what can physiotherapy oﬀer? - the ehlers danlos society · 2019-02-11 · what can physiotherapy...

SPONSORED BY Ehlers-Danlos Society Learning Conference, December 2018

What can physiotherapy offer?

Dr Jane Simmonds MACP SFHEA Physiotherapy Lead: London Hypermobility Unit

Post Graduate Lead: Great Ormond Street Ins;tute of Child Health -‐ University College London

Chair: EDS Society Interna;onal Physical Therapy Working


Newly diagnosed

Living with symptoms for a long Dme

Parent of a child or children with HSD or hEDS

Partner or spouse of someone with HSD/ hEDS


Physiotherapy mainstay of treatment…however


Reports have not always been positive

◦  At worst exacerbating symptoms

(Gurley - Green, 2001; Palmer et al., 2016; Bovet et al., 2016)

Why?

◦  Not listening

◦  Not treating the whole person

◦  Boring

◦  Too vigorous, progressing too quickly

◦  Over cautious

◦  Too passive

Physiotherapy mainstay of treatment…however


The InternaDonal EDS Physiotherapy Working Group Prof Dr. Raoul Engelbert, Prof Dr. Birgit Juul-‐Kristensen, Dr. Verity Pacey, Dr. Inge de Wandele, Sandy Smeenk, NicoleOa Woinarosky,

Stephanie Sabo, Mark Scheper, Dr. Leslie Russek, Dr Prof. Jane Simmonds


“There are no recipes”

While there are similarities you are all very different…..

You each have different problems

Each of you will bring a unique life history

As such need to be assessed and treated individually…..the

physiotherapist will be looking for the issues specific to you


Evidence Based Medicine


Body Structure and funcDon

IMPAIRMENTS

Unstable joints

Pain

Fa;gue

Balance

Weak

LimitaDons

ACTIVITY

Walking

Running

SiSng

Wri;ng

PARTICIPATION

School

Work

Sport and hobbies

Home

PERSONAL FACTORS

Gender, Age

Self efficacy

ENVIRONMENTAL FACTORS

Family Support

Access

Health CondiDon

HSD/ hEDS

International Classification of Functioning, Disability and Health (WHO)


ASSESSMENT

Use a holistic (bio-psychosocial)approach

Listen

History

Search for the reasons for your problems

Prioritise and plan


GastrointesDnal

Dysautonomia

Psychological

Pain

Urogenital

Neuromusculoskeletal

Severity Scale

Ninis, de Wandele, Simmonds


GastrointesDnal

Dysautonomia

FaDgue

Psychological

Urogenital


Symptom Severity Profile

Ninis, de Wandele, Simmonds Mast Cell

Pain


Clinically reasoned, goal directed functional restoration programmes

•  Education – condition, joint protection, pain, fatigue, pacing

•  Multidisciplinary team

•  Adaptations / adjustments school, home and work

•  Splinting, orthotics

•  Graded exercise interventions incorporating motor control theory (Faigenbaum 2009;10; Garber et al., 2011; Smidt, 2013)

Englelbert R (2017) The evidence- based rationale for physical therapy of children, adolescents and adults with Joint Hypermobility Syndrome/ Ehlers Danlos Syndrome - Hypermobility type. American Journal of Medical

Genetics. Part C Medical Seminars

MANAGEMENT

Empowering You to feel in control of your condi;on

NOT the condi;on controlling you


Simple/acute Complex Intermediate

STRATIFIED MANAGEMENT

Keer & Simmonds (2011)

SIMPLE/ EARLY

Episode of acute musculoskeletal injury, sprains,

subluxa;ons, disloca;on,

minimal or no trauma

overuse, misuse*

SIMPLE/ EARLY

Rest, Ice, Compression, Eleva;on

electrotherapy, tape, support, reassurance, exercise, ;me

educaDon -‐ prevenDon


Increased vulnerability of ;ssues to injury (Pacey 2010, Tobias 2013)

-‐ repe;;ve ac;vi;es (Acususo-‐Diaz et al 1993

-‐ sustained postures (Larsson et al 1993, 1995)

SIMPLE/ EARLY




overuse, misuse*

SIMPLE/ EARLY






MANAGEMENT

6 week graduated exercise intervenDon * Improvements in pain – child and parent perspec;ves

•  Parental global assessment reported beOer outcomes with a targeted mo;on control approach

Factors to consider – problems with recruitment and reten;on in this study


MANAGEMENT

8 week graduated exercise intervenDon * Improvements in knee strength and pain in both groups

