British Journal of Rheumatology 1996;35:695-699

PAEDIATRIC RHEUMATOLOGY: CLINICAL PRACTICE REVIEW

PHYSIOTHERAPY AND OCCUPATIONAL THERAPY FOR JUVENILE CHRONIC ARTHRITIS: CUSTOM AND PRACTICE IN FIVE CENTRES IN THE UK, USA AND CANADA
J. HACKETT,* B. JOHNSON,* A. PARKIN* and T. SOUTHWOOD*t
"Paediatric Rheumatology Department, Birmingham Children's Hospital-NHS Trust, The General Hospital, Steelhouse Lane, Birmingham B4 6NH and ^Department of Rheumatology, University of Birmingham, Edgbaston, Birmingham B152TT SUMMARY Physiotherapy and occupational therapy are widely accepted as being of central importance for the treatment of juvenile chronic arthritis (JCA). However, these approaches have rarely been subject to critical scrutiny. The aims of this report are to highlight some of the inter-centre similarities and differences observed in the implementation of physical and occupational therapy for JCA, and to emphasize the need for scientifically controlled research in this area. During a series of visits to several paediatric rheumatology units in the UK, USA and Canada, three aspects of the service were noted: treatment philosophy, physical interventions used for the treatment of JCA and quality-of-life and independence training activities. There was general consensus with the philosophy that early physical intervention was a vital part of the treatment plan for JCA, although all therapists were concerned that compliance with treatment modalities was poor. Differences between units in the approach to acute arthritis, the use of foot orthoses and wrist splints, the treatment of joint contractures and the use of general quality-of-life training activities were noted. Although it was widely recognized that controlled research into the efficacy of physical intervention was needed, no centre had a co-ordinated plan for such investigations.
KEY WORDS:

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Juvenile chronic arthritis, Physiotherapy, Occupational therapy.

THE accepted current treatment of juvenile chronic arthritis (JCA) involves a team approach and includes a number of different physical, pharmacological and social interventions [1]. Physical and occupational therapies have been assumed to play vital roles in this process [2]. While there is consensus that the input from an experienced team of therapists is valuable for the emotional wellbeing of both the child and the family, there has been very little published research to assess the physical efficacy of this approach [3-5]. Most evidence in support of these interventions has been based on anecdote and clinical experience rather than on data from prospective controlled clinical trials [6]. The aim of this article is to review some of the physical interventions used for the treatment of JCA and to compare the approaches employed in five centres specializing in paediatric rheumatology in the UK, USA and Canada. METHODS Three therapists from the Childhood Arthritis and Rheumatic Diseases Unit, Birmingham Children's Hospital-NHS Trust, visited four paediatric rheumatology centres, chosen for their national and international reputation in the physical treatment of JCA, during February and September 1993. Specific
Submitted 18 March 19%; revised version accepted 19 March 1996. Correspondence to: T. Southwood, Paediatric Rheumatology Department, Birmingham Children's Hospital-NHS Trust, The General Hospital, Steelhouse Lane, Birmingham B4 6NH.

information was sought in three areas: (1) overall treatment philosophy of each unit; (2) the physical and occupational therapy techniques for the management of acute arthritis, the use of foot orthoses and wrist splints and the approach to joint contractures; (3) quality-of-life and independence training activities. One physiotherapist visited two units in the UK: Wexham Park Hospital, Slough, and Northwick Park Hospital, Harrow. These units were based in district general hospitals and had designated rheumatology and rehabilitation facilities. Northwick Park Hospital had a paediatric rheumatology in-patient ward. Another physiotherapist and an occupational therapist visited the Children's Program, Canadian Arthritis and Rheumatism Society, Vancouver, Canada, and the San Francisco Pediatric Rheumatology Program based at the University of San Francisco, Shriners Hospital and Mount Zion Hospital in San Francisco. The Children's Program shared in-patient and out-patient facilities with other paediatric specialities and adult rheumatology services, respectively. The San Francisco Program shared in-patient and out-patient facilities with other paediatric specialities. The information gained from visits to these units was compared with approaches employed at the Childhood Arthritis and Rheumatic Diseases Unit in Birmingham, UK. RESULTS Treatment philosophy The overall treatment goals of each unit were remarkably similar: to maximize the child's quality of life, while minimizing the effects of arthritis on the
1996 British Society for Rheumatology 695

