Considerations, Challenges and Cautionary Tales from a Randomised Controlled Trial of LayLed Asthma

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Considerations, Challenges and Cautionary Tales
from a Randomised Controlled Trial of Lay-Led
Asthma Self-Management Education
Involving Service Users

• Ann-Louise Caress, Jean Hennings, Malcolm
  Campbell, Ashley Woodcock, Karen Luker
• The University of Manchester and the North West
  Lung Centre
• Martyn Partridge, Clare Brown Imperial
  College, London

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Background to the Study

• Self-management education in asthma improves
  patient outcomes and is recommended in guidelines
• However, many patients do not receive such
  education
• Service pressures and shortage of healthcare
  professionals may contribute to this
• There is increasing recognition of the potential
  of service users to contribute alongside health
  professionals to patient education
• However, such work presents important
  considerations and challenges

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The Study Hypothesis

• Doctors and Nurses are overworked and have
  limited time available
• A well trained lay person with asthma may be able
  to offer self management education as effectively
  as a nurse

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The Study

• Randomised equivalence trial with nurse-led and
  lay-led arms
• General practices in Manchester and London (N30)
• Compares outcomes (healthcare utilisation, asthma
  outcomes and quality of life)
• Compares acceptability (patient satisfaction,
  perceived enablement and retention)

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The Intervention

• Initial face-to-face consultation (approx 45
  mins), including full asthma history and asthma
  education (e.g. regarding inhaler technique,
  self-management)
• Second face-to-face consultation three weeks
  later, including development of personalised
  asthma action plan
• Telephone review at three monthly intervals for
  12 month period

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Issues to Consider and Challenges Encountered

• Identification and recruitment of lay educators
• Training
• Putting lay educators into practice settings
• Evaluating effectiveness
• Sustaining the initiative

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Identification and Recruitment of Lay Educators

• Who? (e.g. Manchester approx 40 people
  approached, only 10 expressed an interest)
• Where from? (known contacts? open advert?)
• Interviewing and screening
• Expectations and feasibility
• Job description and contract
• Payment

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Lay Educators Perspectives on Qualities Needed
by Lay Educators

• LE1 Determination to carry on I think.
  Persistence and to be
• able to keep records
• LE2 Organisation, which you are used to, and I
  am used to
• with my occupation. If you werent
  organised you would
• be in a bit of a pickle
• LE1 I think you have got to be sympathetic, you
  have got to
• like people as well. A certain amount
  of people skills
• You have to be fairly persistent. You
  have got to be a
• little bit assertive at times. And not
  be put off You have
• got to be reliable as well. You cant
  just decide Oh I dont
• feel well, I am not going to bother.
  You need a person
• who is going to be conscientious and no
  matter what is
• going to go

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Training

• What content is needed?
• Asthma and non-asthma aspects
• Who will deliver this?
• Training costs
• Timing
• Nurses need training as well as lay educators

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Lay Educators Perspective on Prior Experience
and Training Needs

• I didnt feel like an expert patient. Not
  until we had had the training at training
  centre and the training that we had here
  university, did I realise that I had learnt
  about things that I could pass on.
• I dont think that initially I thought that I was
  equipped to help other people. Perhaps yes, about
  how it feels to be an asthmatic, but not how to
  monitor the condition that came after we had had
  our training

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Putting Lay Educators into Practice

• Finding willing and suitable sites
• Difficult in pressured NHS environment
• Whats in it for them?
• Implications of on-going initiatives in NHS (e.g.
  GP GMS contract, targets)
• Bolton- an exemplar all practices in PCT
  invited six expressed an interest two received
  training one withdrew after training one
  practice from entire PCT

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Putting Lay Educators into Practice

• Practical issues
• Boundaries of practice
• Research and clinical governance considerations
  (nb time!)
• Mentoring and support needs
• Quality assurance

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Getting Started Lay Educators Perspective

