Physiotherapy 93 (2007) 212217

A survey of physiotherapists involved in paediatric lower

limb amputee rehabilitation in the British Isles
Judith Treby a, , Eleanor Main a,b
a

Physiotherapy Department, Great Ormond Street Hospital for Children NHS Trust, Great Ormond Street, London WC1N 3JH, UK
b Portex Anaesthesia, Intensive Therapy, Respiratory Medicine and Respiratory Physiology,
Institute of Child Health, 30 Guildford Street, London WC1N 1EH, UK

Abstract
Objectives Children require extensive rehabilitation following lower limb amputation and there are few reports describing this rehabilitation
process. A survey to assess opinions, practice and caseloads amongst physiotherapists involved with paediatric amputee rehabilitation in the
British Isles was therefore undertaken.
Design A 17-item structured telephone survey was developed to include the main aspects of physiotherapy rehabilitation of children following
lower limb amputation. Physiotherapists working in paediatrics and/or amputee rehabilitation in a range of acute, outpatient and community
settings were surveyed.
Results Data were collected between November 2001 and October 2002. Physiotherapists from 70 centres were contacted, and 52 treated
paediatric lower limb amputees. A variety of causes of amputation were managed. All physiotherapists commented that they saw very few
paediatric patients. No centre had protocols in place for any stage of management. In all geographical areas, rehabilitation was available
throughout recovery for all causes of lower limb amputation. Core elements of rehabilitation were similar; however, additional elements
differed between centres.
Conclusions This survey indicates that the small population of children with lower limb amputation has access to rehabilitation throughout
their recovery. However, there is variation in the provision of physiotherapy rehabilitation services throughout the British Isles. Redesigning
physiotherapy rehabilitation services for paediatric lower limb amputees, and formalisation of cross-speciality links between paediatric and
amputee physiotherapists may help to address these issues and better equip these children for future function.
2006 Chartered Society of Physiotherapy. Published by Elsevier Ltd. All rights reserved.
Keywords: Paediatric; Lower limb; Amputation; Rehabilitation

Introduction
Lower limb amputation in children can be the consequence
of diverse clinical circumstances including congenital limb
deformity [1,2], meningococcal septicaemia [3], malignancy
[4] or trauma [5]. Between April 2001 and March 2002 in the
UK, there were 36 new lower limb amputations in children
aged 016 years, 5 of which were bilateral procedures, and 24
registered cases of congenital absence of the lower limb [6].
This cohort of children requires extensive rehabilitation
following amputation to equip them for optimal function
Corresponding author at: Physiotherapy Department, Child Development Centre, Hill Rise, Kempston, Bedford MK42 7EB, UK.
Tel.: +44 1234 310278; fax: +44 1234 310277.
E-mail address: Judith.Treby@bedfordshirepct.nhs.uk (J. Treby).

into adult life. Whilst children are often initially quicker to

mobilise than adults, they have complex and specific rehabilitation needs that are distinguishable from adults. Different
underlying medical conditions and the fact that they potentially have a long life ahead of them with changing needs
related to growth and development will influence their rehabilitation. Rehabilitation for young children is often based on
therapy through play, taking account of age and comprehension. Older children may need or desire skills at a higher level,
e.g. in competitive sport, and this will necessitate a flexible
and individually tailored rehabilitation programme.
Published literature specific to paediatric lower limb
amputation relates to the characteristics of the population [7],
phantom limb pain and its influence upon rehabilitation [8,9],
gait analysis in established amputees [10], and comparison

0031-9406/$ see front matter 2006 Chartered Society of Physiotherapy. Published by Elsevier Ltd. All rights reserved.
doi:10.1016/j.physio.2006.08.007

