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Received: 7 December 2018    Revised: 13 February 2019    Accepted: 13 February 2019

DOI: 10.1111/hae.13727

ORIGINAL ARTICLE

Scope of practice of haemophilia physiotherapists: A European


survey

David Stephensen1,2  | Piet de Kleijn3,4 | Ruth Elise D. Matlary5 | Marie Katzerova6 |


Paul McLaughlin7  | Aislin Ryan8 | Sebastien Lobet9,10,11  | on behalf of the EAHAD
Physiotherapists Committee

1
East Kent Hospitals University NHS Trust,
Canterbury, UK Introduction: European guidelines on the care of haemophilia recommend ready ac-
2
Royal London Hospital, Haemophilia cess to a range of services provided by a multidisciplinary team of specialists includ-
Centre, London, UK
ing physiotherapy. However, the scope of physiotherapy provided is unknown.
3
University Medical Center Utrecht, Van
Creveldkliniek, Utrecht, The Netherlands
Methods: The Physiotherapists Committee of the European Association for
4
Department of Rehabilitation, Physical Haemophilia and Allied Disorders (EAHAD) conducted a web‐based survey to quan-
Therapy Science and Sport, University tify the role and scope of practice of physiotherapists involved in haemophilia care.
Medical Center Utrecht, Utrecht, The
Netherlands The survey was sent to more than 200 physiotherapists registered on the EAHAD
5
Department of Clinical Service, Oslo database. Questions concerned their work practices including assessment and treat-
University Hospital, Rikshospitalet, Oslo,
ment activities and level of autonomy.
Norway
6
Department of Rehabilitation, University Results: Eighty physiotherapists from twenty‐four European countries responded.
Children's Hospital, Brno, Czech Republic Considerable heterogeneity exists in roles, responsibilities, and clinical practice of
7
Royal Free Hospital NHS Trust, Katharine
physiotherapists, particularly in access to and type of physiotherapy treatment pro-
Dormandy Haemophilia Centre and
Thrombosis Unit, London, UK vided, as well as the skill set and autonomy of physiotherapists to make independent
8
European Association for Haemophilia and assessment and treatment decisions.
Allied Disorders, Brussels, Belgium
9
Discussion: This pan‐European survey establishes a context to support physiother-
Secteur des Sciences de la Santé,
Institut de Recherche Expérimentale apy role development and professional identity. Key recommendations include the
et Clinique, Neuromusculoskeletal Lab following: (a) establishing a pan‐European network to support collaboration and edu-
(NMSK), Université catholique de Louvain,
Brussels, Belgium cation for physiotherapists working in haemophilia, (b) developing a core skills and
10
Service d'hématologie, Cliniques capability framework to ensure person‐centred approaches are central as well as
Universitaires Saint‐Luc, Brussels, Belgium
working in partnership with those with the condition to maximize early recovery,
11
Service de Médecine Physique et
Réadaptation, Cliniques Universitaires Saint‐ support self‐management and enablement in remaining active and independent, (c)
Luc, Brussels, Belgium regular training, standardized validation and maintenance of competency for assess-

Correspondence ment tools, (d) well‐designed randomized clinical studies with larger numbers of par-
David Stephensen, East Kent Hospitals ticipants from multiple sites should be the focus of future research.
University NHS Trust, Canterbury, UK.
Email: david.stephensen@nhs.net

1 |  I NTRO D U C TI O N muscular structures.1-3 Due to the complexity of managing haemo-


philia, European guidelines on the care of the condition recommend
Haemophilia is an inherited disorder, characterized by repeated that those with the disorder should have ready access to a range of
bleeding into joints and muscles. The consequences of the disorder services provided by a multidisciplinary team of specialists including
are musculoskeletal (MSK); typified by a degenerative process of ir- availability of a physiotherapy service.4 However, a 2015 survey of
reversible changes to articular cartilage and other joint as well as 37 European countries by the European Haemophilia Consortium

Haemophilia. 2019;1–7. © 2019 John Wiley & Sons Ltd |  1


wileyonlinelibrary.com/journal/hae  
|
2       STEPHENSEN et al.

