What we know and what we still need to

know about non-pharmacological

treatment

Dr Jane Martindale

PhD, BA, Grad Dip Phys

your hospitals, your health, our priorityST05_Mar12

Education/Self Management Barlow

1 suggested that patient education should be

seen as a means of promoting self-efficacy amongst people with AS, thus enhancing psychological well-being and performance of health behaviour (exercise).

Individuals living with long term conditions spend approximately 3 hours every year with healthcare professionals…

for the other 8,757 hours they look after themselves

We need to get this right

Barlow, J Barefoot, J. Group education for people with arthritis. Patient Education and counselling 1996;27:3

Self management programmes for AS

Barlow and Barefoot, 1996• Intensive tuition and included hydrotherapy and

standard exercises, exercise motivation sessions, information about AS and posture.

• Non-randomised comparison between the first 30 participants on the programme and matched controls at baseline and 6 months.

• Statistically significant differences in self-efficacy scores and depression were seen between the intervention and control groups

• No difference between measured disease severity and function.

• Increases in exercise frequency seen at 3 weeks in the intervention group did not persist at 6 months.

Barlow, J Barefoot, J. Group education for people with arthritis. Patient Education and counselling 1996;27:3

Cooksey 2012• Sufficient information available in UK but

accessed by younger people• 73% had internet access but only 49% used it

for AS• Men tend to choose not to access information• Concerns about negative tone of information• Patients rely on written and verbal information

from their specialists

Information needs

Cooksey et al. The information needs of people living with AS: a questionnaire survey. BMC Musculoskeletal Disorders 2012:13:243

Self management programmes for AS

What evidence do we have?

• Unlike RA - lack of generic education programme for AS

• Few controlled studies evaluating group educational interventions have been published• Currently no unified approach to content or delivery i.e. one to one/group

Challenges

• What constitutes an educational intervention/self management programme?

• What should the content be and who should design it?• When and how should it be delivered – group setting in

secondary care, one to one or electronically?• How do we determine efficacy?• Can it be generic e.g. Expert Patient Programme• Can we determine the impact from charities such as

the resources available from the NASS website?

Challenges

And ……not an easy area to research• Educational programme evaluation needs to take other

variables into account e.g. levels of education, social circumstances, personality, educational needs and expectations.

• The ‘mode of action’ of education is not straightforward and can we compare this to a pharmacological effect?

• Factors such as participants’ motivation and ability to learn, their pre-existing behaviour and beliefs and relationships with other people can have a significant influence.

Exercise and Aquatic Physiotherapy

Dagfinrud Cochrane review 20081

Results suggest that an individual home-based or supervised exercise program is better than no intervention

• Supervised group physiotherapy is better than home exercises• Combined inpatient spa-exercise therapy followed by group

physiotherapy is better than group physiotherapy alone.• There is “silver” level evidence (www.cochranemsk.org) that

exercise programs, home-based or supervised, are better than no exercises and improve movement and physical function.

• Adding a few weeks of exercising at a spa resort to weekly group exercises is better than just weekly group exercises.

1. Dagfinrud H, Hagen KB, Kvien TK. Physiotherapy interventions for ankylosing spondylitis. Cochrane Database of Systematic Reviews 2008, Issue 1. Art. No.: CD002822. DOI: 10.1002/14651858.CD002822.pub3.

Aquatic Physiotherapy- Cochrane Review

• Balneotherapy in addition to exercise program did not show additional effect, nor did balneotherapy compared to fresh water therapy.

• One study compared daily outpatient balneotherapy and an exercise program with only exercise program, and another study compared balneotherapy with fresh water therapy. None of these studies showed significant between-group differences

Challenges in the UK – an example

‘Land based versus water based exercises in patients with Ankylosing Spondylitis: a systematic review with meta-analysis’ – (not published) Only two RCTs with 104 AS patients were eligible in this review; evaluation was completed in 83 patients. It is acknowledged both the included RCTs had major methodological weaknesses and were deemed to have high risk of bias.’