J. Treby, E. Main / Physiotherapy 93 (2007) 212217

with other treatment methods [1]. Little relates specifically

to the best environment for, or requirements of, the rehabilitation process for children. Neither does much literature
evaluate progress during or outcomes of rehabilitation, e.g.
by gait analysis and/or balance measures, or assess quality of
life during and/or after rehabilitation. In comparison, there
is a body of literature relating to rehabilitation and outcomes
for adults with lower limb amputation, and guidelines based
on this literature have been published [11]. Children with
amputation(s) are seen as a minority within a specialist adult
centre/service and there is usually no specific specialist care
provided for them.
Guidelines for best practice are becoming increasingly important both within the physiotherapy profession
and the National Health Service (NHS) as a whole.
Within physiotherapy specialist interest groups for paediatrics [Association of Paediatric Chartered Physiotherapists
(APCP)] and amputee rehabilitation [British Association of
Chartered Physiotherapists in Amputee Rehabilitation (BACPAR)], there is no clear consensus on the best practice,
environment and therapist(s) for rehabilitation of children following lower limb amputation and development of guidelines
for their rehabilitation. Communication with physiotherapy
colleagues suggested substantial variation in paediatric lower
limb amputee rehabilitation practice.
A survey to assess opinions, practice and caseloads
amongst physiotherapists working in a range of acute, community and outpatient settings within paediatrics and/or
amputee rehabilitation in the British Isles was therefore
undertaken.

Methods
A 17-item structured telephone survey questionnaire
was developed to assess opinions, practice and caseloads
amongst physiotherapists working with paediatric lower limb
amputees (Appendix A). Items in the questionnaire covered
all aspects of physiotherapy rehabilitation for children following lower limb amputation. Multiple response options
were used and comments were invited to increase the depth of
information gained and form a wider indication of opinions
and practice. The first author (JT) conducted all the telephone
interviews. This methodology was chosen to maximise the
response rate and provide an opportunity for respondents to
expand upon answers given, improving the quality and depth
of information gained.
Physiotherapists from England, Wales, Scotland, Northern Ireland and Eire were surveyed. Acute childrens
hospitals, orthopaedic hospitals or centres, limb fitting centres and disablement services centres were selected from
lists of centres held by Great Ormond Street Hospital and
the Limbless Association. These lists are comprehensive
and cover all geographic regions of the British Isles. It is
considered that the sample was broadly representative of
physiotherapy practice with paediatric lower limb amputees

213

in the British Isles. Paediatric community services and

child development centres were not primarily recruited, and
those that were ultimately included in the analysis were
those recommended by primary respondents as centres that
specifically managed paediatric lower limb amputees in that
geographic area.
The local research ethics committee deemed that this
project was primarily an audit exercise aiming to gain information about the current status of physiotherapy practice
in paediatric lower limb amputee rehabilitation. As such, it
did not require full ethical review or opinion from an NHS
Research Ethics Committee.
The questionnaire was piloted amongst the first five
respondents, chosen at random from a variety of clinical
areas and geographic locations. Each took approximately
30 minutes to complete and included discussion around perceptions of important issues in this clinical area, as well as
feedback regarding the content and clarity of the survey questions. Modifications were made to the wording, phrasing or
order of some of the questions to improve clarity and reduce
ambiguity. If several of the pilot respondents gave a particular answer for other in a question with options, this was
added to the options listed. Questions where opinions and/or
comments were given were expanded to include an additional
comments section. The responses from the pilot interviews
were included in the results, adjusted where necessary to the
format of the final questionnaire.
Physiotherapists were contacted by telephone and the aims
of the survey were explained to them. If it was convenient to
do so and time allowed, the final questionnaire (which took
approximately 15 minutes to complete) was administered
immediately. If it was not convenient or time was limited, a
convenient alternative time was arranged. Each questionnaire
was administered and completed within a single telephone
call. If more than one physiotherapist in the same location
managed paediatric lower limb amputees, the questions were
asked of the physiotherapist with whom the initial contact
was made. Each questionnaire therefore represents the opinions and practice of one physiotherapist. Others present were
consulted by some respondents as they felt appropriate, for
instance other members of the multi-disciplinary team or a
colleague with experience or expertise in a particular area.
The data were analysed descriptively using SPSS Version
11. Percentages and/or proportions were calculated for all
the constituent parts of each question and presented in an
appropriate format. Additional comments were recorded and
presented in conjunction with the numerical results.

Results
Data were collected between November 2001 and
October 2002. Seventy centres in the British Isles were
contacted, of which 22 were childrens hospitals, seven were
orthopaedic centres, 39 were limb fitting centres or disablement services centres, and two were community-based

214

J. Treby, E. Main / Physiotherapy 93 (2007) 212217

Fig. 1. Workplace and involvement of respondents.