found 30% of counties reported access to physiotherapy for people professional conduct within the framework of health legislation in
5
with haemophilia was only sometimes available. It is recommended respective countries.
that physiotherapy involvement begins at the time of diagnosis and Services provided by physiotherapists include examination and
covers functional recovery after each musculoskeletal bleed, reha- assessment, evaluation, interventions and treatments, outcome
bilitation aspects on the aforementioned chronic aspects and on- assessments, health promotion and prevention. A comprehensive
going MSK surveillance and prevention, continuing throughout an evaluation of the role and work practices of the haemophilia phys-
individual's lifespan. Despite this recommendation there is a lack of iotherapists across Europe has not been previously undertaken. In
evidence based guidelines on the optimal role and work practices of 2015, a Physiotherapists' Committee of the European Association
physiotherapists. for Haemophilia and Allied Disorders (EAHAD) was established with
The World Health Organization defines rehabilitation as “a set the aim of connecting physiotherapists working in this specialized
of measures that assist individuals, who experience or are likely area and to facilitate the exchange of knowledge between them with
to experience disability, to achieve and maintain optimum func- the end goal of improving the provision and quality of musculoskele-
tioning in interaction with their environments.”6 Rehabilitation tal care to patients with bleeding disorders throughout Europe.
goals include achieving prevention and slowing the rate of func- The aim of the current survey is to document and quantify the
tional loss, improving or restoring function, compensation for lost role and scope of practice of physiotherapists in European HTCs.
function and maintaining current function. The ability to move is This information will be of value to establish European principles
an essential element of health and well‐being and central to what of physiotherapy practice for people with haemophilia to support
7
it means to be healthy. Physiotherapy is directed towards the professional education strategies and enhance self‐governance of
movement needs and potential of individuals providing rehabili- physiotherapists.
tation and services to develop, maintain and restore maximum
movement and functional ability and prevent MSK impairment
throughout the lifespan. 2 | M E TH O DS
Although joint disease is the predominant feature of haemophilia,
it differs from other forms of arthritis in pathogenicity. Haemophilic The Physiotherapists Committee of EAHAD developed a web‐based
arthropathy has an onset early in life, is progressive, irreversible, and survey in English, including questions concerning respondents’ char-
involves multiple peripheral joints, weight bearing as well as non‐ acteristics, physiotherapy work practices including assessment and
weight bearing, leading to marked functional impairments.8,9 The treatment activities and level of autonomy. The survey was sent to
role of physiotherapy in haemophilia is described as: general health more than 208 physiotherapists across 31 European countries regis-
prevention, rehabilitation following acute musculoskeletal bleeding, tered on the EAHAD database in March 2018. To reach physiothera-
maintenance of mobility and function to maximize physical activities pists not on the database, respondents were asked to forward the
and participation in chronic situations as well as preoperative and survey to other health professionals in their HTCs to forward to their
postoperative rehabilitation.10,11 How these roles are implemented colleagues to in turn forward to their physiotherapists. Two follow‐
is likely to vary depending on the specific health care resources and up invitations to complete the survey were sent to those registered
autonomy of physiotherapists in each country, as well as the haemo- on the EAHAD database.
philia treatment centre (HTC). Percentages were calculated per separate answer and are pro-
In line with professional standards from the Chartered Society portional to the number of responses per question. This was re-
of Physiotherapy, the Haemophilia Chartered Physiotherapists ported as descriptive statistics using Microsoft Excel. All responses
Association in the United Kingdom has developed guidelines of were incorporated in the analysis, including countries where a sin-
physiotherapy practice for people with haemophilia.12 Professional gle response was returned. For countries with two or more survey
autonomy for physiotherapists was established in the United respondents, results were differentiated to identify variation in
Kingdom in 1977 and enables health professionals to make indepen- practice.
dent decisions regarding the management of a patient based on his/
her own professional knowledge and expertize and to manage his/
3 | R E S U LT S
her practice independently according to the code of professional
conduct within the framework of health legislation. Policy state-
3.1 | Characteristics of respondents
ments from the World Confederation for Physical Therapy (WCPT)
state that physiotherapists should have the freedom to exercise Eighty physiotherapists from 24 European countries responded to
their professional judgement and decision making, wherever they the survey, with no response from seven countries (Table 1). Seventy
practice, within the physiotherapist's knowledge, competence and per cent of respondents were associated with a Haemophilia
13
scope of practice. Physiotherapists should be able to act as first Treatment Centre (HTC) and 50% worked at centres with at least
contact practitioners without referral from another health profes- 50 patients registered with severe haemophilia. Association with
sional. Despite these statements, the degree of autonomy of phys- a HTC was not comparable between countries, ranging from 0%
iotherapists varies internationally,13 due to the diverse codes of (Luxemburg) to 100% (Denmark, Ireland, Netherlands, Sweden,
STEPHENSEN et al. |
      3

