PRIME Centre Wales Long Term Conditions Consensus Meeting Tuesday 10th November 2015, St Mary's Priory, Abergavenny, NP7 5ND http://www.primecentre.wales/ltc-consensus-meeting.php

1. Developing research priorities for
Long-term conditions
PRIME Centre Wales Long Term Conditions Consensus Meeting
Dr Judith Carrier-
Senior Lecturer/Director
Postgraduate Taught

2. So what’s the problem?
• Increasing numbers/stretched resources
• Victims of our own success (increased life expectancy has resulted in LTCs
emerging as the dominant challenge to health and care systems)
• Numbers continue to rise due to an ageing population and certain lifestyle
choices that people make.
• Geographical variation (nationally and internationally)
• Patient surveys persistently show that half of patients feel they aren’t
involved in decisions about their care (Eaton 2012)
• Living with an LTC can have a physical, psychological and psychosocial
impact on individuals.

3. Supported self-care-what should we
be doing in primary care?
Implementation gap between policy aspirations and
delivery of self-management support in primary care
Self-management hindered by:
1. Task driven nature of nurses’ routines
2. Lack of motivation by nurses to engage with self
management activities
(Kennedy et al 2013)

4. What do we know already?
Three themes that shape peoples’ responses to
self-management
• The different ways in which people receive their diagnosis
• The fact that different people have different responses
• The fact that peoples’ ability to self-manage changes over
time
(Corben and Rosen 2005)

5. What do we know already?
Three themes that support effective self-
management
• Good relationships between health professionals and patients
• The need for patients to have clear information about their
condition and guidance on how to access it
• The need for flexibility in service provision
(Corben and Rosen 2005)

6. Self-care interventions-what’s
effective?
• All round interventions that include continuing
education, physician feedback and patient oriented
interventions (Renders et al 2011)
• Problem-solving interventions (Fitzpatrick et al 2012)
• Action plans as part of a multi-faceted self management
programme (Walters et al 2010)
• Group education or individual education combined with
other self-management strategies (de Silva 2011)

7. Self-care interventions-what’s
effective?
Patent practitioner encounter should encompass:
 Sound information at diagnosis
 Comprehensive, paced, user friendly information
 Allowing patients to discuss their own ideas about self-care actions,
including life-style management
 Allowing patients to feel listened too and have time to ask
questions
 Time, resources, open access, seeing the same doctor, appropriate
referral
 Orientating consultations towards skills and competencies needed
for self care
 Goal setting and care planning
(Rees and Williams 2009)

8. Seven characteristics of a ‘good’ self
manager
The capacity of an individual to:
1. Have knowledge of their condition
2. Follow a treatment plan agreed with their health professional
3. Actively share in decision making with health professionals
4. Monitor and manage signs and symptoms of their condition
5. Manage the impact of the condition on their physical, emotional
and social life
6. Adopt lifestyles that promote health
7. Have confidence, access and the ability to use support services
(Flinders University 2014)

9. What don’t we know?
UK Database of Uncertainties about the effects of treatments (DUETs)
What are the best ways to begin to deliver palliative care for patients with non-
cancer diseases (such as chronic obstructive pulmonary disease (COPD), heart
failure, motor neurone disease (MND), AIDs, multiple sclerosis, Crohn’s disease
and stroke)?
• Why is there uncertainty?
• No relevant systematic reviews identified
http://www.library.nhs.uk/duets/ViewResource.aspx?resID=421130&tabID=296

10. What don’t we know?
UK Database of Uncertainties about the effects of treatments (DUETs)
Mobile phone messaging for facilitating self-management of long-term illnesses
2012 Cochrane review found some, albeit very limited, indications that in certain cases
mobile phone messaging interventions may provide benefit in supporting the self-
management of long-term illnesses. However, there are significant information
gaps regarding the long-term effects, acceptability, costs, and risks of such
interventions. Given the enthusiasm with which so-called mHealth interventions
are currently being implemented, further research into these issues is needed.
• Why is there uncertainty?
• Reliable up-to-date systematic reviews have revealed important continuing
uncertainties about treatment effects
• What is needed?
• Further research
http://www.library.nhs.uk/duets/ViewResource.aspx?resID=417093&tabID=296