services. Physiotherapists from 52 centres treated paediatric

lower limb amputees (Fig. 1) and all of these completed the
questionnaire, giving a response rate of 100%. The results
presented represent the information gained from these 52
physiotherapists.
Caseload
Physiotherapists often treated children with differing
causes of lower limb amputation (Table 1). While most
physiotherapists had treated children with the most common
causes of lower limb amputation at some time, all commented
that they see very few paediatric lower limb amputees each
year, and those involved in ongoing care of these children did
not have many on their caseload.
Pre-operative management
The majority of physiotherapists (32/52, 62%) reported
that a limb fitting centre or disablement services centre was
involved with the child and family pre-operatively, and 27
of these 32 respondents said that it was a multi-disciplinary
team input whenever possible. Two physiotherapists comTable 1
Causes of paediatric lower limb amputation managed by physiotherapists
Cause of amputation

Number of physiotherapists

Congenital limb deformity

Trauma
Meningococcal septicaemia
Malignancy
Othera

45
41
43
42
4

a Other causes treated were diabetes, osteomyelitis, non-union of fracture

(in a child with neurofibromatosis), ulceration (in a child with spina bifida)
and necrotising fasciitis.

mented that the whole family meet their multi-disciplinary

team whenever possible, and two other physiotherapists commented that they have other children and families available
to talk to the child and/or their family if requested. Only 18
physiotherapists felt that the limb fitting centre/disablement
services centre consultant or team always had an influence
upon decisions about surgery; the other 14 respondents said
that this influence varied due to time constraints, professional
availability, and distances from and attitudes of referring hospitals.
Post-operative management
Wound dressing
Just over half of the physiotherapy respondents (29/52,
56%) were familiar with wound dressings used in their centre (Table 2). No centre had a dressing protocol in place for
paediatric patients and no centre left wounds open.
The reasons cited for variation in the type of dressing used
were surgeons preference, childs health, i.e. how medically
Table 2
Types of dressing used following lower limb amputation
Type of dressing

In theatrea

Healing phasea

Stump bandage
Bandage
Compression dressing
Plaster of Paris
Mepore/dry dressing
Tubinett or Tubifast
Juzo stocking
Tubigrip
Low profile (not specific)

5
11
8
5
3
0
0
0
0

0
9
0
1
12
8
18
1
1

a Twenty nine physiotherapists responded, of whom 25 reported that more

than one type of dressing was used.

J. Treby, E. Main / Physiotherapy 93 (2007) 212217

Table 3
Elements of initial rehabilitation following lower limb amputation
Exercise or activity

Number of
physiotherapists
(n = 35)

Bed exercisesa
Transfer practicea
Mobility (of any form, including wheelchair)a
Upper limb exercises
Stretches
Otherb

26
28
35
6
7
7

Elements asked for directly.

Other elements of initial rehabilitation given were positioning and contracture prevention, education and advice for child and family, and chest care
if needed.
b

stable they were and the condition of their skin around the
wound, cause of amputation, method of wound closure (clips,
staples or stitches) and type of flap formed. No physiotherapist felt that they had noticed a difference in stump formation
between the dressing types. This was based on a visual assessment of the shape of the stump and oedema control within it
rather than an objective measure.
Rehabilitation
Two-thirds of physiotherapists (35/52, 67%), mainly from
acute specialities, were involved in initial rehabilitation. Of
these, 20 treated children as inpatients and 15 did not; the latter 15 physiotherapists provided advice to those who treated
children as inpatients. Some physiotherapists commented
that rehabilitation may be delayed when the surgery is not
planned, e.g. an emergency amputation following trauma;
when the child has other medical conditions, e.g. meningococcal septicaemia; and/or is having additional treatment,
e.g. chemotherapy. The components of early physiotherapy
rehabilitation are shown in Table 3.
Wheelchair mobility was taught by various professionals:
physiotherapists (11/35, 31%), occupational therapists (6/35,
17%) or any member of the multi-disciplinary team who was
available and/or who knew the child well (18/35, 51%).
Physiotherapists from 41 centres (79%) were involved
in ongoing outpatient rehabilitation for children following
lower limb amputation (Table 4).
Pre-prosthetic rehabilitation included general fitness training, use of early walking aids, hydrotherapy, balance work,

