Developing research priorities for Long-term conditions

PRIME Centre Wales Long Term Conditions Consensus Meeting

Dr Judith Carrier- Senior Lecturer/Director

Postgraduate Taught

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.

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’ routines2. Lack of motivation by nurses to engage with self

management activities (Kennedy et al 2013)

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)

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)

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)

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)

Seven characteristics of a ‘good’ self manager

The capacity of an individual to:

1. Have knowledge of their condition2. Follow a treatment plan agreed with their health professional3. Actively share in decision making with health professionals4. Monitor and manage signs and symptoms of their condition5. Manage the impact of the condition on their physical, emotional

and social life6. Adopt lifestyles that promote health7. Have confidence, access and the ability to use support services

(Flinders University 2014)

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

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 researchhttp://www.library.nhs.uk/duets/ViewResource.aspx?resID=417093&tabID=296

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.pub4Loveman 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):1-202Bosch-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

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 affectingoutcomes.Cognitive and communication impairments interact with mood and often compound difficulties bycompromising 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 researchhttp://www.library.nhs.uk/duets/ViewResource.aspx?resID=415796&tabID=297

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

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 researchhttp://www.library.nhs.uk/duets/ViewResource.aspx?resID=416015&tabID=296

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

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

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&tab

ID=296

Discussion/Questions?

Now for your ideas?