1. Dr Judith Carrier- Senior Lecturer/Director Postgraduate Taught
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:
Task driven nature of nurses’ routines
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:
Have knowledge of their condition
Follow a treatment plan agreed with their health professional
Actively share in decision making with health professionals
Monitor and manage signs and symptoms of their condition
Manage the impact of the condition on their physical, emotional and social life
Adopt lifestyles that promote health
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

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

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.: CD DOI: / CD 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 (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.: CD DOI:  / CD pub3  

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

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

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

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

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)

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.: CD DOI: / CD pub2. 
What is needed?
Further research

19. Discussion/Questions?
Now for your ideas?