Evidence-based practice II

1. Evidence-based practice II Dr Cath Jackson and Ian Grigor

2. Aims of session • To review contemporary Department of Health (DH) and National Institute for Health and Clinical Excellence (NICE) guidance on Measles/Mumps/Rubella (MMR) vaccination • To give an overview of MMR research activities in the School of Healthcare

3. The DH approach • An overview of the benefits of immunisation holistically http://www.immunisation.org.uk/ • Note that the above website carries the NHS logo • A “News” section carries evidence of recent research in the respective topics

4. The DH approach • From the NHS Immunisation information homepage, there is a link exclusive to MMR • e.g. “MMR in the news”

5. The DH approach • More importantly:- a resume of all the information for parents to make an informed decision about vaccinating their children against MMR

6. NICE guidelines • Offer Adobe Acrobat files that can be searched for MMR information • Why is this less user-friendly for the public?

7. As academics… You will, no doubt, want to hear about the latest, in-house research on MMR

8. Supporting informed decision-making in relation to the MMR vaccine Cath Jackson Francine M Cheater Innes Reid Contact c.j.jackson@leeds.ac.uk Tel. 0113-343-1576 School of Healthcare

9. Background • Department of Health funded • 4 years’ research • Phase 1: Interviews • Phase 2: Systematic review of literature • Phase 3: Exploratory trial

10. Top-down Approach Cognitive-deficit model • Assume that lack of knowledge is the problem • Health professional communicates information to parent • Ignores the influence of own experiences • Conforming with ‘expert’ opinion • Informed consent

11. Bottom-up Approach Engagement model • Acknowledges importance of knowledge and trust in the information source • Making sense of information in context of own experiences • 2-way communication process • Facilitating an informed decision

12. Informed Decision • Several definitions 1, 2 • Based on relevant information • Consistent with the decision maker’s values

13. Research Question • What is the most effective approach to support informed parental decision-making in relation to the MMR vaccine? • Interviews • Systematic review • Intervention to be tested in an exploratory trial

14. Interviews: Methods Aim: To explore parents’ accounts of decision-making relating to the MMR vaccine controversy, identifying uptake, determinants and education needs. • 69 interviews with parents • 12 interviews with health professionals • Tape recorded, fully transcribed • Framework approach for analysis3

15. Interviews: Results • 62% parents did not feel that they had made an informed decision • Parents and health professionals identified a need for new ways to support informed decision-making

16. Review Questions • What are the decision support needs of parents attempting to make an informed decision about their child’s health? • What are the decision support needs of adults attempting to make an informed health decision for which there is controversy? • How effective and appropriate are existing decision support interventions in these contexts?

17. Review Methods 1: Search Strategy • Major databases: Medline (1996-), EMBASE (1980-), CINAHL (1982-), PsycINFO (1967-), ASSIA (1987-) • Specialist databases: Bibliomap, HealthPromis, Cochrane Library • Reference lists from key primary and review articles

18. Review Methods 2:Inclusion Criteria Decision Support Needs Papers Types of participants • Parents/guardians/carers making a health decision for a child • Adults making a controversial health decision for themselves or someone else Types of decisions • Parent decisions: treatment, immunisation, pre-natal screening / testing and related reproductive decisions, lifestyle / behaviour change, palliative care and stopping active treatment • Controversial decisions: HRT, MMR, pertussis vaccine, PSA, antibiotics for otitis media • Excluded hypothetical decisions Types of studies • Studies of all designs (quantitative and qualitative), published in English • Opinion papers excluded

19. Review Methods 3:Inclusion Criteria Decision Support Intervention Papers • Same types of participants and decisions Types of studies • All designs that describe and / or evaluate and / or discuss a decision support intervention. • Published in English • Effectiveness evaluations: Studies included a control or comparison group. • Appropriateness evaluations: Studies reported a ‘formal’ evaluation

20. Review Methods 4: Data extraction and synthesis • 3 reviewers independently • extracted data • quality assessed the studies • synthesised the data

21. Review: Results 1 12123 papers identified including overlap 2494 papers after title screen 575 papers after abstract screen 259 papers included 3 papers not obtainable 313 papers excluded 205 papers Decision Support Needs 54 papers Decision Support Interventions

22. Review: Results 2 Decision Support Needs 3 key areas emerged • Information • Peer support and networks • Feeling in control over making the decision • Consistent across method and type of decision

23. Review: Results 3 Decision Support Interventions • Most use decision aids • Most (decision aid, educational, empowerment) show some improvement in some outcomes compared to usual care • Many do not change decision-making outcomes • Some reduce uptake of the treatment / screening etc. • Guidance re: how to present info but no consensus re: delivery

24. Review: Discussion • Broad range of studies across health decisions • Less than 30% studies focused on informed decision-making • Decision support needs consistent across parental and controversial health decisions • More than just information needs • No interventions to promote informed decision-making for MMR • Issue of ‘persuasion’ and gaining informed consent not informed decision-making for MMR

25. Trial: Methods 1 Aim: To conduct a cluster randomised controlled exploratory trial to compare usual care in general practice with a parent forum plus usual care in relation to MMR parental decision-making • 140 parents of children eligible for MMR vaccine • 70 in the control group - MMR leaflet (usual care) • 70 in the intervention group – MMR leaflet and a 2 hours parent forum

26. Trial: Methods 2 • Forum co-led by a parent and a researcher • Incorporates • Information • Parent support / network • Question prompt card and coaching • Collected data on informed decision-making, attitudes, knowledge, vaccine uptake • Postal questionnaire at baseline, 1 week-post intervention and 3 months post-intervention

27. Conclusions • Range of research methods applied to a ‘real life’ health issue • Dissemination • DOH • PCTs and primary care health professionals • Academics • Parents

28. References • Bekker, H. et al. (1999). Informed decision making: an annotated bibiography and systematic review. Health Technology Assessment, 3, 1. • O’Connor, A. et al., (2003, 2006). Decision aids for people facing health treatment or screening decisions. The Cochrane Database of Systematic Reviews, Issue 1. • Ritchie J. & Spencer E. (1994). Qualitative data analysis for applied policy research. In A. Bryman & A. Burgess (Eds.), Analysing Qualitative Data. Routledge: London, UK. • McMurray, R.; Cheater, F.M. et al. (2003). Managing controversy through consultation: a qualitative study of communication and trust around MMR vaccination decisions. British Journal of General Practice, 54, 520-525.