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BRITISH JOURNAL OF RHEUMATOLOGY VOL. 35 NO. 7 range passive movements at the end of the non-painful range to be effective in aiding relaxation and increasing joint range. (ii) Approach 2: This approach aimed to improve joint range of movement beyond the end of the pain-free range and weights were used from the onset of disease, even in the presence of acute arthritis. The advantages and disadvantages of either of these approaches and the long-term outcome had not been systematically investigated by any of the units. Foot orthoses. Four units used custom-moulded foot orthoses for the correction and maintenance of foot and ankle alignment in the presence of arthritis, and such orthoses were used early in the disease course to prevent irreversible deformity and relieve pain [8]. (i) Site of manufacture: In only one unit were the casting, manufacture and fitting of foot orthoses undertaken on site by a member of the paediatric rheumatology teamthe occupational therapist. All of the other units employed orthoses who had workshops distant from the sites of the units. The latter approach was universally felt to result in prolonged delays between the ordering of the orthoses and the actual fitting of the patient. (ii) Materials: The materials used varied; EVA and polypropylene were most commonly used, while polyethylene was the material of choice in only one. The EVA orthoses appeared to be better tolerated than the firmer polypropylene, and polyethylene had the advantage in that small adjustments could be made easily. It was felt that a well-made orthosis was comfortable regardless of the material. (iii) Casting techniques: The personal preference of the therapists within each unit determined whether the foot should be cast when the child was non-weight bearing or when partial weight bearing in the sitting position. In one of the units, the most corrective foot position appeared to result from casting the child in a prone lying position with the knee extended. This approach allowed easier measurement of the midtarsal, subtalar and ankle joints, and casting of the joints in the neutral position. Correct initial casting of the foot was felt to be vital. However, additional posting after casting was occasionally required to stabilize the orthosis in the shoe. Hand and wrist splinting. Each unit used hand and wrist splints as soon as there was any indication that

child's joints. The units agreed that early intervention was vital to prevent joint contractures and felt that past clinical experience strongly supported the efficacy of this approach. However, patient and family compliance with therapeutic programmes was a constant concern. Although physical therapy strategies and regular monitoring were designed to maximize compliance in all units, considerable variation in approaches was noted. Physical therapy strategies. Strategies for the timing of physiotherapy exercises varied between units, ranging from intermittent 'bursts' of treatment to continuous routines. (i) Intermittent physiotherapy: The 'intermittent' strategy employed intensive bursts of either in-patient or out-patient therapy lasting for several weeks at the most, usually with specific pre-determined measurable and achievable goals. Following the attainment of the goals, some children and families were given a 'therapeutic holiday' where only maintenance physiotherapy or splint wearing was required. In one unit, children were treated mainly as in-patients for short periods of intensive therapy. The importance of an assigned 'key' worker for each patient and family was noted, to ensure continuity of care. When this ideal was not fulfilled, maintaining continuity of care between the hospital and the child's local community became problematic. (ii) Continuous physiotherapy: The more conventional 'continuous' approach emphasized regular constant daily physiotherapy exercises and splint wearing, but there was an impression that full compliance was less likely with this approach. All units advocated hydrotherapy, and this was usually implemented either locally within the child's own community or centrally within the paediatric rheumatology unit, according to the convenience of the patient and family. Monitoring. All units monitored the effects of arthritis on the patient's range of joint movement using specifically developed range of movement charts [7]. In some units, the monitoring mainly occurred when the patient was admitted to hospital. Outside the hospital setting, monitoring was continued by the local community therapist for each patient. In contrast, the other units placed emphasis on regular monitoring on both an in-patient and out-patient basis, by the units' own specialized therapists. Physical and occupational therapy techniques Approach to acute arthritis. Variations in each centre's approach to the treatment of acute arthritis were noted. Some units favoured a more aggressive approach for increasing the range of motion in painful swollen joints, while others used a gentler approach, (i) Approach 1: This approach employed passive and active range of movements to the end of the pain-free range only, and was felt to be kinder to the patients. Weights to increase or maintain muscle bulk were not used until the acute arthritis had resolved. One unit found the use of limb suspension and small

