75 Occupational Therapy

7/23/2019 75 Occupational Therapy

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The Role of t heOc c upa t ional Therapis t

Raynaud s & Sc leroderm a

Published by

Raynauds & Scleroderma Association

Charity Reg 326306


2/12

Suppor t fo r su f fe re rs

The a ims of the As so cia tion a re to promote a g rea ter a wa renes s of

Raynauds and scleroderma, to raise funds for research and to offer advice

and support to sufferers, their families and friends on the problems of dayto d a y living . On joining the Assoc ia tion, mem be rs rec eive q ua rterly

newsletters giving up-to-date information on research and treatments.

Anne H Mawdsley, MBE, Director of the Raynauds &Scleroderma

Assoc ia tion wo uld like to tha nk Anne J ohns on, Occupa tiona l Therapis t a t

the Roy a l Na tiona l Hos pita l for Rheuma tic Disea ses , NHS Trus t, Ba th, for

her support in the preparation of this publication.

Further information on Health Professional booklets and patient literature isavailable from:

Raynauds & Scleroderma Association112 Crewe Roa d

Alsager

Cheshire

S T7 2J A

Tel: 01270 872776

Fa x: 01270 883556e-ma il: info@ ra yna uds .org .uk

we bs ite: http://ww w.ra yna uds .org .uk

This booklet has been sponsored byan educational grant from

Actelion Pharmaceuticals UK


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The ro le o f the Oc c upa t iona l Therap i s t

This bo oklet ha s be en w ritten a s a brief guide for Occupa tiona l Therapists w ho m a y a t

so me time b e respo nsible for trea ting a person w ith Rayna uds phe nomeno n (RP) or

sc lerod erma. The b oo klet ca n a lso be g iven to p a tients a nd o ther health a nd s ocial care

profes s iona ls for informa tion/ed uca tiona l purpos es .

The importance of employ ing a multidisc iplina ry tea m a pproa ch for people with

Rayna uds o r sc lerod erma , need s to b e empha sized in orde r to provide a

co mprehens ive trea tment prog ra mme. Obta ining other profes sion s pec ific lea flets

publishe d b y the Rayna uds & S cleroderma Ass oc ia tion is reco mmende d to increas e

understa nding of thes e c onditions a nd the role o f the tea m.

Wha t i s Rayna ud s?

Ra yna uds is a co ndition in which the b loo d sup ply to the extremities , usua lly the fing ers

a nd toes but som etimes a lso the ea rs a nd nos e, is interrupted. During a n a tta ck the

fing ers a nd/or toe s g o throug h a proc es s c a lled tripha s ic c olour cha ng e: first they

be co me w hite/de a d looking , sec ond they ma y turn blue a nd then fina lly g o red. The

person may experience considerable pain, a burning feeling, numbness or tingling.

Rayna uds c a n ra nge in se verity

from minor discomfort to the

ons et of ulcers o r even ga ngrene.

Anyone of any age can developRayna uds. C hildren and

teenage rs ca n be a ffected.

P rog ress may be s low o ver a

period of many yea rs. Fema les

are affected nine times more than

ma les . Trig g ers include s tres s

and anxiety, touching cold

ob jects, g oing into a co ld

a tmosphere a nd more

impo rtantly, a ny s lig ht cha ng e in

tempera ture. It is impo rtant for the o cc upa tiona l thera pis t to be a wa re o f thes e trig g ers

in o rde r to e limina te them d uring thera py s es sions .

Raynauds can be subdivided into:

1. Primary Raynauds which occurs spontaneously without any underlying condition

being present (it can be hereditary, in which case it is usually mild).

2. Secondary Raynauds, which is less common and is associated with underlying

diseases such as scleroderma, systemic lupus erythematosus, Sjgrens Syndrome

a nd rheumatoid a rthritis. S eco nda ry RP is m ore serious a nd e a rly a nd a cc ura tedia g nos is is es se ntia l.

