Advance Care Plans for children and young people with life-threatening and life-limiting conditions: Developing an evidence based strategy for improvement - Dr Karen Shaw (Theme 1 – Maternity & Child Health) - Programme Steering Committee meeting on 12th March 2015

1.  Our vision
 Your help
ADVANCED CARE PLANS
(and difficult conversations)
in a paediatric NHS Trust
Dr Karen L Shaw
k.l.shaw@bham.ac.uk

2. OVERVIEW
1. Interventions
2. Challenges
3. Our approach
4. Progress and next steps

3. Advance Care Plan (ACP) Magnolia House
INTERVENTIONS
• Family held document
• Developed in 2011
• Rapid uptake at BCH
• New facility for ‘difficult conversations’
• Completion due in November 2015
• Part of BCH, but physically separate

4. 1. Central to BCH improvement strategy
2. Designed to improve quality of care through:
 Effective communication between staff and families
 Shared decision-making
 Anticipatory planning
3. Family-centred approach
 Respond to needs identified by parents and young people
 Promote ‘humanised values’ (choice, dignity, control, support, etc)
4. Complex interventions
 Wide applicability
 Elaborate implementation processes
INTERVENTIONS (cont.)

5.  Complex interventions
 Lack definition
 Lack of control (underway and changing)
 Sample (small & heterogeneous)
 Ethical issues
 Paediatric Palliative Care is relatively new
CHALLENGES

6. Definitive evaluation of effectiveness is premature
MRC guidance
Realist inquiry
how
Formative evaluations:
 Clarify aims of intervention (implementation, outcomes)
 Identify conditions that lead to better (or worse) outcomes
 Inform service development
 Inform subsequent research design
ATTEMPTED SOLUTION
Does it work?
What works, for whom, in what circumstances, in
what respects, and how

7. SOLUTION
 Network of expertise
 PPI involvement (young people and parents)
 National endorsement: Together for Short Lives

8. Advance Care Plan
1. Health Foundation (themed call)
2. NIHR Health Services and
Delivery Research (Open call)
 Final Round (n=15)
 Ambitious, realist inquiry, not
longitudinal
3. NIHR Research for Patient
Benefit (themed call)
 Waiting to hear
Magnolia House
1. BCH Foundation
2. Health Foundation:
Innovating for Improvement
 Waiting to hear
FUNDING
The assessors were impressed with overall
quality of the submission, identifying that the
methodology was robust, and noted the
impressive expertise of the research team.
Consequently the proposal was classified as
potentially of interest in the future
This is not research, merely a
process to monitor a new
service with the aim of
improving it
Query why additional funding for this
evaluation is needed when it should
have been set up in the plans
It seems late to evaluate the impact of a
facility after funding has been secured and it
has been built. What would be more suitable
is assessing different models of care to
identify the most efficient or effective.

9. A plan
for life
ADVANCED CARE PLAN
To help children and young people live as well as
possible, for as long as possible and to choose
the care they want in the places they want it

10. WHAT IS THE ACP?
A tool to support families and professionals to (i) discuss,
(ii) document, and (ii) agree plans to manage:
1) Illnesses or declines (expected to be reversible)
2) Emergency and end of life care
3) Family wishes
Completion:
 Anyone who knows the family well
 Discussed over an extended period
 Shared with professionals
 Reviewed regularly
 Belongs to family
 Designed to be used in all environments that the child encounters

11. In the UK: 49,000 children and young people with life-
limiting or life-threatening conditions (Fraser 2012)
1. Curative treatment may be feasible but can fail (e.g. cancer, some
organ failures) - access to palliative/emergency care may be necessary when
treatment fails or during acute crises.
2. Premature death is inevitable (e.g. cystic fibrosis, Duchenne muscular
dystrophy) - may be long periods of intense treatment aimed at prolonging life
and participation in normal life
3. Progressive without curative treatment options (e.g. Batten disease) -
treatment is exclusively palliative and may extend over many years
4. Irreversible but non-progressive - causing severe disability, leading to
susceptibility to health complications and likelihood of premature death (e.g.
severe cerebral palsy, multiple disabilities such as following brain or spinal core
injury)
WHO IS THE ACP FOR?

12. WHAT IS THE EVIDENCE-BASE?
RATIONALE
 National agenda (DH 2008)
 Care is suboptimal and crisis driven (DH 2008)
 Discussions happen too late (Brook 2008)
 Lack of recognition/support puts parents at risk (Rosenberg et al, 2012)
 Rising national prevalence (Fraser 2012)
 75% die in hospital (DH,2007)
EVIDENCE
Recent systematic review identified only 13 relevant articles (Lotz et al, 2013)
 3 paediatric ACP programmes
 1 evaluation

13. OUR PLAN
Aim: To undertake a formative realist evaluation of the ACP
 Recognises interventions can work differently in different situations and
circumstances.
 Starts and ends with theory:
How the ACP leads to its effects and in what conditions it should do so
 Method-neutral
 Involves generate, test and refine Context–Mechanism-Outcome-
Configurations (CMOCs)
Encapsulate what we understand about the relationship between the type and
nature of approaches to ACP (mechanisms), within the different
settings/situations that they are used (context) and the impacts of this on
children, families, staff, practice and organisations ( outcomes).