11. What don’t we know?
UK Database of Uncertainties about the effects of treatments (DUETs)
Do educational programmes/training packages, for people with diabetes and their
carers, help control the condition, reduce anxiety and provide greater awareness
of the complications of the condition?
• Why is there uncertainty?
• Existing relevant systematic reviews are not up-to-date
• What is needed?
• Updating existing systematic reviews
• Systematic reviews that need updating or extending
• Murray E, Burns J, See Tai S, Lai R, Nazareth I. Interactive Health Communication Applications
for people with chronic disease. Cochrane Database of Systematic Reviews 2005, Issue 4. Art.
No.: CD004274. DOI:10.1002/14651858.CD004274.pub4
Loveman E, Cave C, Green C, Royle P, Dunn N, Waugh N. The clinical and cost-effectiveness of
patient education models for diabetes: a systematic review and economic evaluation. Health
Technology Assessment 2003 7(22):1-202
Bosch-Capblanch X, Abba K, Prictor M, Garner P. Contracts between patients and healthcare
practitioners for improving patients' adherence to treatment, prevention and health
promotion activities. Cochrane Database of Systematic Reviews 2007, Issue 2. Art. No.:
CD004808. DOI: 10.1002/14651858.CD004808.pub3
• http://www.library.nhs.uk/duets/ViewResource.aspx?resID=416142&tabID=294

12. What don’t we know?
UK Database of Uncertainties about the effects of treatments (DUETs)
Which cognitive and which emotional interventions provide better outcomes for
identified subgroups of people with stroke and their families and carers at different
stages of the stroke pathway?
• Why is there uncertainty?
• Reliable up-to-date systematic reviews have revealed important continuing uncertainties about
treatment effects
• Why this is important:- There are many well-established studies showing that mood disorders such
as depression and anxiety occur frequently after stroke and may occur at any point along the
rehabilitation pathway, causing distress to people with stroke and their families and carers and
adversely affecting
outcomes.
Cognitive and communication impairments interact with mood and often compound difficulties by
compromising people's abilities to participate in standard evidence-based psychological therapies.
The need for psychological input for people with stroke is well recognised (for example, by the
'National service framework for long-term neurological conditions'). However, the literature does
not provide robust evidence about which psychological interventions will be most effective for
different subgroups of people.
• What is needed?
• Further research
http://www.library.nhs.uk/duets/ViewResource.aspx?resID=415796&tabID=297

13. What don’t we know?
UK Database of Uncertainties about the effects of treatments (DUETs)
How can people with multiple sclerosis be best supported to self manage their condition?
• Why is there uncertainty?
• Existing relevant systematic reviews are not up-to-date
http://www.library.nhs.uk/duets/ViewResource.aspx?resID=416626&tabID=296

14. What don’t we know?
UK Database of Uncertainties about the effects of treatments (DUETs)
Are exercise and fitness programmes beneficial at improving function and quality of
life and avoiding subsequent stroke?
• Why is there uncertainty?
• Reliable up-to-date systematic reviews have revealed important continuing
uncertainties about treatment effect
• What is needed?
• Further research
http://www.library.nhs.uk/duets/ViewResource.aspx?resID=416015&tabID=296

15. What don’t we know?
UK Database of Uncertainties about the effects of treatments (DUETs)
What is the best way to promote self-management and self-help after stroke?
• Why is there uncertainty?
• No relevant systematic reviews identified
• What is needed?
• Systematic reviews
• http://www.library.nhs.uk/duets/ViewResource.aspx?resID=415887&tabID=296

16. What don’t we know?
UK Database of Uncertainties about the effects of treatments (DUETs)
Which is more effective in the management of eczema: education programmes, GP
care, nurse-led care, dermatologist-led care or multi disciplinary care?
• Why is there uncertainty?
• Existing relevant systematic reviews are not up-to-date
• What is needed?
• Updating existing systematic reviews
• Systematic reviews that need updating or extending
• Hoare C, Li Wan Po A, Williams H: Systematic review of treatments of atopic
eczema. Health Technology Assessment 2000: 4(37)
• http://www.library.nhs.uk/duets/ViewResource.aspx?resID=414455&tabID=296

17. What don’t we know?
UK Database of Uncertainties about the effects of treatments (DUETs)
Is Disease Management more effective than good quality usual care for heart
failure?
• Why is there uncertainty?
• Reliable up-to-date systematic reviews have revealed important continuing
uncertainties about treatment effect
• References to reliable up-to-date systematic reviews:
• Taylor SJC, Bestall JC, Cotter S, Falshaw M, Hood SG, Parsons S, Wood L,
Underwood M. Clinical service organisation for heart failure. Cochrane
Database of Systematic Reviews 2005, Issue 2. Art. No.: CD002752.
DOI:10.1002/14651858.CD002752.pub2.
• What is needed?
• Further research
• http://www.library.nhs.uk/duets/ViewResource.aspx?resID=308584&tabID=29
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19. Discussion/Questions?
Now for your ideas?