1

Photograph showing a Raynauds attack


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S clerod erma , a lso known a s sys temic sc lerosis is a n a uto-immune, g eneralise d diso rder

of the connective tissue. Fibrotic and degenerative changes occur in the skin, synovium

a nd d ig ital arteries a nd c a n a ffect the interna l orga ns including the oes opha g us,

intestinal tract, heart, lungs and kidneys. It affects about 20 per million of the populationper yea r a nd is three times more co mmo n in wom en than me n. The ca use is unknown

and it is neither contagious or inherited.

Any chronic d ise a se ca n be se rious but the s ymptoms ca n vary g rea tly from o ne

ind ividua l to a nother. The e ffec ts o f sc lerod erma ca n rang e from mild to very se vere. The

se riousne ss will depe nd o n wha t parts of the bo dy a re a ffected a nd the extent to w hich

they are properly treated. In its most severe form scleroderma can be fatal.

Ca rdiopulmona ry failure ha s now surpa ss ed rena l fa ilure a s the lead ing ca use of dea th

in pa tients with s clerod erma.

P r e - s c l e r o d e rm a Raynauds phenomenon plus nailfold capillary changes, disease specific circulating anti-

nuclear autoantibodies, (anti-topoisomerase-I, anti-centromere (ACA), or nucleolar), and

dig ital isc hae mic cha nge s.

D i f f u s e c u t a n e o u s SSc ( d c SSc )

Onset of skin c ha ng es (puffy o r hide bo und) within 1 yea r of ons et of Ra yna uds . Trunca l

a nd a cral skin involvement.

P res enc e o f tend on friction rubs aud ible lea thery c rea king due to fibrinous de pos its.

Early and significant incidence of interstitial lung disease, oliguric renal failure, diffusegastrointestinal disease, and myocardial involvement.

Nailfold capillary dilatation and drop out.

Anti-topoisome ras e-I (Sc l-70) a ntibodies (30% of pa tien ts).

L im i t e d c u t a n e o u s SSc ( l c S Sc )

Raynauds for years (occasionally decades).

S kin involvement limited to ha nds , fac e, feet a nd forea rms (a cral).

A sig nifica nt (1015%) la te inc idence o f pulmona ry hype rtension, with or without inters titia l

lung disea se , skin ca lcifica tion, telang iec tas ia e a nd g a strointestina l involvement.

A high inc idenc e of ACA (7080%).

2

What i s sc le rode rm a?

How se r ious i s sc le rode rm a?

Classif icat ion of the System ic Sclerosis subsets


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Limited c utane ous S S c previous ly ca lled the CRES T sy ndrome:

CCa lcinosis (ca lcium d epo sits unde r the skin)

RRaynauds

EEsophageal involvement (American spelling)

SS clerod a ctyly skin of digits b ec ome s thin, shiny a nd lea thery loo king . Fing ers a ndtoes ma y be co me s tiff a nd flexed.

TTela ng iec tas ia the a ppea ra nce of sma ll blood vess els nea r the surfa ce of the s kin.

These ma y b e s een o n the finge rs, p a lms, lips, fa ce, tongue a nd c hest w a ll. Dila ted

nailfold capillary loops, usually without capillary drop out.

Sc l e r o d e rm a s i n e s c l e r o d e rm a

Raynauds + /-

No skin involvement

P res enta tion w ith pulmo na ry fibros is, s clerod erma rena l crisis, c a rdiac org a strointestina l dise a se .

Antinuc lea r a ntibo d ies ma y be present (Anti-topo isom era se-I, (S cl-70) ACA, nucleo la r).

Sc le ro de rm a s i g n s a n d sym p t o m s

Rayna uds pheno menon is usua lly thefirst s ymptom o f sclerod erma a nd ma y

occur many years before other

symptoms . Rayna uds a ffects over 95%

of people with scleroderma (Ref.1). Skin

change is the most common presenting

sign. S kin on the hand s, feet and fa ce

be co mes stiff, tig ht and shiny.

