Self Management

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Self Management

• ECCO 2008
• Kathy Whayman

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London Lyon
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Aim of this session

• Look at what is already known about self
  management IBD
• Summarise our local work so far
• Provide an opportunity to move our knowledge
  forward in terms of the nursing role

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UK guideline recommendations

• The role of the IBD Nurse Specialist may
  encompass
• developing and leading of patient education
  programmes
• providing and interpreting often complex
  information
• Support advice for patients families in
  coping with IBD
• Providing resources such as helplines, rapid
  access and follow up
• Carter et al, 2004 Gut 53(suppl)v1-16

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Key points

• What are the facts?
• What are the challenges when educating people
  with IBD to be confident in managing their own
  condition?
• Do we agree with this approach to care?
• What do we, as nurses need in order to educate
  patients to manage their own condition?

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An anecdote
To me, knowledge is power if I know how my
condition works, and have access to the relevant
information and specialist advice then I am
better prepared to recognise and deal with the
symptoms and side effects of my treatment. This
way, I feel better able to carry on with my usual
daily activities if I know what to expect and how
to cope with it. Caroline, diagnosed with
rheumatoid arthritis in 2002
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The Facts

• The greatest challenge for health systems in the
  21st century will be to develop effective
  responses to the growing burden of chronic
  diseases (1)
• Nearly 20m people with a chronic illness in UK
  (2)
• The new millennium has seen a shift in the
  management of chronic illness
• (1) European Observatory (2003)
  http//www.euro.who.int/observatory/Studies/200611
  09_2 accessed Feb 2008
• (2) http//www.cureresearch.com accessed Feb 2008

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Inflammatory Bowel Disease

• Estimated 240,000 people with IBD in the UK
• IBD has a disproportional high impact on society
• Occurring often at a young age
• Potential to result in lifelong ill health
• Can have major physical, developmental,
  psychological, social effects decreasing
  individual and families quality of life.
• Carter et al, 2004 Gut 53(suppl)v1-16

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Inflammatory Bowel Disease

• The facts
• Unpredictable disease, severity frequency of
  symptoms variable
• Embarrassing loose stools abdo discomfort
• Maintenance may be over an indefinite period
• Some undergo surgical intervention
• Importance of individualised care, and
  recognition of patient as expert (Carter et al,
  2004 NACC)
• Thus, is the approach of regular follow up
  outpatient care the best use of resources?

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The political perspective

• Key priority for UK Department of Health in 2008
  empowering people to manage their condition
  where possible, providing access to specialist
  advice and personalised care

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Key papers (Department of Health)
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The Expert Patient Programme

• Based on Kate Lorigs work in California on self
  management living a healthy life with a chronic
  condition (CDSMP)
• A lay led generic programme of education for
  patients
• Run by trained volunteers
• Quality assured
• Designed to improve confidence, self efficacy,
  fewer visits to the Dr, more ve attitude to
  living with their condition

Lorig at al, Arthritis Rheum 1993 36439-46,
Lorig, Holman et al (2000) Boulder Bull
Publishing
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Self Care or Self Management? Hall et al, 2007
GIN, 5(5) 34-38

• People with a chronic disease routinely carry out
  self care - as part of their daily life
• the actions people employ to stay fit, maintain
  good physical and mental health, and care for
  ailments and long term conditions
• People with IBD routinely cope with symptoms and
  everyday IBD related problems, i.e.
• deciding about what to eat, when to take
  medication, whether to attend outpatient
  appointments or ring the telephone helpline.
  

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Self management

• Guided self management incorporates and extends
  the elements of self care developing skills for
  action to be taken by individuals if problems
  occur

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Who is the expert?

• Traditionally healthcare professional
• But now
• Recognition that patients are experts in knowing
  how their disease affects their life, how to take
  medication, or when flares occur and how best to
  manage situations as they arise
• The management of disease ideally set up as a
  partnership between patient and healthcare
  professional

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Research evidence

• Education, information provision and
  self-empowerment can assist in developing the
  individuals ability to cope, comply with
  treatment and improve long term management of the
  disease
• Larsson et al, 2003,Scand J of Gastroenterology
  38(7) 763-9).