14. ACP CONTEXT
Mechanisms
Underlying social/psychological
drivers that trigger the
reasoning/behaviour of actors
Context
The conditions relevant to
triggering the mechanism
Outcome Patterns
The effects resulting from the
activation of different
mechanisms in different contexts
Increased application of
knowledge
Young person’s capacity Care aligning to wishes
Improved communication
skills/practices
Timing of introduction Better symptom control
Genuine opportunities for
shared decision-making
Environment Increased satisfaction
with care
Information sharing
across boundaries
Professional status More co-ordinated care

15. Aim
Develop candidate theories (conjectured CMOC)
Methods: Evidence review
 Scoping review
 Audit of existing ACPs (n>300)
Analysis: Realist synthesis (Pawson et al, 2005)
• Identify patterns of outcome
• Mechanisms generating those outcomes
• The contexts in which particular mechanisms may or may not
‘fire’
The ACP, in this context, triggers this particular mechanism for
these actors, generating these outcomes
GENERATING THE THEORIES –
STEP 1: ‘LAUNCH PAD’

16. Aim:
To refine our thinking and generate statements to test with
participants
Methods:
Focus groups with stakeholders (Networks, PPI)
Which conjectured CMOCs offers the most robust and plausible
explanation of the observed pattern of outcomes.
 Validity
 Prioritising
 Grouping
 User friendly
GENERATING THE THEORIES –
STEP 2: INTERROGATION

17. 1. Present our theories to families and staff
2. Extent to which they reflect experience (Likert scale)
3. Confirm, disprove and refine theories (qualitative data)
Case-linked ‘realist interviews’
 Purposively sampled
 Specialists to support involvement
 Youth-based approaches
 Eligibility (appropriate to approach & have support)
TESTING THE THEORIES
Children/Parents
Staff who
complete ACPs
Staff to whom
ACP is copied

18. TESTING THE THEORIES (cont.)
Confidential private blog (secure website)
 All families (n>300)
 Support inclusivity & sub-group analysis
Optimising response
 Anonymous message board & Freepost postcard
Analysis
 Thematic framework analysis
 Corpus linguistics: Uses computational and statistical tools to look
for recurring patterns of language use.
 Iterative process to develop ‘actual CMOCs’
 Follow threads, seeking disconfirming evidence, cross-case comparison

19. 1. Improve quality in emergency & palliative care
2. Beneficial outcomes for children, young people &
families
By informing:
 Redesign of the ACP and its supporting guidance
 Workforce education and development
 Effective and sustainable approaches to evaluation
Funding:
 Prioritising work,
 Redesign ACP,
 Dissemination
 Celebration event
TRANSLATED INTO PRACTICE

20. MAGNOLIA HOUSE
To improve:
1. the quality and confidentiality of
conversations with families
2. access to practical and emotional support
3. feedback mechanisms for families and staff
to evaluate how well BCH demonstrates
compassion and caring

21. MAGNOLIA HOUSE
at Birmingham Children’s Hospital
Co-designed with users
 Private spaces
 Contemplative communal spaces
 Support
 Educational opportunities
A response to:
 Local need
 Evidence
 Policy

22. Aim:
To examine how and in what contexts Magnolia House works (i.e.
supports better communication and outcomes) or can be amended to
work, and with what impact.
Methods:
(i) Pre-post occupancy survey with BCH specialities to:
 Describe pre-occupancy practice (in reference to best practice) and satisfaction with
care
 Examine uptake
 Assess change in practice & satisfaction with care
MAGNOLIA HOUSE

23. Post-occupancy survey:
To explore the extent to which Magnolia House does/does not:
 offer a physical space that contributes to comfort, well-being and health,
 facilitate best practice in communicating bad/significant news
 improve experience and satisfaction with care
 support learning
 support better outcomes (e.g. decision-making, care-planning)
 have unanticipated outcomes/risks
Post-occupancy interviews
 Complex interplay between setting, experience, and behaviour, participants
 All users invited to participate interviews about their experiences of using Magnolia
House and the meanings attached to those.
Data analysis/synthesis
 Qualitative: Phenomenological/framework (Healing Places’ and ‘Humanisation of
Healthcare’)
 Improvement frameworks (RE-AIM, Kirkpatrick's evaluation of learning models) to
examine change at individual and organisational levels
MAGNOLIA HOUSE

24. Suggestions
welcome!THE WAY FORWARD

25. ADDRESS REVIEWERS COMMENTS
Realist inquiry (strengthen team)
Reduce uncertainty
 Collect preliminary data to tighten focus (aims, outcomes, context)
1.Audit
 Evidence that families are offered opportunities to discuss wishes
 documented with sufficient clarity to allow implementation
 Degree of reach (e.g. any underrepresented groups)?
 Fidelity (e.g. is completion influenced by condition/setting)
 Risk (e.g. potential for error, missing data)
2. Scoping review to identify CMOCs
3. Baseline survey of current practice in delivering bad/sensitive news
Challenge our status quo bias (do something different)