This is due to swelling initia lly a nd then

thickening of the connective tissue

which becomes fibrotic or scarred.The s kin ma y a lso a ppea r dry due to

ob litera tion o f the s eba ceo us g la nds

by the connective tissue. Ulcers, calcinosis and pitting of the skin may also be present.

Microstomia (small mouth) is often a common feature, making eating and oral hygiene a

problem a t times . If the g a strointestina l sy s tem is a ffec ted, there m a y b e difficulties with

swallowing, acid indigestion, malabsorption, diarrhoea or anal incontinence.

Dry mo uth a nd d ry eye s, a s a res ult of Sjg rens s yndrome, a nother a uto-immune

disease related to scleroderma, can be a problem.

Synovitis, myalgia, fatigue and shortness of breath due to heart or lung involvement,ma y further co mplica te the pa tients a bility to c a rry o ut da y to d a y a ctivities .

Photograph showing tight, shiny skin


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Lia iso n with other team memb ers is important. The pa tient ha s usua lly been se en b y the

rheumatologist and possibly a clinical nurse specialist, before reaching the occupational

thera pist. Throug h lia ison, va luable ba ckground informa tion c an be ga thered , a ssisting in

ra pport building no t only with the pa tient but a lso with the team. Occupa tiona l therapists whowork closely with physiotherapists will be able to offer the best therapy input for the patient.

Aim o f t he Occ upa t iona l The rap is t

To work in partnership with th e individual and his or her family,

in order to achieve and maintain opt imum independenc e in act iv it ies of dai ly l iv ing.

Assessm en t , p lann ing a nd eva lua t i on

Assessment of the whole person in order to establish baselines and plan intervention is of

paramount importance. Because of the possible multi system involvement in scleroderma,

thorough assessment of the patient is necessary. Assessment will ascertain the individuals

motivations , a bilities and needs . The us e o f an a ctivities of da ily living a ss essment, or

checklist in conjunction with a validated, standardised, functional assessment is

reco mmende d. The C a nad ian Occupa tiona l Performance Mea sure (Ref.2) is one such

example. Such a tool is useful in planning the individuals personal goals and can be used

a s a n outcome mea sure/eva lua tion of intervention.

The use o f goniometry to measure ra nge of movement in the hand c a n be useful, but

therapists need to bear in mind problems of inter and intra rater reliability, if this method is

used to cha rt hand cha nges o ver time. The use o f a valida ted hand ass essme nt should be

co nside red such a s the Arthritis Hand Function Tes t (Ref.3).

Cha r a c t e r i st i c Hand Change s i n Sy s t em i c Sc l e r o s i s

Loss of MCP flexion

Los s of PIP e xtension

Tuft res orption DIP tuft = DIP pha lanx sho rtening

Tightening o f thumb web

Reduced wrist movement in all planes

(Ref.4)

How ca n the Occ upa t iona l The rap is t he lp?


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Occ upa t iona l t he rapy i n te rven t ion

Raynauds

Ba sed on needs estab lished a t as ses sment and org ans involved. Rayna uds is largelyhelped us ing beha vioura l cha nge s.

Keep i ng Wa rm

Wea ring g loves a nd s ocks a nd a deq uate c lothing to ma inta in bo dy temperature.

Assistive equipment might include use of portable hand warmers or battery heated socks.

Using g loves when g etting items out of the fridg e o r freezer.

Avo i d i ng S t re ss f u l S i tua t i o n s

Identifying stressors and adopting cognitive behavioural strategies to cope.

Use of rela xation and/or biofeedb ack.

Smo k i n g

Advise the patient to give up smoking as this causes vasoconstriction.

I f Hands and Fee t Ge t Co ld

Warm them up gradually.

Occ upa t i o n a l Ha za r d s

Vibration White Finger(VWF) is Raynauds of occupational origin seen in people who usevibrating machine or tools such as chain saws, pneumatic drills, hammers or polishers aspa rt of their job . Career/job a dvice a nd ta sk ana lys is ma y be necess a ry (Ref.5).

Raynaud s i n C h i l d r e n

School play times children may need permission to stay in on cold days. However,this should not be a n excuse to a void e xercise !.