TA B L E 1   Summary of countries surveyed and respondents

Number of certified
Number of people haemophilia treatment Number of haemophilia Number of physiother- Percentage of all
Country with haemophilia centres treatment centres apist respondents respondents (%)

Albania 306 0 1 1 1.23


Austria 798 2 13 — —
Azerbaijan 1304 0 0 — —
Belgium 1239 5 11 5 6.17
Croatia NR 1 2 1 1.23
Czech 1077 6 7 3 3.70
Republic
Denmark 523 0 3 2 2.47
Estonia 111 1 2 — —
Finland 247 4 5 1 1.23
France 7524 6 37 6 7.41
Georgia 323 1 5 1 1.23
Germany 4553 14 40 1 1.23
Ireland 844 4 4 3 3.70
Israel 700 0 1 1 1.23
Italy 5005 11 55 11 13.58
Lithuania 174 2 3 3 3.70
Luxembourg NR 0 0 2 2.47
Macedonia NR 1 1 — —
Netherlands NR 6 10 4 4.94
Norway 419 1 1 1 1.23
Poland 2869 1 11 — —
Romania 1825 3 11 1 1.23
Russia 7451 0 6 — —
Serbia 523 2 8 — —
Slovakia 599 2 4 1 1.23
Spain NR 3 38 1 1.23
Sweden 839 3 3 2 2.47
Switzerland 418 7 12 5 6.17
Turkey NR 5 18 7 8.64
Ukraine 2188 1 1 1 1.23
UK 8205 22 80 15 18.52

NR, Data Not Reported in Annual Global Survey.


Source of People with haemophilia statistics: World Federation of Haemophilia report on the Annual Global Survey 201731
Source of Haemophilia Treatment Centres: EUHANET www.euhanet.org32

Switzerland, and United Kingdom). Physiotherapists from Lithuania, per week). Seventy‐eight per cent of all respondents treated persons
Luxemburg and Turkey were less likely to be working at a HTC than with conditions other than haemophilia as part of their routine work.
their colleagues from other European countries. Orthopaedic/musculoskeletal and rheumatological conditions were
Forty‐seven per cent of physiotherapists spent <5 hours per week the most common. Others included, neurological, other paediatric
related to haemophilia care, with 25% allocating 5‐14 hours, 19% conditions, haematological, oncology, surgery and cardiorespiratory.
15‐24 hours and 10% more than 25 hours per week. Physiotherapists Eighty‐nine per cent of physiotherapists had a minimum university,
from Belgium, Czech Republic, France, Luxembourg and Turkey were college or academy education. We did not ascertain if this was to de-
more likely to treat PWH for less than five hours per week. United gree level of equivalent. Eleven per cent did not report their training.
Kingdom was the only country to report physiotherapists who treated Seventy‐four per cent reported receiving no education or training re-
PWH more than 24 hours per week (approximately more than 3 days lated to haemophilia during their primary physiotherapy qualification.
|
4       STEPHENSEN et al.

TA B L E 2   Key recommendations to support physiotherapy role


3.2 | Access to physiotherapy development and professional identity
Seventy per cent of physiotherapists reported that PWH could not 1. To establish a pan‐European network to support collaboration
receive physiotherapy treatment without a referral from a doctor. In and education for physiotherapists working in haemophilia
most cases, referral from a haematologist (75%), orthopaedic (51%) 2. To develop a core skills framework to ensure to that person‐cen-
or rehabilitation specialist (36%) was required. Fifty‐eight per cent tred approaches are central to haemophilia care and working in
partnership with those with the condition to maximise early
reported that people with haemophilia received unlimited treat-
recovery, support self‐management and enable people to stay
ment free at the point of delivery. Twenty‐five per cent reported active and independent.
that whilst people with haemophilia could access physiotherapy
3. Regular training, standardized validation and maintenance of
at no cost, the number of treatments was limited. Fifteen per cent competency for those using HJHS, and other tools are essential.
reported that people with haemophilia were required to pay some 4. Further well‐designed randomized clinical studies with larger
of the cost towards physiotherapy. Czech Republic, France, Ireland, numbers of participants from multiple sites should be the focus of
Spain and the United Kingdom reported unlimited cost‐free ac- future research