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Guided Self Management

• Robinson et al (2001) Lancet 358976-81
• Self management of stable UC
• Self management training

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Robinson et al (2001)

• Interval between relapse and initiation of
  therapy 14.8 (IG) vs 49.6 hrs
• IG fewer visits to clinic - 0.9 vs 2.9
• Shorter relapses for patients who initiated
  therapy within 24 hrs
• Total number of relapses higher in IG 96 (IG)
  vs 50 (CG)
• QOL scores no different
• Costs lower
• Most participants preferred new SM system

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Research EvidenceKennedy et al (2004) Gut 53(11)
1639-45

• RCT multi centre 635 patients across 19 sites
• Assess effectiveness of a guidebook,
  consultation, helpline and patient requested
  follow up
• Significant reduction in symptoms
• Reduction in hospital and primary care visits
• No difference in QOL reported, (but increased QOL
  found in narrative qualitative data )
• Suggestion of whole structured approach to
  information and patient education

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Quality of life and disease related information

• Patients have reported they have felt uniformed
  about their disease wish to be educated to
  manage their condition (Probert et al 1993, J R
  Soc Med 86 271-2)
• But some suggestion that health related
  information has no effect (Verma Giaffer, 2001
  Digestive Dis and Sci 46(4) 865-869) or even
  worsens QOL (Borgaonkar et al, 2002 Inflammatory
  Bowel Dis 8(4) 264-9)

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Local work so far education support group for UC

• Based on CDSMP work of Lorig
• Material sourced from CESP (Colitis Education
  Support Programme), University of Northumbria
• 2 sessions over 2 weeks (with an optional 3rd to
  cover anything missed)
• 2 Facilitators - 1 IBD nurse 1 Lecturer
• 3 patients enrolled, all female between 19 yrs
  55yrs

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Evaluation

• Patient questionnaire and qualitative feedback
  positive/IBD knowledge increased
• Facilitator experience evaluated
• Useful to have psychologist support before and
  after for facilitators (and patients)
• Blurred boundaries for nurse specialist
  facilitator
• Need to provide programme at a suitable time of
  day for patients

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Local work so far. Consultation for
professionals

• Meeting agenda What is the way forward for IBD
  patient education?
• Open invitation to interested professionals
• Included how to set up programmes
• How to facilitate groups
• Role of facilitator
• Corbett Whayman (2006) GIN, 4(5) 10-11

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Evaluation

• Many expressed a lack of confidence in
  facilitating groups
• Psychology support was deemed necessary to
  support facilitators and to consult on
  psychological difficulties of any group
  participants
• Training need identified for nurse specialists
• Databases and funding deemed difficult to
  establish in many settings
• Adult learning discussed - moving away from
  solely providing information to patients to
  education

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Current work

• Identification design of a patient education
  strategy
• Question Does the provision of a structured
  programme of information and education influence
  the use of healthcare resources, affect the
  confidence and level of disease activity for
  people with inflammatory bowel disease?

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Current work

• Bringing everything together
• structured/tailored information, IBD nurse
  specialist support and education support groups
• Pilot a three tiered model for service
  improvement
• Stakeholder meeting
• Information needs identified by users and
  clinical members of healthcare team
• Information grouped under topic headings and
  database created
• for clinician/CNS to access in clinic

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Current work

• Answering a request by our users to provide
  individualised, tailor made and relevant
  information when they want it
• Aim to make specialist advice support available
  to all as standard
• Empowering patients to feel confident to manage
  their condition and day to day issues, seeking
  healthcare resources when they need it

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So - Do we agree?

• Do the facts point to a radical realignment in
  the management of patients with IBD?
• Patients could take a more active role in their
  therapy
• Nurses are ideally placed to empower and educate
  patients in self management techniques
• Evidence suggests that resource usage, cost and
  disease activity can be improved in the short
  term
• But how does this affect the patient experience
  and can this be measured effectively?

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And So

• One size does not fit all
• Patient education or provision of information
  alone is not enough
• This is more than just compliance
• Individualised, tailor made care and measurement
  of outcomes
• Attitudes of all healthcare professionals need to
  change
• A variety of approaches in different healthcare
  settings is required
• Can we realise ideal that managing IBD can be a
  partnership between clinician and patient?

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Time to go