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TABLE I Principles of working hand splints generally accepted at five paediatric rheumatology centres 1. 2. 3. 4. Wrists should be held in approximately 15 of extension and up to 5 of ulnar deviation to ensure maximum function The splint should allow adequate finger movement and especially thumb opposition, for writing and other hand functions The splint should conform precisely to the anatomy of the wrist and palm to avoid pressure points. Extra space should be allowed over the ulnar styloid for pronation and supination The splint should extend at least to the mid point of the forearm to prevent excessive wrist movement

HACKETT ET AL:. PHYSIOTHERAPY AND OCCUPATIONAL THERAPY IN JCA these joints were involved in the arthritic process (including early morning stiffness), even in the absence of visible joint deformity or contracture. (i) Types of splints: Resting splints were used to minimize pain, improve sleep, and ensure optimal wrist, hand and finger position at night. The wrist was splinted in up to 15 of extension, the fingers were positioned in slight flexion at the metacarpophalangeal and interphalangeal joints and the thumb was placed in a position of mid opposition and abduction. In all units, working splints were indicated for daytime use when the wrists had obvious active arthritis, pain or fatigue. This aimed to reduce pain and support weakened wrist joints, improve hand function and correct/prevent deformities (Table I). (ii) Responsibility for splint manufacture: Occupational therapists were usually responsible for overseeing the manufacture and fitting of the splints, but a variety of other therapists, including orthotists, splint technicians and physiotherapists, were also involved, depending on the unit. A variety of materials were used for the splints, including x-lite, Turbocast, Orfit, polyethylene, polypropylene, leather, Sansplint and plaster of Paris. Each had their own advantages and disadvantages (Table II). Most units felt that poor compliance with wearing of hand splints was more often due to their cosmetic appearance than to poor fit. Treatment of joint contractures. All units required radiological assessment of the joint space before considering a programme to reduce joint contracture. The absence of appreciable joint space, or joint ankylosis, were contraindications to any such programme. Four main approaches were employed: night resting splints, serial casting, dynamic splinting and drop out casts, all of which appeared anecdotally to be of benefit. (i) Night resting splints: The most universally employed modality was night resting splints, particularly for the child with knee arthritis. All units experienced poor compliance with the night splinting programme, especially if both legs were splinted. In one unit, relatively brief splint wearing times of a few hours every evening or night were tried, and this approach did not appear to have any obvious deleterious effects. Another approach was to splint alternate limbs on alternate nights. (ii) Serial casting: Serial casting for fixed flexion contractures of the knee or wrist was also commonly used by all units, usually while the patient was in hospital. The technique involved incrementally straightening the joint with a series of plaster of Paris casts. The joint was gently stretched to the limit of extension and held in that position for 1-2 days by the cast. After removal of the cast, the joint was mobilized vigorously and extended further for the next cast to be applied; the cycle being repeated several times over a 2-3 week period. All units were aware of the risk of joint subluxation using this procedure. (iii) Dynamic splints: Dynamic splinting had been employed in some centres, but had not been evaluated in comparison with serial splints. The dynamic splint