cess to physiotherapy for PWH, whilst Denmark and Luxembourg


reported cost‐free access for a restricted number of treatments.
Within‐country differences were seen for Italy, Switzerland and
3.4 | Assessment techniques and tools utilized by
Turkey. Belgium and Sweden were the only countries to report no
physiotherapists for haemophilia care
cost‐free access to physiotherapy for PWH, both reporting patients
paid part of the cost. Clinical examination of the musculoskeletal system including joint,
muscle, posture, gait and function were utilized by most physiother-
apists (Figure 1).
3.3 | Autonomy of physiotherapist
Of the standardized tools, as recommended by the World
Ninety‐three per cent of physiotherapists make their own assess- Federation of Haemophilia, the Haemophilia Joint Health Score
ment of a musculoskeletal problem and decide on the appropri- (HJHS)14 was used most commonly (85%), the adult or paediatric
ate physiotherapy treatment or rehabilitation. However, a third version of the Haemophilia Activities List (HAL)15,16 regularly (55%),
reported that their assessment or physiotherapeutic treatment and the Functional Independence Score for Haemophilia (FISH)17
decision required verification or confirmation from a medical doc- less (15%). Twenty‐six per cent reported independently using point‐
tor. Denmark and the United Kingdom were the only countries of‐care ultrasound and 25% reported being able to independently
where all physiotherapists reported full autonomy for treatment request radiological imaging. The highest rates of point‐of‐care ul-
decisions. Some, but not all physiotherapists from Ireland, Spain trasound use were reported by United Kingdom (67%) and French
and Sweden reported a lack of autonomy for treatment decisions. physiotherapists (50%). Independence of radiological requesting
Belgium and Switzerland (60%), Italy (78%) and Luxembourg (100%) was only reported in the United Kingdom (47%) and Italy (50%).
reported the highest rates for verification of treatment by a medi- Other reported assessment tools included quantitative as-
cal doctor. sessments of posture and balance using pressure mats and

Clinical examination of joints and muscles

Haemophilia Joint Health Score (HJHS)

Clinical examination of posture, gait or function

Haemophilia Activities List (HAL)

Point-of-care ultrasound

Request imaging

Peadiatric Haemophilia Activities List (PedHAL)

