Quality improvement in Cystic Fibrosis

Transcription

1 Quality improvement in Cystic Fibrosis The importance of a coherent conceptual framework Dr Martin Wildman Senior Lecturer In Health Services Research ScHARR University of Sheffield

2 Low BMI Low FEV1

3 Modern CF treatment works Woe to the child which when kissed on the forehead tastes salty. He is bewitched and soon must die Median age at death 2 years 2014 Median age at death 27

4 High cost drugs: high value benefits CF treatment prevents exacerbations Staying well means preventing exacerbations Drugs prevent exacerbations when taken regularly Typical patient: 14K nebulised drugs per year In CF adherence is a metric that matters

5 PDSA measuring the metrics that matter Identifying metrics that matter is central to QI

6 Adherence: The invisible metric that matters in CF care 80% 60% 55% 36% physio Chipped nebuliser Self-report Daniels Chest 2011 MDT estimates Objective measure

7 Medicine possession ratio a pragmatic response to the invisibility of adherence MPR= medicines collected/ medicines prescribed Tobi 6 courses per year prescribed/3 courses collected MPR=50%

8 Drug-specific and composite MPRs Medication Posses ssition Ratio (MPR) n=2081 n=1848 n=785 n=65 n=166 n=1223 n= Azithromycin Dornase Alfa Hypertonic Saline Inhaled Aztreonam Inhaled Colistin Inhaled Tobramycin Composite MPR Notes: The bottom, middle and top of each box represents the lower quartile, median value and upper quartile, respectively. The ends of the whiskers represent the minimum and maximum of the data. A. Quittner

9 Adherence matters $60,000 Adjusted cost difference (95% CI): $14,211 ($5,557,$24,371); p<0.001* MPR<50% 37K rescue MPR>80% 20K rescue Unadjusted mean cos sts (2011 USD) $50,000 $40,000 $30,000 $20,000 $10,000 $16,211 $516 $37,464 Adjusted cost difference (95% CI): $8,493 (-$1,691,$19,709); p=0.096 $14,166 $306 $30,767 Reference category $13,570 $238 $20,625 OP costs ER costs IP costs $0 Low cmpr (<50%), N=1675 Moderate cmpr ( 50% and <80%), N=949 High cmpr ( 80% and 100%), N=663

10 Systems: only as strong as the weakest link Median adherence to nebulised therapy 36% Tobi 7 K per annum Aztreonam 12K per annum

11 Meet Hope

12 An everyday story of a young woman with Cystic Fibrosis Age 16 Age 17 Age 18 Age 19 Age 20 Age 21 FEV 1 106% FEV 1 96% FEV 1 76% FEV 1 72% FEV 1 66% FEV 1 24% 0 days IV 42 days IV 56 days IV 56 days IV 70 days IV 92 days IV antibiotic antibiotic antibiotic antibiotic antibiotic antibiotic

13 Burning platform QI needs an impetus to change Hope convinced us: We needed to make adherence visible We needed to learn how to support Hope to take her treatment

14 If you can t measure it you can t manage it making the invisible visible

15 Cfhealthhub : single UK self-management portal

16 PDSA embed data capture in routine clinical practice

17 If you can t measure it you can t manage it Invisibility and the lamp post syndrome Clinic visit Measure FEV1 BMI FEV1 and BMI low Add expensive drug Do another test

18 PDSA to improve adherence we need to change behaviour What should we plan and do to support adherence

19 Humans and behaviour change 80% of all New Year s resolutions fail 60% of gym memberships begun in January are unused Humans find change difficult

20 Being human we all know a lot about behaviour change Are you a healthy weight? Do you eat 5 portions of fruit or vegetables a day? Do you do 30 minutes exercise 5 days per week?