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was a spring-loaded, hinged device which, when correctly fitted, supplied a constant, gentle extension force to the joint. All units agreed that this technique should only be used on a contracted joint that did not have acute arthritis. Unfortunately, dynamic splints were found to be difficult to fit correctly by most parents. In one unit, dynamic splinting of the elbow and knee had been used with some success. (iv) Drop out splints: Drop out splints, especially for the knee, were made by casting the knee in maximum extension. The cast was then bivalved, and the posterior segment was used to prevent leg flexion. Gravity was used to assist extension of the knee [9]. These splints were used by another unit for knee flexion contractures of < 10, or after serial casting when the rate of progress had slowed down. The main advantage of knee drop out splints was felt to be that quads exercises could be performed without removing the splint. Quality-of-life and independence training activities All units were well aware of the effects of arthritis on the child's psychological and physical health, as well as the disruption caused to the parents and siblings of the child. Having arthritis was thought to affect all aspects of the child's life, including home life, schooling and hobbies. The units agreed that independence could be delayed if the child was overprotected or if their opportunities to participate in appropriate activities were restricted. Each unit attempted to facilitate the child's normal development and prevent social and peer group problems, using a variety of approaches, including summer camps, school holiday therapy days and adolescent independence training weekends. Summer camps. Four units had access to annual summer 'holiday' camps for children with arthritis. These included adventure-type activities (nature trails, swimming, canoeing, archery), as well as disease education and leisure sessions. Three of the four camps were open to the whole family, not just the arthritic child. They appeared to be useful for increasing knowledge about arthritis and its treatment [10] (M. Rooney, personal communication, 1994), and certainly resulted in a great deal of enjoyment for all who attended. The longer-term benefits on disease outcome had not been assessed by any unit. School holiday therapy days. One unit arranged therapy schools for groups of arthritic children and adolescents during school holidays. A series of activities was organized, including joint and physical fitness exercises, hydrotherapy, swimming and games. Also included were fine motor activities, such as arts, craft, cookery, disease education (through quizzes) and video making. Although the main aims of the therapy days were to provide intensive therapy and improve the general level of fitness of the children attending, other benefits included social interaction and mutual support, improved self-confidence and promotion of positive self-image. Independence training for adolescents. It was generally accepted that the needs of adolescents with

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TABLE II A comparison of splinting materials used at five paediatric rheumatology centres UK SF Van Made by
Cost

Material I. Leather Orthotist 150.00 per pair 1. Durable 1. 2. 3. 4.

Advantages

00

(a) Thick, rigid

3> </
X

(b) Lightweight, supple O/T 1.80 per sq. ft 1. Lightweight, durable, supple 2. Conform* well to the hand 3. Can be decorated to individual design: increases acceptability 4. Breathable 1. Lightweight 2. Durable

o c z
r
!

Disadvantages Conforms to the hand poorly Cosmetically unacceptable to child Often restricts hand function Takes > 1 month (three visits to hospital: casting, first and final fitting with ortbotist) 5. Not adjustable once made 1. More labour intensive than thermoplastic: involves taking a plaster cast of hand 2. Only minor adjustments once finished

2. High-temperature thermoplastics, e.g. polyethylene

cyr
O/T

Very cheap material

X m

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3. Low-temperature thermoplastics, e.g. Orfit, Turbocast 30.49 60 x 43 cm (Turbocast) 30.00 (Orfit)

1. 2. 3. 4. 1. 2. 3. 4.

Uncomfortable: no 'give' in material More equipment needed: ovens Labour intensiveinvolves castings Sweaty to wear Sweaty to wear Equipment needed: heat gun, splint baths Shape can change inadvertently Comfort questionable

o
Poor fit: universal sizes are often ineffective and conform poorly to the hand/deformities

4. Prefabricated

Various companies

1. Splints can be made quickly 2. Material memory: allows for 'mistakes' 3. Splints can be reused and remoulded 4. Assorted colours: acceptable to child 5. Conforms well to the hand 6. Light and durable 918 approximately 1. Time saving per pair 2. Soft materials: often very comfortable and lightweight 3. Choice of colours

SF, San Francisco; Van, Vancouver; O/T, occupational therapist.

