren Meest gebruikt als observatielijst – geen activiteit door cliënt Waardering gebruik: onbekend Afnameduur: 10 -15 minuten Terugkoppeling aan cliënt: onbekend Training: 1x training, 1x hertraining en daarna jaarlijkse supervisie bijeenkomsten NeeEngelse versie gratis te downloaden Questionnaires made by experts for research Appreciation clients was lacking completely Reduction of symptoms instead of recovery

18 18 Outcome monitoring: driver for client empowerment shared decision making in treatment on the level of clients and professionals; professional reflection on the level of teams, departments and/or providers; transparency on relevance and effectiveness of treatments and guidelines; transparency on effectiveness of mental health care organisations.