215

and volume reduction and oedema control for the stump. The
method of pre-prosthetic mobilisation varied between physiotherapists. Non-ambulatory mobility was encouraged by 6
of 41 (15%) physiotherapists for safety reasons, to prevent
falls and for oedema prevention. Ambulatory mobility was
encouraged by 13 of 41 (32%) physiotherapists for function,
to improve strength and balance, to give independence and to
enhance quality of life. Both types of mobility were promoted
by 22 of the 41 (54%) physiotherapists as most children will
try to hop naturally, and so it was considered safer to teach
them to do so using walking aids. However, the importance of
rest and elevation to minimise problems with stump oedema
was also recognised and encouraged. Only four physiotherapists had subjectively noticed a difference in stump formation
between those children who hopped and those who did not,
with the latter having less stump oedema. They also felt that
stump oedema in children who hopped had caused problems
with prosthetic fitting later in their rehabilitation.
Prosthetic rehabilitation included gait re-education as well
as continued work on general fitness, balance and stump
care.
In each geographic area, access to rehabilitation was available to every child throughout recovery from lower limb
amputation. However, the service provision and type of rehabilitation differed in each area. None of the physiotherapists
who completed the survey had guidelines or protocols for the
management of children with lower limb amputation in place.
Physiotherapists from limb fitting centres, disablement services centres and childrens hospitals commented that they
gave advice, as needed, to local therapists treating children
living outside the geographic area covered by their service.
Many physiotherapists also said that children remained on
their caseload until they reach 1618 years of age, with annual
reviews of their progress and needs, as well as open access
to the service as required.

Discussion
This survey indicates that for the small population of
children with lower limb amputation in the British Isles,
there is variation in rehabilitation practice and service provision. One of the challenges currently facing children with
amputation(s) in the British Isles is the inconsistency of
physiotherapy rehabilitation services. Immediately following surgery, adults with lower limb amputation are treated

Table 4
Type of outpatient physiotherapy rehabilitation offered to children following lower limb amputation
Place of work

Input throughout

Prosthetic only

No outpatient input

Childrens hospital
Orthopaedic centre
Limb fitting centre or disablement services centre
Community

7
0
11
0

Pre-prosthetic only
7
4
0
0

0
0
10
2

1
0
10
0

Total

18

11

12

11

216

J. Treby, E. Main / Physiotherapy 93 (2007) 212217

by a specialist amputee physiotherapist. Conversely, children

tend to be managed either by a paediatric physiotherapist or
an amputee physiotherapist. Once discharged from hospital,
adults will typically attend a specialist limb fitting centre or
disablement services centre and be managed by a physiotherapist expert in amputee rehabilitation. In general, children are
rehabilitated in the community by a paediatric physiotherapist who is skilled at working with children but may not have
expert knowledge in amputee rehabilitation. Rarely is a child
fortunate enough to be treated by a physiotherapist with specialist paediatric and amputee skills. To facilitate the best
possible rehabilitation and long-term functional outcomes
for children with lower limb amputation, the expert skills of
both specialist paediatric and amputee physiotherapists are
needed.
The National Service Framework for children aims to promote services which are designed and delivered around the
needs of children and families using those services not around
the needs of the organisations [12]. To achieve optimal services for children with amputation(s), there is an argument
for development of specialist paediatric amputee rehabilitation and limb fitting services/centres and specialist paediatric
amputee therapists. However, given the small population of
users, it would not be feasible to establish more than a few
such services in the British Isles. Families would potentially
need to travel large distances to access these services, and
rehabilitation work within the childs usual environment(s)
would be very difficult to achieve.
Cross-speciality joint working between paediatric and
amputee physiotherapists would perhaps better echo and
achieve the aims of the National Service Framework for
children with lower limb amputation compared with current practice. Cross-speciality collaborative working would
ensure that their rehabilitation is not limited to either the
predominantly adult environment of a limb fitting centre or
the paediatric community setting (including their home and
school) but is in the most appropriate environment for the
child at any given time.
Guidelines for best practice and protocols for care aim
to promote a gold standard of care for a group of patients.
None of the physiotherapists who completed the survey
had protocols for the management of children with lower
limb amputation in place. The descriptive data gained from
the survey contribute to the information available about the
management of these children, and may be beneficial to physiotherapists seeking to establish guidelines for practice in
this area. However, as reflected in this survey, children have
amputations for a variety of clinical reasons and are very often
complex clinical cases, requiring highly individualised care
to meet their needs. Development of guidelines and protocols for rehabilitation of children with lower limb amputation
should therefore promote individually tailored care within a
well-developed, expert service whilst avoiding prescriptive
recommendations.
This survey has some limitations. Using a telephone survey increased the response rate and amount of detailed