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arthritis differed considerably from those of children with arthritis. One voluntary organization has been developed with the prime aim of fostering self-efficacy and independence in adolescents and young adults with arthritis. One unit had successfully implemented an independence training programme for adolescents, which took place in a self-contained youth hostel over a weekend period. Cooking, cleaning and boundary/ rule setting were the responsibility of the teenagers, with therapists acting as facilitators only. The venture has not been fully evaluated; however, positive feedback has been received from the participants (J. Hackett, personal communication, 1995). DISCUSSION From this series of visits by paramedical staff to five paediatric rheumatology centres in the UK, USA and Canada, it was clear that all therapists aspired to provide the best possible care for children with arthritis. There were many areas of consensus in the philosophy and approach to the treatment of JCA, including the need for a team strategy, physical and occupational therapy intervention early in the disease course and the concern that poor compliance may limit the effectiveness of such interventions. Important differences between the units included the timing of physiotherapy exercises, the monitoring of joint range of movement and the approach to acute arthritis. The use of intermittent 'bursts' of physiotherapy has the potential advantage of improved compliance with treatment, as it minimizes the disruption to the child's and family's life, is supervised closely and allows the patient to attain achievable goals. However, it is unlikely that the most severe forms of arthritis could be managed adequately using this approach, as joint deformity and contracture may occur quickly [3]. This approach would also not necessarily foster any local community expertise in the physical therapy of JCA. Additionally, it is possible that the child might see the intermittent nature of the treatment as being a form of punishment for poor disease control. Perhaps most challenging were the differences in approach to the treatment of the acutely inflamed joint. The force applied to acutely arthritic limbs during assisted joint range of movement exercises differed noticeably between units, from a 'no painno gain' approach to a much gentler and possibly kinder approach. This observation extended to the use of weighted isotonic muscle exercises, in which the patient with acute arthritis may be forced to maintain muscle bulk at the risk of patient and parent alienation. From first principles, it would seem sensible to ensure that the patient's pain is reduced with adequate non-steroidal anti-inflammatory drugs and that joint effusions are minimized with arthrocentesis and intra-articular corticosteroids if necessary, before aggressive physiotherapy is employed. It was noted that no unit appeared to have a co-ordinated approach to redressing the lack of controlled scientific information available in thefieldof

paramedical intervention in paediatric rheumatology. This was felt to be due to a lack of time rather than a lack of interest. Since JCA is known to be a labour-intensive disease, therapists have a duty to their patients to prove the eflkacy of their interventions [1,6]. With the increasing requirements for health service accountability, prospective analysis of physical and occupational therapy interventions for chronic arthritis in children is becoming more important. Within the UK, the British Paediatric Rheumatology Group members are planning a multicentre trial of some of these interventions.
ACKNOWLEDGEMENTS

The visits to paediatric rheumatology units were supported financially by the Arthritis and Rheumatism Council for Research. The authors would like to extend their particular thanks to the units concerned for their warm welcomes, great hospitality and the valuable time they devoted to the visits. The UK organizations involved in quality-of-life and independence training for children and young adults with arthritis include the Children's Chronic Arthritis Association (CCAA), 47 Battenhall Avenue, Worcester WR5 2HN and Young Arthritis Care, 18 Stephenson Way, London NWl 2HD.
RJ2TIRENCES

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1. Southwood TR, Malleson PN. The team approach. In: Southwood TR, Malleson PN, eds. Arthritis in children and adolescents. London: Bailliere Tindall, 1993:729-^3. 2. Emery HM, Bowyer SL. Physical modalities of therapy in pediatric rheumatic disease. Rheum Dis Clin North Am 1991;17:1001-14. 3. Kirchleimer JC, Wanivenhaus A. Declines in the range of motion and malalignment in hands of patients with juvenile rheumatoid arthritis studied over 6 years. J Rheumatol 1990;17:1653-6. 4. Giannini MJ, Protas EJ. Comparison of peak isometric knee extensor torque in children with and without juvenile rheumatoid arthritis. Arthritis Care Res 1993;6:82-8. 5. Oberg T, Karsznia A, Andersson Gare B, Lagerstrand A. Physical training of children with juvenile chronic arthritis. Scand J Rheumatol 1994;23:92-5. 6. Jarvis R. Physiotherapy for juvenile arthritis. In: Woo P, White PH, Ansell BM, eds. Paediatric rheumatology update. Oxford: Oxford University Press, 1990:90-8. 7. Southwood TR, Malleson PN. The clinical history and physical examination. In: Southwood TR, Malleson PN, eds. Arthritis in children and adolescents. London: Bailliere Tindall, 1993:663. 8. Ferrari J, Woo P, Rooney M. Calcaneal stance and hindfoot pain in Juvenile Chronic Arthritis (JCA). Proceedings of the 66th Annual Meeting of the EPA 1994;G87:61. 9. Emery HM. Rehabilitation of the child with juvenile chronic arthritis. In: Southwood TR, Malleson PN, eds. Arthritis in children and adolescents. London: Bailliere Tindall, 1993:806-7. 10. Stcfl ME, Shear ES, Levinson JE. Summer camps for juveniles with rheumatic disease: Do they make a difference? Arthritis Care Res 1989;2:10-5.