Health and safety precautions should be taken during risky sessions for example in thescience lab or during cooking sessions cold and numb hands could get burned.

Take c a re when s howering or ba thing check the wa ter tempera ture.

Scleroderma

Occ upa tiona l therapy intervention may need to be multifa ce ted. The following sugges tionsa re b ase d on the experience o f occ upa tiona l therapists working in this field. Controlledstudies in ma nag ement of scleroderma a re la cking a nd a re urgently need ed.

Sup p o r t

Support is vital not only from professionals on an ongoing and potentially long term basis,but also from other people with the same condition this is where the Raynauds &S cleroderma Ass oc ia tion ca n help.

Han d Ch a n g e s

In nearly all cases of scleroderma, skin thickening begins on the hands and fingers (Ref.6).

Limitations in rang e o f movement a re a s a result of fibros is of so ft tiss ues : s kin, fascia,musc le, tendon a nd joint ca psule. A common e a rly symptom is sw elling of the ha nds a ndfeet, pa rticularly in the morning .


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I n t e r ve n t i o n m i g h t i n c l u d e :

Hand Therapy (Refs.7 &8) including e xercises to ma inta in ra ng e o f movement, joint

protection e duca tion, a nd s kin ca re. Tiss ue mo biliza tion b y a phys iotherapist would be

complementary and beneficial.

S plinting (Ref.7) few res ea rch studies have been ca rried out into the e ffec tiveness of

res ting or dyna mic splints - further studies a re ne eded .

Thumb web o rthos es as los s o f thumb a bd uction is a

commonly occurring cha nge , and a s thumb function

represents approximately 45%of all hand function, it is

important to maintain lateral pinch. A C-bar type splint

may be useful in achieving this goal (Ref.7).

Care needs to be taken when splinting in terms of

tempera ture of the ma teria l be ing applied to a potentia llynumb ha nd. Written instructions reg a rding wearing

reg ime a nd preca utions should be iss ued to remind the

pa tient to be vig ila nt and take a ppropria te a ction if

a dverse rea ctions occur.

Calcinosis the deposition of chalky deposits under the

skin, often of the dig its but may a lso oc cur around other joints, s uch a s the elbow.

The use o f ring pa dd ing type protection ma y be o ffered, the use o f bi-valved finger

gutters, or provision of Coban self adhesive tape may also offer some protection during

activities. Digital sleeves, such as the type produced by Silipos which are lined with a

med ica l g ra de oil, ca n be helpful in protecting dry and c racked fing ers a nd/or toes .

Finger Ulcers manage with protective padding to decrease pain during activity or by

wearing thin cotton gloves.

Tela ng iec tas ia la se r trea tment or co smetic c amoufla ge ma y help.

E l b ow

A volar based, resting elbow splint could be constructed if elbow extension is compromised.

Edu ca t i o n and Ass i s t i ve Equ i pm en t

Educa tion reg a rding the c ond ition, pa cing o f ac tivities of da ily living , pa in ma nag ement, jointprotection techniq ues, energy c onserva tion and sleep hyg iene, s hould be included to

promo te self-effica cy.

Patients with fixed changes of the hand, wrist or upper limb may need help in the form of

a ss istive eq uipment in order to ma ximize function. Eq uipment may a lso be helpful if other

joints a re involved , such a s those o f the feet. After thoroug h a sse ss ment, identifica tion o f the

mos t helpful items c an be made . The pa tient should be enc ourag ed to try out the eq uipment

in their home environment before making a final decision on its appropriateness. Assistive

equipment can also help with energy conservation and joint protection, for example: the use

of elastic shoelaces or levers for keys and taps. It may also help people to function moresa fely in their home environme nt the us e of a kettle tipper ma y reduce the risk of sca lds . If

the person has oesophageal reflux raising the head of the bed with blocks can help (Ref.9).

Occ upat ional therapy intervention

C-Bar splint


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If an adaptation is not commercially available, the occupational therapist may consider

constructing a one off adaptation themselves. Alternatively, referral to and working in

partnership with local REMAP Panel (Ref.10), may be more appropriate.