Dagfinrud H, Hagen KB, Kvien TK. Physiotherapy interventions for ankylosing spondylitis. Cochrane Database of SystematicReviews 2008, Issue 1. Art. No.: CD002822. DOI: 10.1002/14651858.CD002822.pub3.

• Need high quality studies

• Studies planned with recommendations for developing physical fitness

• Include measures for evaluating physiologic responses

• Monitored adherence

• Must include description of interventions for reproducibility clinically

Challenges

Challenges continued

• Motivation (Brophy, 2013)• Dose and frequency• Exercise behaviours• Adherence/compliance• Barriers and facilitators to exercise• Safety• One ‘size’ may not fit all – personalised/tailored

programmes?It can be done

SARAH study in RABrophy, S et al. The effect of physical activity and motivation on function in ankylosing spondylitis: A cohort study. Semin Arthritis Rheum 2013 42:619-26

Psychological interventions• Growing literature indicating psychological impact associated with

AS (anxiety and depression). • One third of AS patients within a population of 129 men and 48

women had depressive symptoms and that women were more susceptible to depression than men1

• Associations between anxiety and depression with disease outcomes 2

• BUT• How are we addressing this clinically? – paucity of evidence e.g.

CBT/Mindfulness/Counselling• ‘Need for future research to focus on psychological interventions to address multi-faceted aspects of fatigue in AS’

Barlow, J et al Gender, depression and ankylosing spondylitis. Arthritis and Rheumatism 1993 6;1; 45-51

Martindale J, et al 2006 ‘Disease and Psychological Status in Ankylosing Spondylitis’. Rheumatology; 2006 45; 1; 1288-1293

Complementary Medicine/Alternative Therapies/Diet

‘The evidence on electro physical modalities, balaneotherapy, and dietary interventions and alternative or complementary interventions for managing RA and AS is generally weak and inconclusive’

‘Despite low ratesof perceived benefit, dietary CAM use and practitioner attendance is common among AS patients’

RELAINCE ON

EXPERT

OPINION

People may need tailored/personalised interventions throughout their life course

We lack understanding of these issues……• Do we need to treat people with Axial SpA differently to

those with ‘AS’? Reduction of time to diagnosis should be a priority – how effective can we be?

• Employment – need for interventions to help people to stay in work/get back into work – Occupational Therapy

• Pregnancy/parenting/grand-parenting – what impact does this have and what do we do about it?

Lifestyle factors

Suggestions for priorities

• High quality exercise and aquatic physiotherapy studies including safety, ‘prescription’, reproducibility, exercise behaviour, motivational aspects

• High quality Self management/Educational programmes which answer what is needed, when it should be delivered and how? Potentially include creative and innovative programmes which capture the impact of resources from our Charities e.g. ‘Back to Action’

• Development of screening tools to enable a stratified approach to treatment e.g. STarT Back Screening Tool

BUT

• Can we design and carry out studies at a ‘gold-standard’ equivalent to those that evaluate of pharmaceutical treatments – the double-blind, placebo-controlled, randomised controlled trial?

• Must seek to reach a tangible ‘proof’ that the intervention is effective, evidenced by statistically significant differences between patients who have undergone an intervention and those in a control group.

• So far we only have a few

pieces of a much larger jigsaw

Can we design?• Standardised interventions that can be replicated in clinical

practice

• Robust protocols which are methodologically sound in areas notoriously difficult to research

• Large multicentre studies

• Collaborative studies which share our expertise

The True Challenge for Us All

Stratification – the right person, the right treatment at the right time

A Vision for the Future?

A stratified approach for every patient

Via

Screening Tools used in conjunction with a biopsychosocial assessment to identify what is needed and how it should be delivered

Education and Interventions which are evidence based and are reproducible in clinical practice

Personalised interventions to meet the

challenges our patients face throughout

their life course