information gained, particularly relating to opinions and practice. However, it was a survey purely of physiotherapists and
does not provide comprehensive multi-disciplinary information relating to the management of children with lower limb
amputation. No information was gained from parents, carers
or children with lower limb amputation, and therefore their
opinions are not represented.
When completing the survey, the use of objective outcome
measures with children following lower limb amputation was
not addressed directly. However, when discussing rehabilitation, none of the physiotherapists indicated that they use such
measures. Whilst measures of balance, gait analysis and posture may already be used informally during rehabilitation,
formal use of such objective measures to evaluate progress
during and outcomes of the childs rehabilitation would be
valuable. Quality-of-life measures and objective measures of
function, such as those derived from the International Classification of Functioning, Disability and Health framework,
would also be valuable tools to use with this group of children. In addition, such measures may help inform the process
of guideline development.
It would be valuable to extend the survey to include
other professionals involved in rehabilitation and paediatrics,
plus parents, carers and, where appropriate, children with
lower limb amputation(s). If information from the survey was
intended to inform the development of guidelines, consultation of clinical experts using a Delphi analysis and other
specialist groups such as lower limb amputee athletes would
also be important. Involvement of physiotherapy specialist
interest groups, e.g. BACPAR and APCP, in the development
of future survey(s) would also be beneficial to ensure that key
questions and issues are included.

Conclusion
This survey indicates that the small population of children with lower limb amputation has access to rehabilitation
throughout their recovery. However, there is variation in physiotherapy rehabilitation practice around the British Isles and
a disparity of services for these children. It would appear
therefore that the aims of the National Service Framework
for children are not currently being achieved. Redesigning
physiotherapy rehabilitation services for paediatric lower
limb amputees and formalisation of current informal crossspeciality links and joint working between paediatric and
amputee physiotherapists may help to address these issues
and better equip the children for optimal future function into
adult life.

Acknowledgements
The authors wish to thank Jeanne Hartley for her advice,
support and encouragement throughout this project, and those
who completed the survey and participated in discussions

J. Treby, E. Main / Physiotherapy 93 (2007) 212217

around the rehabilitation of children following lower limb

amputation.
Funding: This work was undertaken by Great Ormond Street
Hospital for Children NHS Trust which received a proportion
of its funding from the NHS Executive; the views expressed
in this publication are those of the authors and are not necessarily those of the NHS Executive.
Ethical approval: None required.
Conict of interest: None.

Appendix A. Supplementary data

Supplementary data associated with this article can
be found, in the online version, at doi:10.1016/j.physio.
2006.08.007.

References
[1] McCarthy JJ, Glancy GL, Chang FM, Eilert RE. Fibular hemimelia:
comparison of outcome measurements after amputation and lengthening. J Bone Joint Surg Am 2000;82:17325.

217

[2] Rose R, Fuentes A, Hamel BJ, Dzialo CJ. Pediatric leg length discrepancy: causes and treatments. Orthop Nurs 1999;18:2130.
[3] Davies MS, Nadel S, Habibi P, Levin M, Hunt DM. The orthopaedic
management of peripheral ischaemia in meningococcal septicaemia in
children. J Bone Joint Surg Br 2000;82:3836.
[4] Gudas S. Rehabilitation of pediatric and adult sarcomas. Rehabil Oncol
2000;18:103.
[5] Trautwein LC, Smith DG, Rivara FP. Pediatric amputation injuries:
etiology, cost and outcome. J Trauma 1996;41:8318.
[6] Amputee statistical database for the United Kingdom 2001/02 report.
Edinburgh: Information & Statistics Division NHSScotland; 2003.
[7] Krebs D-E, Fishman S. Characteristics of the child amputee population.
J Pediatr Orthop 1984;4:8995.
[8] Katz J. Phantom limb experience in children and adults: cognitive and
affective contributions. Canad J Behav Sci 1993;25:33547.
[9] Nikolajsen L, Jensen TS. Phantom limb pain. Br J Anaesth
2001;87:10716.
[10] Brouwer BJ, Allard P, Labelle H. Running patterns of juveniles wearing
SACH foot and single-axis foot components. Arch Phys Med Rehabil
1989;70:12834.
[11] Broomhead P, Dawes D, Hale C, Lambert A, Quinlivan D, Shepherd
R. Evidence based clinical guidelines for the management of adults
with lower limb prostheses. British Association of Chartered Physiotherapists in Amputation Rehabilitation. London: Chartered Society of
Physiotherapy Publications; 2003.
[12] National Service Framework for children, young people and maternity
services: executive summary. London: Department of Health Publications; 2004.