Dr Dorothée Debuse, PhD Hal Brace, MSc What outcomes of hippotherapy on people with cerebral palsy should be measured? The results of a qualitative study and a systematic review Dr Dorothée Debuse, PhD Hal Brace, MSc

Introduction 2001 the great majority of physiotherapists practising hippotherapy (HT) in the UK and in Germany did not systematically measure the outcomes of their intervention. 2003 focus groups with patients and physiotherapists in the UK and in Germany about what outcomes of HT should be evaluated 2008 based on the findings of these focus groups a systematic review was undertaken to identify the most relevant, valid and reliable outcome measures for people with cerebral palsy

Why does it matter? Physiotherapists all over the world are under pressure to justify the expense of HT in an environment of scarce health and social care resources. The issue of measuring outcome has implications for the quality of practice, affects the evidence-base of hippotherapy, has an important effect on what practitioners can refer to in order to justify their approach and to train new specialist clinicians.

What outcomes of hippotherapy on people with CP should be measured What outcomes of hippotherapy on people with CP should be measured? Results from a Qualitative Study

Methods - Patients Focus groups (FG) and semi-structured interviews with patients with CP +/- their parents 31 users +/- parents in FGs or interviews Age of users with CP: 5 to 63 (5 adult users with CP – all in Germany) GMFCS level I to V

Methods - Physiotherapists Focus groups (FG) One FG in the UK: 4 participants, 5 FGs in Germany: 16 participants An important finding that came out of Phase I of the study was the absence of a systematic approach to evaluating the outcome of hippotherapy, both in the UK and in Germany. This needed to be explored further, as not only has it implications for practice, it also keeps the evidence-base of hippotherapy unnecessarily small and leaves practitioners with little to refer to in order to justify their approach or train new specialist clinicians. Bearing in mind that, on the whole, clinicians did little to evaluate the outcome of hippotherapy, asking them why this was the case would have been confrontational and very probably made them defensive about their practice. Therefore, it was decided to explore with clinicians what outcomes should be evaluated and how this could be achieved.

Facilitation and Environment In patients’ and physiotherapists’ natural environment Researcher was facilitator, not contributor Ground rules Room set-up: informal, friendly, to create an atmosphere conducive to sharing personal experiences and views, as well as professional opinions What should be measured with patients with cerebral palsy who receive hippotherapy? How should this be measured? What should an outcome measure for hippotherapy be like? What should it not be like? What can we do to make it user-friendly? Is there anything else you would like to raise?

Data collection and analysis Study approved by relevant ethics bodies in the UK and in Germany; all participants gave their informed consent Facilitation (e.g. use of language) inclusive Everybody’s voice was heard Data saturation for both user/parents and physiotherapy groups Verbatim transcription Data analysis informed by Naturalistic Inquiry Strict “quality control” This means that the results can be accepted as credible and valid (Debuse, Gibb and Chandler 2009)

Results Considerable agreement within and between FGs and interviews, between physiotherapists and patients/ parents, and between FGs and interviews in the UK and in Germany.

Effects of HT to be measured Function Sit-to-stand Gait Activities of daily living: shopping, walking User opinion Posture, trunk control, head control Tone, incl. associated reactions/ movements Balance/righting reactions Prevention of deterioration Sense of achievement/psychological well-being

According to the physiotherapists, an outcome measure should… be quick and easy to understand, to use and to explain 1-2 pages of A4 Use of tick-boxes No need to write much be feasible in a hippotherapy environment (e.g. no need for patient to undress) be “SMART” (UK physiotherapists) avoid emphasis on impairment, but focus on function consider users’ (including children’s) views and experiences including something positive like “I’m looking forward to it”, or “sleeps better after HT” ? ? Specific Measurable Achievable Realistic Timed ?

What outcomes of hippotherapy on people with CP should be measured What outcomes of hippotherapy on people with CP should be measured? Results from a Systematic Review

Method

Results

So where do we go from here?

A quick reminder Both patients and physiotherapists identified functional outcomes as important Patients also identified psychological well-being as an important outcome of HT – this is closely linked to quality of life

A recognition? We cannot afford not to measure the outcomes of HT on our patients, because We owe it to our patients We may struggle to justify our interventions +/- the expense of HT without any concrete evidence of their outcome Although we’d all love a 1-2 page outcome measure, this is not realistic

A suggestion The outcomes we aim for and measure with our patients should at least be Specific Measurable Achievable Realistic Timely The outcome measures we use should be valid, reliable and responsive to change

References Debuse D, Gibb C, Chandler C (2009) Debuse D, Chandler C, Gibb C (2005)