21 Behaviour change models Numerous Complex Incomprehensible

22 MRC complex interventions framework Susan Michie Quality improvement is a complex intervention 19 behaviour change models: Single comprehensive framework Coherent conceptual framework: Rosetta stone

23 US Justice system Capability Opportunity Motivation

24 COM-B A generic model of behaviour change Behaviour Motivation Capability Opportunity

25 From generic to specific: Adherence models Intentional non-adherence: Won t Non-intentional non-adherence: Can t

26 Won t necessity and concerns Necessity: I m pretty well at the moment Concerns : I might get used to it

27 CAN T capability and opportunity 26 yr old CF dancer FEV 1 110% 2 children back to work FEV 1 65% Diagnosis: no time for treatment Intervention with employers 30 mins am and pm to do nebuliser and physio FEV 1 100% despite 2 children CF and job!

28 COM-B Horne s adherence specific model maps to COM-B Necessities Concerns Behaviour Motivation Capability Opportunity Can t

29 Behaviour change isn t about them Are you a healthy weight? Do you eat 5 portions of fruit or vegetables a day? Do you do 30 minutes exercise 5 days per week?

30 Exercise: what really happens I don t smoke & I m not that overweight Behaviour Motivation People die in marathon every year Capability Opportunity If I go to the gym I m late for after school club Can t I can t swim

31 QI is behaviour change if QI isn t working we need to understand why Behaviour Motivation Capability Opportunity Can t

32 Depicted study: conceptual framework as Rosetta stone HTA funded 26 centre cluster RCT Adherence intervention Motivational interviewing intervention in adolescent Type I diabetes HBA1c unchanged Self-efficacy fell

33 Depicted: intention behaviour gap conceptual framework enables diagnosis MI big investment in motivation Behaviour Motivation Capability Opportunity Can t

34 We want to but we can t the intention-behaviour gap Sheeran (2002) Intentions and behaviour only moderately correlated r = 0.53 r 2 = 0.28 There is an intention behaviour gap

35 Intention behaviour gap pushing motivation alone brings diminishing returns MI big investment in motivation Behaviour Motivation Capability Opportunity Can t

36 Depicted study: failure undermines the will to change Self-efficacy is an important fuel for motivation Change fatigue is common Motivation is a precious resource

37 Habits Habits are automatic behaviours Automatic behaviours don t require effort Habits typically context dependent Once established habits are free

38 Willpower Willpower is like muscle strength it gets used up Using will power to sustain change depletes quality across the system QI teams need to become expert coaches in building habits Self-regulation is expensive

39 Habit formation: conceptual framework Relapse Habit (motivation automatic) Necessities Concerns Habit formation Won t Can t Repetition Motivation (reflective) Initiation attempts Capability Opportunity

40 IMPS portable habits If I see a lift I will look for the stairs

41 Behaviour change: conceptual framework Relapse Habit (motivation automatic) Self Regulation Necessities Concerns Habit formation Won t Can t Repetition Repetition Motivation (reflective) Initiation attempts Capability Opportunity

42 PDSA, relapse & the learning mindset

43 Relapse: provides feedback Relapse Habit (motivation automatic) Necessities Concerns Habit formation Won t Can t Repetition Motivation (reflective) Initiation attempts Capability Opportunity

44 Law of unintended consequences Rubber windmill day behavioural simulation prior to major reform package of incentives & organisational structures 40 participants GPs, hospital managers, senior Hospital consultants Individuals played to win within incentive landscape Outcomes not those predicted: players used rules to maximise self-interest

45 Rubber windmill Reframe: expect the unexpected Unintended consequences

46 All facts are friends: feedback the essential ingredient for improvement Feedback

47 System behaviour charts allow habit formation to be studied

48 Adherence is like an allotment

49 Aggregation of marginal gains: Team GB Pillows Mattresses Wind tunnels 4cm from black line

50 The way forward for team CF Chipped devices Embedded data capture Uniform data display Single UK portal A learning community moving from rescue to prevention

51 QI: insights from behaviour change Understand the behavioural drivers Measure the metrics that matter Capture data and feedback Most change failure is behavioural Relapse often due to lack of embedded feedback

52 The END: feedback welcome Relapse Habit (motivation automatic) Necessities Concerns Habit formation Won t Can t Repetition Motivation (reflective) Initiation attempts Capability Opportunity martin.wildman@sth.nhs.uk