Outcome measures in dementia care research

Transcription

1 Versorgungsforschung für demenziell erkrankte Menschen Health Services Research for People with Dementia Symposium Bonn Dezember 2008 (World Conference Center Bonn) Plenary Lectures: PREVENTION AND PSYCHOSOCIAL INTERVENTIONS Outcome measures in dementia care research Abstract (taken from the Abstract Booklet): Establishing a strong evidence base for interventions in dementia care is dependent on the type and relevance of the outcomes measures that are used. Psychosocial interventions in dementia care are emerging, but the evidence for this remains thin. This may not be because the intervention is not robust, but because the primary outcome measure is inadequate. For example if a home care service is being evaluated a measure of subjective caregiver stress may be more appropriate than a measure of well being (Zarit et al. 1999). Poor harmonisation of outcome measures can also make it hard to compare studies and is therefore another obstacle that hampers the growth of a strong evidence base, particularly for psychosocial interventions in dementia. Finally when the evidence for an intervention has been demonstrated, measurement of the quality of implementation into every day practice becomes important. To bridge this gap between the emerging science and associated practice the INTERDEM (Timely INTERvention in DEMentia care across Europe) research group has reviewed, collated and disseminated for use into routine practice, the current evidence base for psychosocial interventions in early stage dementia across Europe (Moniz- Cook & Manthorpe, 2009), harmonised related clinical outcome measures for use in routine practice (Moniz-Cook et al. 2008) and has developed a set of process quality indicators to enhance implementation of evidence based psychosocial interventions into routine practice

2 In this paper I will first outline some of the difficulties in selecting a primary outcome measure in randomised controlled studies by using recent studies of psychosocial interventions and services in dementia care. Next I will summarise recent studies that harmonised outcome measures for clinical research and developed an evidence based set of quality indicators to enhance implementation of clinical research into routine practice. References: Moniz-Cook E, et al. (2008) A European consensus on outcome measures for psychosocial intervention research in dementia care. Aging & Mental Health 12,1, Moniz-Cook E & Manthorpe J Eds (2009) Early Psychosocial Interventions in Dementia: Evidence-based Practice. London, Jessica Kingsley. Richards K, et al. (2003) Early Intervention for people with dementia: What are important outcomes for families? Aging & Mental Health, 7, 1, Zarit SH, et al. (1999) Useful services for families: research findings and directions International Journal of Geriatric Psychiatry 14,3, INTERDEM Esme D. Moniz-Cook, Professor of Clinical Psychology and Ageing, University of Hull & Humber Mental Health Teaching NHS Trust, Hull HU3 2PG, UK E.D.Moniz-Cook@hull.ac.uk

3 Outcome Measures in Dementia Care research Dr Esme Moniz-Cook Professor of Clinical Psychology & Ageing Institute of Rehabilitation University of Hull, Hull-York Medical School Bonn November 2008

4 INTERDEM an applied research network website

5 Developing Evidence based Practice across Europe

6 Evaluating evidence: psychosocial intervention for challenging behaviour in dementia

7 Overview Selecting the primary outcome measure: methods and difficulties Harmonising outcome measures across related studies Research into practice: implementing research

8 Selecting primary outcome measures Best practice example Anti Dementia Drugs and Cognitive Stimulation Therapy [CST] Cognitive outcomes [ADAS - Cog; MMSE] Spector Woods Orrell et al (2003) British J of Psychiatry 183, Quality of life outcomes [QoL-AD] Woods et al (2006) Aging & Mental Health 10, 3, Cost effectiveness [health economic study] Knapp et al (2006) British J of Psychiatry 188,

9 State of the science across the dementia trajectory examples of difficult in outcome measurement Psychotherapy in Alzheimer s disease RCT Burns et al (2005) British J of Psychiatry 187, Family caregiver interventions Parker, Mills & Abbey (2008) International J Evidence Based Healthcare 6, Psychosocial support and anti psychotic drug review in care homes Fossey et al (2006) BMJ 332, (7544)

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11 A European consensus on outcome measures for psychosocial intervention research in dementia care Conceptual Evaluation 92 measures [refined within expert workshop 1 to 57] 10 domains [with domain leaders] INTERDEM Web based consultation 136 professionals; 5 carers, from 13 European Countries Refine list & literature search 9 domains [economic and costs excluded] Qualitative assessment: European Utility, Feasibility and Properties Validation exercise Expert based with reliability tests

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13 A European consensus on outcome measures for psychosocial intervention research in dementia care Patient mood; Patient QoL; Patient ADL/IALD; Patient Behaviour Family carer mood; Burden; QoL Staff carer morale Global Patient measures

14 A European consensus on outcome measures for psychosocial intervention research in dementia care

15 National Institute for Health Research NIHR and DENDRON Woods et al REMCARE - 8 center CRT couples group reminiscence therapy Orrell et al SHIELD one of a series of studies to extend Group Cognitive Stimulation [CST] into a maintenance CRT Moniz-Cook et al CHALLENGE DEMCARE Functional analysis web based treatment tool 2 CRTs inc. cost utility and consequence studies Care home and Family Care settings

16 Implementing research into practice Quality Indicators for psychosocial intervention Vernooij Dassen et al 2008 Review of reviews Data on guidelines for dementia care across Europe 104 from 5 EU countries Synthesis of Quality indicators: 15 process QIs 11 PwD; 3 informal carers; 1 formal carers Next step Pilot study in 3 different services to reflect one of 3 aspects of the dementia trajectory academic clinical service from Germany welcome!