FISH

Other haemophilia examinations/scores

0% 20% 40% 60% 80% 100%

F I G U R E 1   Assessments utilized by physiotherapists for haemophilia care


STEPHENSEN et al. |
      5

three‐dimension movement analysis, mobility with the timed up and their haemophilia knowledge through networking with their immedi-
go test and two‐minute walk test and physical activity with acceler- ate haemophilia centre colleagues.
ometers. A range of patient self‐reported outcome questionnaires
are also used by some physiotherapists, including; Oxford Elbow
3.7 | National variations
score, Oxford Knee Score, Foot and Ankle Ability Measure, EQ‐5D,
Musculoskeletal Health Questionnaire and CONFBAL scale (confi- In the United Kingdom, people with haemophilia had unlimited access,
dence in balance/falls questionnaire). free at the point‐of‐contact to specialist physiotherapists who had au-
tonomy to make independent assessment and treatment decisions.
In the Czech Republic, France, Ireland and Spain, patients had unlim-
3.5 | Treatment interventions utilized by
ited access free at the point‐of‐contact to specialist physiotherapists
physiotherapists for haemophilia care
but the physiotherapists lacked full autonomy to make independent
The most common treatments provided by physiotherapists as part assessment and treatment decisions. In Belgium, Luxembourg and
of their haemophilia practice were muscle strengthening (Figure 2), Switzerland, it was reported that people with haemophilia have re-
education, joint range of motion techniques, soft‐tissue techniques, stricted access to specialist physiotherapists that also lacked full au-
taping and manual therapy (Figure 2). Less common modalities tonomy to make independent assessment and treatment decisions.
were massage, electrotherapy, splinting, activity camps and ultra-
sound therapy. Laser and magnetic therapy, acupuncture and cryo-
therapy were used least; less than 10% of physiotherapists. Three 4 | DISCUSSION AND RECOMMENDATIONS
United Kingdom physiotherapists reported autonomy to prescribe
medication and perform intra‐articular joint injections. We did not Although the response rate to this survey was 38%, a limitation is
collect information on the training and further qualifications ob- that half of respondents were from four countries; UK, Italy, Turkey
tained for providing treatment interventions under supervision or and France, and there was one respondent each from ten of the
autonomously. countries. It is not known if the one respondent from those coun-
tries was representative of other physiotherapists. Nevertheless,
the spread of participants and their wide‐ranging responses provide
3.6 | Learning and professional development of
a comprehensive insight into the scope of practice of haemophilia
physiotherapists
physiotherapists in Europe.
Physiotherapists employ a range of strategies to maintain their learn- This survey emphasizes the considerable heterogeneity in roles,
ing, competence and professional development with regard to hae- responsibilities and clinical practice of physiotherapists in the care
mophilia. Attendance at congresses and conferences, as reported of people with haemophilia across Europe. There is marked variabil-
by 74%, is most common. Workshop/course attendance, accessing ity in access to physiotherapy treatment along with the autonomy
journal articles and literature and professional peer networks were of physiotherapists to make independent assessment and treat-
utilized by 45% of our respondents. Twenty‐one per cent maintained ment decisions due to the diverse codes of professional conduct

Muscle strengthening
Education
Active joint motion/ROM
Rehabilitation techniques
Physical therapy/kinesiotherapy
Soft tissue techniques
Taping
Manual therapy
Hydrotherapy/spa treatment
Massage
Electrotherapy
Summer/sports/activity camps
Splinting
Ultrasound therapy
Laser therapy
Acupuncture
Magnetic therapy
Cryotherapy
F I G U R E 2   Treatments utilized by
physiotherapists for haemophilia care 0% 20% 40% 60% 80% 100%
|
6       STEPHENSEN et al.