Env i r on me n t a l Adap t a t i o n

Home requires lia iso n between hospital and community ba sed occupa tiona l therapists.

Work work ba se d a ss essment ma y be req uired wo rking in pa rtnership with the pa tient,

employer and possibly a Disability Employment Advisor.

Leisure for example ma intena nce of driving skills referra l to a specialis t mobility

centre for assessment regarding car adaptation might be needed.

Fac ia l exercises to ma intain mobility of the fac ia l musc les (Ref.7) a nd co smetics to

ca mouflage tela ngiectas ia ca n help ma inta in a pa tients se lf esteem a nd c onfidenc e.

Exercises can also help with the ability to maintain good oral hygiene, eating and chewing.

The follow ing is a dvice on ma inta ining fac ia l mobility throug h exercise.

Do exercises in front of a mirror. Massage (firm touch) the entire face using small circular

motions with the finger tips, a warm face cloth or vibrator, then massage each specific area

a ga in just before exercising that pa rt. The numb er of repe titions necessa ry to g et ma ximum

mobility, depends upon the individual. One approach, is to do the exercise fast two or three

times as a warm up, and then do five repetitions holding each stretch position to the count of

five. Sustained stretch is more effective for increasing mobility than rapid motions.

Fac i a l Exe r c i se s

Raise the eyebrows a s high a s possible. Return to the normal position.

Bring the eyebrows down a nd tog ether a s hard a s possible a s if frowning . Then ra ise

eyebrows a s high a s pos sible.

Wrinkle the bridge of the nose by raising the upper lip and then frowning (as if smelling

something bad).

Close the eyes very tig ht. Then relea se the sq ueeze slowly a nd raise the eyebrows as hig h

as possible, before opening the eyes.

Flare the nostrils, then narrow the nostrils down, pushing the upper lip out.

Make a n exag gera ted tight wink with each eye s epa ra tely, using the cheek musc les to help

close the eye.

Cover the teeth with the lips, then open the mouth as wide as possible without the teeth

showing.

Close lips and press hard (as if blotting lipstick).

Open the mouth so that the lips a re a s w ide apa rt as possible.

Open the mouth so that the teeth are as fa r apa rt as possible.

P ush the ja w forward to crea te a n under bite (bottom teeth in front of the uppe r teeth).

Make a s wide a g rin a s possible w ithout showing the teeth.

Fac ial Involvement


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Tips for Pat ient s

Occ upa tiona l Therapists a re em ployed in a variety of hea lth and soc ia l ca re s etting s.If yo u would like to be a ss es sed a nd trea ted b y a n Occ upa tiona l Therapist in a

Rheuma tolog y Unit, yo ur Ge neral P ra ctitione r, C ons ultant o r Clinica l Nurse S pec ia list

ma y be a ble to refer you to a suita ble centre. Oc cupa tiona l Therapists w ho a re

co mmunity ba se d a re us ually employed by S oc ia l S ervices . They c a n a dvise you if

necessary, on major adaptations to your home and also give advice regarding eligibility

for grants towa rds such a da ptations . P eople ca n s elf-refer to S oc ia l S ervices

Occ upa tiona l Therapy by co ntac ting their loc a l S oc ia l S ervice s office . Loc a l numbe rs

ca n be found in your telephone bo ok.

Occ upa tiona l Therapists treat the p a tient a s a 'who le pe rso n'. This mea ns , whe na ss ess ing and trea ting you they will ad dress physica l iss ues s uch as hand chang es,

a s w ell a s ps yc holog ica l one s e .g . the stres s o f co ping with sc lerode rma . They w ill a lso

wo rk with yo u to p rob lem solve difficulties in a ll a spects of yo ur life - yo ur se lf-ca re,

leisure and productivity roles, which includes paid or unpaid work and management

around the home.

For ad vice on keeping wa rm, co ntact the Rayna uds & S clerod erma Ass oc ia tion.