•  Parent reported -‐ psychological health, self esteem , mental health and behaviour was significantly

different in favour of exercising into the hypermobile range


8 week graduated propriocepDon, balance and plyometric training

* Reduced knee pain and improved propriocep;on

MANAGEMENT


Women with BJHS were randomly allocated into exercise (n = 20) and control

(n = 18) groups. Lumbar spinal stabiliza;on exercise program was carried out 3

days a week for 8 weeks

Back and knee pain reduced, improvement in balance and trunk muscle endurance

MANAGEMENT

INTERMEDIATE

Coordina;on problems

Recurrent episodes of pain, series of episodes at different

sites, subluxa;on/disloca;on, Headache, Fa;gue, Fear

decondi;oning/disability

+/-‐ PoTS, GI, urogynacology

SIMPLE/ EARLY




overuse, misuse*

SIMPLE/ EARLY





Good

at

ballet

dizzy

Sad

Great

athlete

Can’t stand

up

Feel sick

Allergies

Writing problems

Reduced

aOendance at

school

clicking

off work

DislocaDons


Dizziness, lightheaded, headache,

brain fog, pre/syncope, temp

intolerance

Palpita;ons, SOB

Bladder pain, frequency,

prolapse, incon;nence,

slow transit cons;pa;on

Prolapse, evacuatory

dysfunc;on, incon;nence

FATIGUE, ANXIETY, FEAR


Subjec've Assessment

Listen carefully

Unrecognised

Poorly Managed

Listen carefully…….

Explore expectations with young person and parents

Identify problems – prioritise

•  Pain – local/ general/ acute/ chronic (sensitization)

•  Joint instability – subluxations, dislocations, clicking

•  Fatigue – sleep, fluid, diet

•  Anxiety - Low mood/ depression

•  Gastrointestinal dysmotility

•  Dysautonomia – Postural Tachycardia Syndrome (POTS)

Explore impact

•  Physical activity/ Sport/ Hobbies Physical Education

•  Home (self care, chores, dressing), Social, School (writing), General health

Family history and thorough developmental history **

What do you hope to

get from the session?

Informa'on? Pain

relief? Exercises?

WHAT MATTERS MOST


Listen carefully

Unrecognised

Poorly Managed

What has gone well?

What has not gone well ?











Explore impact






Listen carefully

Unrecognised

Poorly Managed










Explore impact




Who else in the

MDT needs to

be involved

OccupaDonal

Therapy

School

Podiatry

Psychology


Objec;ve

Careful active and passive joint range and muscle length

Functional assessment **

Observe dressing undressing

Posture and gait – compensatory patterns

Sit to stand/ squat – gluteal, quadriceps

Single leg dip

Heel raise – tibialis posterior

Balance – Single leg / Star Excursion Balance test - Y Balance Test / Hop/ Jump

Repositioning tests – proprioception/ kinaesthetic

Strength/ activation (careful testing* - through range) ** functional – sit to stand

Grip strength – crude test

Hand writing

Test for POTS (standing test /refer on) – quiet standing test

Observe

Carefully


Objective

Careful active and passive joint range and muscle length

Functional assessment **

Observe dressing undressing

Posture and gait – compensatory patterns

Sit to stand/ squat – gluteal, quadriceps

Single leg dip

Heel raise – tibialis posterior

Balance – Single leg / Star Excursion Balance test - Y Balance Test / Hop/ Jump

Repositioning tests – proprioception/ kinaesthetic

Strength/ activation (careful testing* - through range) ** functional – sit to stand

Grip strength – crude test

Hand writing

Test for POTS (standing test /refer on) – quiet standing test


Autonomic Testing – Tilt Table

Time Time

Normal POTS

Clinical tests

36 hour blood pressure and heart rate

monitoring with diary (Mathias et al., 2011)

10 minute quite standing test – heart rate and

blood pressure monitoring (Raj 2013)

INTERMEDIATE






SIMPLE/ EARLY




overuse, misuse*

SIMPLE/ EARLY




INTERMEDIATE

Modified/ Adapted,

Holis;c, Mul;disciplinary team

reassurance, educa;on,

Cogni;ve approaches CBT, MI

Func;onal restora;on

Self management



EDS - HSD/ hEDS can be very complex

Therefore, you need to realise …….

1. Your physiotherapist will not be able to treat everything in one go

2. Your condition will not change overnight

3. Other professionals may be needed

4. The EDS, hEDS/HSD is not going away

5.  However, you are likely to see a change in strength, stability, fitness, function

and self confidence and then later your perceptions of pain and fatigue may well

change

6. Although not all of the approaches have been tested with research in EDS

hEDS/HSD populations, expert clinicians have recommended their use when

appropriate


What can physiotherapy offer to help improve your life?

Get ready to change

Those who are ready to

engage and commit likely to

have a beXer outcome


Importance of Goal Setting

Attaining goals is closely linked to patient satisfaction and patient

outcomes

Goals need to be established

Define the time frames

All goals should be progressive and achievable

‘A goal not written down is a wish’

Identify barriers – and help people over come the barriers

Jack et al (2008); Slosar et al (2000) Spine. 15; 25, 6, 722 -‐6


Readiness Stages of Change


Ambivalence

Commitment

Precontemplation

Contemplation

Preparation Action

Maintenance


Pain

Fear of

injury

FaDgue

Simmonds et al., 2017

Discuss your fears and barriers

Make plan together about how

to tackle set backs and injuries


Trust, Individual Plan, Partnership and the TherapeuDc Alliance Crucial

“My physiotherapist has specialised in hypermobility syndrome and has listened to what I have said

concerning my body and what problems I have and helped construct me an exercise programme designed

specifically to try and combat my worst problems – he has also listened when I’ve told him I am having

problems with some exercises and told me when to stop them or has altered them for me so I can do

them. So yes a great relaDonship of trust and understanding of both me as a person and my physical

condiDon is what has made it work”