• You are used to going to the doctors surgery as
  a patient. But this was being on the other
  side.Apart from being in a doctors surgery and
  the various treatment rooms, I have never been on
  the other side of the glass partition.
• It was that, being led into the room. In all of
  my practices, its the doctors room, the doctors
  consultation room, so I have been sitting ON
  THE DOCTORS LEATHER CHAIR (laughs, sits up
  straight, hands on knees, serious face).
• And having all his equipment in front of you.
  Welcoming the patient in and sitting them down
  where I would normally be sitting. That took a
  bit of getting used to, that really was weird

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Boundaries of Practice

• You do get involved with the patients because
  they tell you all sorts of things. Not
  necessarily related to what you are talking
  about. I do think that it does help for them to
  be able to talk
• As soon as they start telling of their
  digestive problems and the piles and things like
  that, you have to stress - sorry cant help you
  with anything else except your asthma. I do think
  they forget who we are

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Lay Educators Mentoring and Support Needs

• I felt I had been rejected when a patient
  failed to attend.
• I had seen her for the first visit I was going
  for the 2nd face-to-face and she didnt turn up,
  and I was sitting in the consulting room waiting
  for her for about three quarters of an hour. I
  thought Why isnt she coming, is it the
  traffic?
• Eventually, I just had to give up and I had a
  word with reception and they said this particular
  patient is very unreliable dont worry about it.
  I did try to contact her on a number of
  occasions, but she would not take my phone calls.
  I eventually realised that perhaps she didnt
  want to pursue it. I did feel that maybe it was
  because of me

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Lay Educators Mentoring and Support Needs

• There was one particular patient I was very
  concerned about.
• Perhaps I did more than I should really by
  insisting that he went to see the Doctor.
  Ringing the Doctor and making the appointment for
  him to go and then ringing him up to see how he
  had gone on.
• I did ring the patient a few days later and he
  was actually much better. But I was very
  concerned about him, because he was quite poorly.
  I dont think he realised how poorly he was...he
  thanked me for what I had done for him.
• Thats very satisfying. I did feel I have really
  helped this man

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Evaluating Effectiveness

• Non-threatening approach to undertaking
  evaluation
• Choice of appropriate outcomes is important, but
  difficult
• Process issues are as important as clinical
  outcomes

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Sustaining the Initiative

• Retaining lay educators maintaining interest
  own health other commitments
• Retaining practices nurse turnover, workload
  pressure, other priorities
• Retaining patients duration of follow-up
  challenging population mobile population
• Exit strategy for patients for lay educators
• After the study what next?

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Need for an Exit Strategy- Lay Educators
Perspective

• LE1 Its quite sad really isnt it? Having to
  say This is your final consultation and then
  they will say Thank you
• LE2 You have built up a sort of relationship
  with them, a rapport. Particularly these chatty
  ones. Yes you feel a bit sad really
• LE1 When they say thank you it is a nice
  feeling
• LE2 But you feel a bit sad too

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Retaining Lay Educators

• Manchester arm of study an exemplar
• 10 lay people recruited
• 3 dropped out before training
• 1 did not complete training
• 2 lost after training due to ill health
• 1 lost after training due to change in personal
  commitments
• 1 withdrawn from programme due to problems with
  commitment and reliability
• 2 lay educators still active in the study

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Conclusions

• Involving lay people in asthma self-management
  education is feasible
• However, it requires considerable resources and
  attention to a wide range of issues (e.g.
  practical, logistical, governance)
• On-going support of all parties (lay educators
  and practices) is essential

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Acknowledgements

• This study is funded by the BUPA Foundation,
  whose support is gratefully acknowledged
• We are grateful to the study sites and patients
  for their participation
• Most of all, we are grateful to our lay educators
  for their hard work and on-going commitment

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Lay Educators Summing Up of the Experience

• Generally speaking I think the experience has
  been quite good. I have enjoyed it, it has been
  quite interesting, and I have been to different
  areas geographical and knowledge-related that I
  didnt know
• I sometimes wonder what it is that I have done,
  that is different from what say a practice
  nurse or a doctor would do for them. And I think
  basically, I would say listened to them more, I
  have given them time...I dont feel I have done
  anything too, erm, not difficult it has been
  quite simple what I have done. I think the main
  thing I have helped them with is just basically
  knowing what all the medication does for them,
  what its purpose is, the order in which to take
  it