The Ass oc ia tion pub lishe s litera ture c onta ining de tails o f g a dg ets a nd he a ting a ids .

Publications on Raynauds, scleroderma and associated conditions are also available

and provide a valuable source of information to patients and health professionals alike.

Hand Su r g e r y

This ma y be a n option for some pa tients in the form of:

Digital sympathectomy

Revas cula risa tion of the fingers

P IP fixation

MCP surge ry to excise bone and crea te a ga p a t which movement ca n occ ur

Carpal tunnel release

Darra chs procedure

Pu rpo se o f hand su r ge r y : (Re f s . 8 & 11)

1. Allevia tion of pa in

2. Prevention of tiss ue loss

3. Preservation of function

4. Cosmesis

Hand surgery


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(1) Isenberg D.A. a nd Black C. (1996) Ra ynauds P henomeno n, S cleroderma and Overla p

S yndromes. In ABC O f Rheuma t o l o g y, London, B .M.J P ublishing G roup.

(2) Law M., Baptiste S., Carswell A., McColl M.A., Polatajjko H., and Pollock N. (1998)Canad i an Occ upa t i o n a l Per f o rman c e Measu r e 3rd ed. Toronto, ON. C .A.O.T.

P ublica tions ACE.

(3) Poo le J .L., G a lleg os M. a nd OLinc S . (2000). Reliability a nd Va lidity of the Arthritis

Hand Function Tes t in Adults with S ys temic S clerosis (Scleroderma ). Ar t h r i t i s Ca re

and Resea r c h . Vol.13, (2), April 2000, 69-73.

(4) Rodna n G .P., J a blonska S . a nd Medsger T. A. J nr. (1979) Clas sifica tion a nd

Nomenclature of Progressive Systemic Sclerosis (Scleroderma).

Rheuma t i c D i s e a se C l i n i c s o f No r t h Am e r i c a 5, 5-13.

(5) Rayna uds &S clerod erma Ass oc ia tion, Vib r a t i on Wh i te F ing e r An

In f o rm a t i on Leaf l e t . www.raynauds.org.uk

(6) Klippel J .H. a nd Dieppe P.A. (1997) P ra c t i c a l Rheuma t o l o g y. London, Mosby.

(7) Melvin J .L.(2000) Exercise a nd Orthotic Trea tment. In Melvin J .L. a nd Ferrell K.M. (eds)

Rheumatological Rehabilitation Series Volume 2. Adu l t Rheuma t i c D i s e a se s,

Bethesda , A.O.T.A. inc. www.aota .org

(8) Melvin J .L. (1995) Sc leroderma (sys temic sclerosis): Treatment o f the Hand. In Hunter

J.M., Mackin E.J. and Callahan A.D. Rehab i l i t a t i o n o f t he Hand : Su rge r y and

The r a p y Volume ll . Mos by, S t. Louis.

(9) Gulin J. and Korn J.H. (1999) Systemic sclerosis: Challenges in diagnosis and

management. The Jou r n a l o f Musc u l o s ke l e t al Med i c i n e . May 1999, 288-300.

(10) REMAP (Reha bilita tion Eng inee ring Movement Advisory Pa nels) ww w.remap.o rg .uk

(11) Melone C.P., McLoughlin J.C. and Beldners (1999) Surgical Management of the Hand

in Scleroderma. Cu r r e n t Op i n i o n i n Rheuma t o l o g y Volume ll (6) 514-520.

References a nd fu r t he r read ing


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Rayna uds &

Scleroderma

Associat ion

Director: Anne H Mawdsley MBE

because cold hands need warm hearts...

P ublished by

Raynauds & Scleroderma Association112 Crewe Road

Alsager

Ches hire S T7 2J A

ema il: info@ ra yna uds .org.uk or info@ sc lerode rma .org.uk

website: www.raynauds.org.uk or www.scleroderma.org.uk

Cha rity Reg No 326306

The a im of the Occ upa tional Therapist is to work in pa rtnership with the individual and his or

her family, in order to achieve and maintain optimum independence in activities of daily living.

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75 Occupational Therapy

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