•  Education – anatomy, healing, joint protection, non-pharmacological POTS management advice

•  Teach you about acute management – dislocations/subluxations

•  Restore function – working towards realistic shared goals

•  Address weakness – if weak, try to strengthen it

Start low and go slow •  Address tightness – if muscles are short/tight, try to lengthen them

•  Address compensatory movement patterns

Practice and awareness

•  Address poor proprioception – movement and practice

•  Improve fitness – graduated exercise •  Manage pain and fatigue – lifestyle advice, sleep and PACING

What can physiotherapy offer to help improve your life?

Dislocation

Subluxation

plan

PosiDon the joint comfortably

Breath – Relax

Wait, Wait, Wait

Use distracDon – music, TV, massage

Do your usual thing…

Ice, analgesia

Support for a few days

Gradually get moving

White –blue – completely numb – A/E

Stanmore – Plan Helen Cohen


Movement Control – Graded Strength

•  Start in non weight bearing, pain-free positions

•  Use closed chain positions – isometric, concentric, eccentric

•  Biofeedback

•  Gradually moving to open chain

•  Increase intensity

Keer & Simmonds 2011

INTERMEDIATE






SIMPLE/ EARLY




overuse, misuse*

SIMPLE/ EARLY




INTERMEDIATE

Modified/ Adapted,

Holis;c, Mul;disciplinary team

reassurance, educa;on,

Cogni;ve approaches CBT, MI

Func;onal restora;on

Self management

COMPLEX LONG TERM Chronic, longstanding, severe, unremiSng pain with profound

decondi;oning/ comorbidi;es, disability (Rombaut 2011; Scheper,

2016)

COMPLEX/ LONG TERM Mul; disciplinary in pa;ent management programme using

cogni;ve behavioural approaches

(Bathen et al, 2014)



GastrointesDnal

Dysautonomia

FaDgue

Psychological

Pain

Urogenital

Mast Cell


Work with psychologists /

Counseling – CBT/ hypnosis

Monitor fluid, Salt, Medica;ons

Graded cardiovascular / lower limb

exercise

Monitor medica;ons/low

carbohydrates/ FODMAP

Medica;ons

Women’s health

Provide sleep hygiene and informa;on on

pacing, fluids, Vit D, Iron checks

Monitor, Diet

Medica;ons

Provide pain

educa;on,

pacing, TENS,

acupuncture,

manual therapy

Educa;on/graduated motor

control/ strength/ endurance/

splints/tape/ adapta;ons/

manual therapy/ podiatry/

occupa;onal Therapy


IntervenDon: 6-‐8 Week interven;on Physiotherapy, Occupa;onal Therapy and Psychology: 3-‐4 hours per day

Outcome measures: included numeric ra;ng scale pain scores, the Bath Adolescent Pain Ques;onnaire,

and the Bath Adolescent Pain Parent Impact Ques;onnaire.

Results: Improvements in pain, depression, general anxiety, pain-‐related anxiety, social func;oning, and physical

func;oning (P < .05) The pa;ents’ parents showed significant improvements in depression, anxiety,

catastrophic thinking , self-‐blame and helplessness, leisure func;oning, and parental behaviour (P < .05).


IntervenDon: 2.5 Week interven;on Physiotherapy and Psychology, educa;on, home programme 3

months, readmission for 4 days

Outcome measures: Canadian occupa;onal Performance Measure (COPM), Fear Movement,

Func;onal strength and endurance, balance and pain

Results: Significant improvements in all domains


Remember……. Go to the physiotherapist with realistic expectations be ready to change

Help guide your treatment – provide a clear, concise history and a problem

list. This gives both you and your physiotherapist something to work towards

Work with your physiotherapist to set functional realistic goals

Work as a team…..listen and follow the advice your physiotherapist gives

you …… then give feedback at the next session as to whether it is helping. If it

is not helping - adjustment

Stay hopeful and calm and try not to get frustrated – be a patient patient

EDS, hEDS and HSD are lifelong conditions, but with good careful management

and the application of key principles the impact on your life can be greatly

reduced.

The InternaDonal EDS Physiotherapy Working Group

Prof Raoul Engelbert, Prof Birgit Juul-‐Kristensen, Dr. Verity Pacey, Dr. Inge de Wandele, Sandy Smeenk, NicoleOa Woinarosky, Stephanie

Sabo, Mark Scheper, Dr. Leslie Russek, Dr Caroline Alexander, Prof Shea Pallmer, Dr Lies Rombaut, Prof Leslie Nicholson, Dr Susan

Morris, Robyn HickmoO, Dr Jan Dommerholt, Kevin Muldowney, Dr Jane Simmonds,

Acknowledgements


THANK YOU

what can physiotherapy oﬀer? - the ehlers danlos society · 2019-02-11 · what can physiotherapy...

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