Comprehensive Care in

Haemophilia: Physiotherapists
perspective

Debbie Thompson

Outline
What is comprehensive care for haemophilia
and why is it important?
What role Physiotherapy should play
How well do we achieve the aim of providing
comprehensive care?
What challenges and opportunities there are
for the future

SA Health

Themes in recent literature:

Comprehensive care in
haemophilia

Who?
PWH + family
Complex and rare condition

What?
Medical + psychosocial
Health promotion
Responsive to broad
determinants of health

By whom?
Checklist of health
professionals
Specialist skills
Collaborative (families and CC
team)
Patient organisations

How care is delivered?

Accessible
Patient-focused
Multidisciplinary
Evidence-based
Home-based/ in own community
Effective dissemination of
knowledge
Cost effectiveness/ cost-utility/ costbenefit
Outcomes audited
How health services are
structured?
Avoid duplication and fragmentation
Intersectoral cooperation
Information integration
Vertical integration into communities
Appropriate technology
Regional networks

SA Health

Literature: Benefits of
comprehensive care
> Comprehensive care model
Better survival
Less risk associated with accidents/surgery
More effective utilisation of healthcare
resources
Reducing need for services (better treatment,
quality of life)

> No literature to quantify Physiotherapy

contribution to Comprehensive Care in
haemophilia

SA Health

Literature: Recommendations for

Physiotherapy
> Colvin et al
> A Comprehensive Care Centre should have
available a dedicated physiotherapy service
> A Haemophilia Treatment Centre should have
access to the services of a local PT with an
awareness of haemophilia patients
> Smaller centres should have PT support from a
CCC
> The Haemophilia Alliance (UK)
> Haemophilia Centre PT offers a range of acute
treatments for patients with active bleeds and is
responsible for monitoring joint function and
improving joints and muscles on a long term
basis

SA Health

Literature: Recommendations
Applicable to Physiotherapy
>
>
>
>
>
>

Specialist education of PTs

Research
Health promotion
Education of PWH and their families
Maintain data registries
National/regional decision making
partnerships

SA Health

Value of a Physiotherapist in the

Comprehensive Care Team
> Unique knowledge
Musculoskeletal
anatomy
Pathology/
pathophysiology
Biomechanics
Exercise physiology
Etc....

> Clinical assessment

Joint health
Strength
Coordination
Proprioception
Function

> Accurate diagnosis

> Long term monitoring
joint health
> Prevention of bleeds
Improve joint and
muscle function
Maintain healthy BW
Sport selection

> Education
> Treatment of acute
bleeds
> Pre/post surgical
rehab
SA Health

Comprehensive care in Australia

and New Zealand
> Results collated from surveys to
Australian and New Zealand Haemophilia
Physiotherapists (12 surveys)
Maureen Spilsbury

> Similar survey completed in 2005 (16

surveys)
Wendy Poulsen and Rebecca Dalzell

SA Health

Results: Caseload & staffing

>
>
>
>

2009
Paediatric 50%
Adult 42%
Both 8%

> Exclusively
haemophilia? Yes: 0%

>
>
>
>

2005
Paediatric 53%
Adult 40%
Both 7%

> Exclusively
haemophilia? 0%
> 2 dedicated time

SA Health

Results: Services provided &

referrals
>
>
>
>
>
>

2009
Hydrotherapy classes? Yes: 33%
Outreach? Yes: 17%
Transition from paeds to adults? Yes: 25%
Group exercise classes? Yes 8%
Able to refer to orthotic/prosthetic/ podiatry
services? Yes: 75%

SA Health

Results: Haemophilia centre

activities
> 2009
> Attend haemophilia
clinics:

Yes: 58%

> Attend haemophilia

centre team meetings:

Yes: 42%

> 2005
> Attend haemophilia
clinics:

Yes 67%

> Attend haemophilia

centre team meetings:

Yes 46%

> Haemophilia centre

planning days

Yes: 33%

SA Health

Results: other activities

> 2009
> Attendance at meetings across paeds
and adult services? Yes: 33%
> State haemophilia foundation activities?
Yes: 50%
> Communication with state haemophilia
foundation staff? Yes: 42%

SA Health

Challenges now and into the

future
> Lack of dedicated Haemophilia Physiotherapy time

Difficult to provide comprehensive service to pts

Acute needs vs long term needs
Lack of time for other service development activities, research

> Lack of integration of PTs into Haemophilia clinics

> Skill base of PTs in treatment of haemophilia

Small patient group

Better outcomes
Lack of dedicated time for haemophilia
High turnover of staff

> Access

Impact of home treatment

Inequities nationally

> Lack of involvement of PTs in centre-based, statewide

and national planning activities
> Research

Clinical effectiveness
Cost effectiveness

SA Health

Opportunities for Advancement of

Comprehensive Care PT
> Treatment of patients

Acute management
Joint screening, early intervention
Physical activity, participation
Health promotion, education
Evidence-based
Patient-focused
Maintain skill base

> Multidisciplinary approach

Active involvement in clinics

Contribution to team decision making
Link to local community, outreach, support to rural health professionals

> Involvement in research

Clinical effectiveness
Cost effectiveness

> Involvement in decision making

Involvement in service development activities at HTC

Involvement in state, national haemophilia organisations
Advocacy for PT profession

SA Health