within the framework of health legislation in respective countries. central to haemophilia care and working in partnership with those with
13
Despite policy statements from the WCPT that physiotherapists the condition to maximize early recovery, support self‐management and
should have the freedom to exercise their professional judgement enable people to stay active and independent (Table 2).
and decision making, wherever they practice and act as first con- Function and the International Classification of Functioning,
tact practitioners without referral from another health profes- Disability and Health (ICF)19 domains of activity and participation are
sional, this is not the current practice in health care systems of all assessed to a lesser extent, as previously reported by de Kleijn et al in
European countries, where persons with haemophilia are involved. 2002.20 The patient‐reported questionnaires, HAL15 and its paediatric
Almost half of physiotherapists that responded to the survey spent version PedHAL16 are utilized by more than half of physiotherapists
less than one half‐day per week managing a haemophilia caseload. but actual performance of functional physical tasks and activities is
Haemophilia experience was not evaluated in this survey, but it under‐utilized. Performance and participation in activities as well as
would be challenging to attain a wide breadth of knowledge, clinical clinical examinations of joint structure has the potential to improve
skills and experience of haemophilia care within this time allocation. monitoring of musculoskeletal health and subsequent functional mod-
To address this, the EAHAD Physiotherapists group has established ifications. A wide range of additional patient‐reported questionnaires
a network of regional coordinators, in order to give any physiother- as well as objective timed performance tests were reported. Many
apist, in any setting the possibility for professional feedback. tests and tools have not undergone validity and reliability testing in
Physiotherapists in the United Kingdom are more likely to people with haemophilia, which weakens their use as reassessment
be aligned to a Haemophilia Treatment Centre and spend more tools. Furthermore, normative values are often unknown. A third rec-
hours treating people with the condition than their European col- ommendation of this survey is that regular training, standardized vali‐
leagues. Physiotherapy for haemophilia in the United Kingdom is dation and maintenance of competency for those using HJHS, and other
well organized with scope of practice and standards defined by the tools are essential (Table 2). Standardizing a core set of outcomes is
Haemophilia Chartered Physiotherapists Association. Established necessary whilst minimizing patient burden of multiple assessments.
more than 25 years ago, this national network supports collabora- Respondents reported a wide range of therapeutic treatments
tion and education for physiotherapists working in haemophilia18 utilized by physiotherapists and represent those described in a re-
and could well serve as an example for other countries. cent review of advances in musculoskeletal physiotherapy.21 Muscle
Surprisingly across all respondents, only two‐thirds of physiother- strengthening, education and active joint motion were the most com-
apists reported autonomy of assessment and treatment. It is, however, mon modalities reported. It is reassuring to note the predominance of
possible that rates of autonomy were underestimated and physiother- active intervention with patient participation, rather than the passive
apists are autonomous in some circumstances but not others. For ex- modalities of treatment. There is reasonable evidence emerging that
ample, inpatient treatment may require strict referral but outpatient exercise via its effect on pain, joint range of motion (ROM), strength
treatment may not and vice versa. Survey responses suggest physio- and mobility can have a positive impact on maximizing mobility and
therapy assessment of people with haemophilia is focused on muscu- function, behaviour and quality of life in PWH.22-25 Similarly, man-
loskeletal structure and the clinical examination of joints and muscles, ual therapy—controlled use of manual force applied to articular and
with the validated HJHS14 commonly utilized. In some European coun- soft‐tissue structures through mobilization and stretching to improve
tries, physiotherapists have enhanced their scope of practice to include biomechanical elasticity—shows some potential benefit, particularly
requesting imaging and performing point‐of‐care ultrasound imaging. on pain.26-30 Unfortunately, studies demonstrating promising results
We note that physiotherapists from Italy reported the ability to request often used\were based on heterogeneous cohorts, few and low pow-
radiological imaging, but little autonomy with regard to physiothera- ered. Due to small numbers of studies and diversity of outcomes,
peutic treatment. This could be misunderstanding of survey questions meta‐analysis and confirmation of efficacy has yet to be reported.
or a foundation for greater professional autonomy. This extended scope Whilst adequately powered studies are challenging due to the rarity of
of practice, reflective of increased autonomy, should be encouraged. the condition, the fourth recommendation of this survey is further well‐
The first recommendation of this survey is to establish a pan‐ designed randomized clinical studies with larger numbers of participants
European network to support collaboration and education for physio‐ from multiple sites should be the focus of future research (Table 2).21,23
therapists working in haemophilia (Table 2). Currently, education about This European survey establishes a context to support physiother-
haemophilia is not included in undergraduate training; however, the apy role development and professional identity. The recently estab-
variety of assessment and treatment approaches reported in this lished Physiotherapists' Committee of the European Association for
survey suggest that the condition could be used as a model for teach- Haemophilia and Allied Disorders (EAHAD) would be the ideal network
ing multi‐ and inter‐disciplinary management for health conditions to implement the recommendations. It should also be used to facilitate
for physiotherapists and other healthcare professions. Supporting the development of guidelines on scope of practice, establish core skills,
opportunities for physiotherapists’ attendance at national and inter- competency and educational frameworks for physiotherapists involved
national meetings and workshops enabling formal education as well in haemophilia care as well as strategies to improve the musculoskeletal
as networking is essential to facilitate continued learning and skills management of people with haemophilia. We recommend that a core
development. The second recommendation is the need to develop skills and capability framework include the standards expected of phys-
a core skills framework to ensure that person‐centred approaches are iotherapists in delivering a musculoskeletal service, and the knowledge,
STEPHENSEN et al. |
      7

skills and behaviours that practitioners need to develop and demonstrate. 15. Genderen FR, Westers P, Heijnen L, et al. Measuring patients' per-
It is important that any framework for a rare disease like haemophilia is ceptions on their functional abilities: validation of the Haemophilia
Activities List. Haemophilia. 2006;12(1):36‐46.
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16. Groen WG, van der Net J, Helders PJ, Fischer K. Development
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cess, time, autonomy, funding and training are addressed. Activities List (pedhal). Haemophilia. 2010;16(2):281‐289.
17. Poonnoose PM, Manigandan C, Thomas R, et al. Functional
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