Garmisch Therapeutic Approach
Since the cause of chronic rheumatic illnesses remains unknown, treatment of the underlying cause is not possible. Children with a chronic rheumatic illness nevertheless respond well to a special multidisciplinary programme of treatment in most cases. This treatment requires a team of experienced doctors and therapists. The overall concept is primarily based on the three pillars of medical treatment, physiotherapy and psychosocial care. The long-term prognosis, however, is based on the assumption that additional measures will be included in the therapy from the outset. These measures include educating patients and parents and providing social care for the whole family.
Medical therapy
The first thing needed by every child with a rheumatic illness is drug therapy. Pain and inflammation can be relieved using non-steroidal antirheumatics (NSAR). If these drugs are not sufficient in themselves, an indication is given for long-term treatment with ‘basic drugs’. New forms of therapy using ‘biologicals', particularly anti-TNF-α therapy, have grown enormously in importance since the introduction of Etanercept (Enbrel®) for the treatment of juvenile idiopathic or chronic arthritis, including for children and adolescents. On the other hand, these initial positive findings are tempered by concerns over the existence of long-term side effects. The use of cortisone preparations as systemic medication should be used only under strict indications for children. They are however essential in local therapy applied to the eyes to treat iridocyclitis. If arthritis in certain individual joints is a primary concern, an intra-articular injection of a cortisone preparation can act locally to soothe the inflammation. Once in a while, operations are also indicated for children. The most frequent operations indicated are synovectomies, i.e. the surgical removal of the inflamed joint membrane, which are chiefly contemplated for therapy-resistant mono- or oligoarthritis. It is important that any such operation be followed by intensive aftercare for 3-4 weeks under stationary requirements. Otherwise, functional damage can occur in the long term, even if the operation was carried out correctly. It is extremely important to warn of operating procedures (including joint biopsies) on small children, as small children are liable not to cooperate during the aftercare.
Corrective operations can sometimes be useful to remedy pronounced incorrect joint positions. Occasionally, joints that have been destroyed and are extremely painful may require a partial or complete arthrodesis (joint stiffening). For adolescents or young adults, radically destroyed hip or knee joints may also need to be replaced. A comprehensive article on drug therapy is available here.
The first step of the medical treatment is usually carried out by the treating paediatrician. Then patients are introduced to a comprehensive treatment programme by experienced paediatric rheumatologists, who also carry out long-term monitoring to take account of any necessary changes to the therapy. Ideally this will take place once or twice per year in a specialised centre. The care team includes specialists such as ophthalmologists, orthopaedists, dermatologists or orthodontists. The on-site paediatrician remains the point of contact in the event of problems. A combination of outpatient care close to the patient’s place of residence and stationary treatment in specialist paediatric rheumatology units or in special clinics such as the German Centre for paediatiric and adolescent Rheumatology in Garmisch-Partenkirchen has proven effective.
Physiotherapy
Physiotherapy primarily involves providing individual medical gymnastics. Most children require treatment involving physical measures as a complement to the gymnastics. Application of support devices also forms part of this therapeutic discipline.
Medical gymnastics
As soon as restricted movement or incorrect joint positions start to become evident in a rheumatic child, medical gymnastics must be introduced. The emphasis here is on individual treatment. The therapy must be designed so that it is appropriate for children. With empathy and a little imagination, even small children can be treated successfully. Medical gymnastics must always take place in the absence of pain. A step by step programme following the Garmisch physiotherapeutic treatment approach has proven effective. This approach is based on the previous finding that pain is the source of restrictions in movement and incorrect joint positions. Children often do not complain directly about joint pain; instead, they subconsciously place the affected joint in a relieving posture that alleviates the pain. This produces a muscular imbalance between hypertonic muscles used to maintain the joint in its incorrect position and muscles that are no longer used in order to prevent pain in the joint. If this muscular imbalance is not addressed in good time, permanent incorrect positions and deformities can result that are difficult to correct at a later stage. Ideally, medical gymnastics should therefore take place in the early stages of the condition, before the pain-relieving position has become permanent. Treatment begins with a slow, passive or active-assistive movement of the affected joint in order to relieve the pain. In the early stage these exercises can increase the range of motion of the joint. If contractures have already developed, the shortened musculature must be stretched over an extended period of time. Children can be encouraged to cooperate during this process by reading aloud to them, telling them stories or letting them listen to music. Once a sufficient degree of motion in the joint has been restored and any significantly incorrect axial positions have been corrected, the active exercises can begin. Children must learn how to tense deliberately muscles that have become neglected and hypotonic. The next step is to put this recovered mobility to use in daily activities. Normal work movements must be facilitated and practised Further information here.
Physical measures
These are primarily employed in order to alleviate pain, inhibit inflammation and relax muscles. For acutely inflamed and painful joints, cold compresses such as ice cubes, alcohol bandages or chilled curd cheese bandages can help. Warmth is applied locally to relax hypertonic muscles. It should not be applied to the joint area until the inflammation has subsided, however. With the help of various massage techniques, muscle tensions and fascial adhesions can be relieved. One treatment noted for its pain-relieving and muscle-relaxing properties is electrotherapy, such as when used as interference or high-voltage therapy. Treatment with transcutaneous electrical nerve stimulation (TENS) can also be administered for local pain relief. TENS devices are small and easy to use, which makes regular treatment at home possible. Movement baths with water temperatures of around 30°C allow children to let off steam. This form of treatment promotes a sense of movement and joie de vivre.
Support devices
Support devices must be adapted to fit each individual patient and are primarily used to protect the joint. With arthritis of the hand joints, functional splints are required that protect against incorrect positions. They also have analgesic effects and improve strength transmission from the forearm to the fingers. The hand splint must be used daily and writing and painting movements must be practised intensively. Contractures in finger joints are treated using support splints, preferably to be worn at night. Simple plaster splints have proven effective in supporting the treatment of knee and elbow joints for contractures. These splints are manufactured for each individual joint in question and are applied to the joint for approximately half an hour at a time, ideally just after the stretching exercises carried out as part of medical gymnastics. Arthritis in the lower extremities mostly requires partial relief. Appropriate pain-relieving vehicles for the patient’s age, such as tricycles, therapeutic strollers or bicycles, are suitable here. Older children can also obtain relief from crutches, if their upper extremities are less severely affected. Wheelchairs are unsuitable for rheumatic children. The act of sitting with bent hip and knee joints increases the likelihood of contractures forming in these joints and threatening their movement. Children who spend extended periods in a wheelchair often develop footdrop (equinus position). For arthritis in the hip and shoulder joints, treatment in a sling cage or on a sling table has proven effective. A simple sling installation can even be constructed at home. Moving the joints unhindered to the limit of their range of movement improves intra-articular metabolism, inhibits destructive processes and promotes the reconstruction of previously damaged joint structures. Affected foot joints need to be fitted with soft insoles. Corrective insoles are recommended if the foot can be put to physiological use under load and without pain. For permanent incorrect positions, the insoles must cushion the foot gently whilst supporting the incorrect position.
Occupational therapy
Occupational therapy is primarily indicated, as an extension to medical gymnastics, for children with arthritis in their hand or finger joints. The therapy focuses on functional training. By writing, painting or modelling, children learn to put their newly acquired physiological movement patterns into practice. Hand/finger function is trained at the same time. Different craft materials such as clay, modelling clay or finger paints stimulate the hands’ sensorimotor function. One important contribution made by occupational therapy is that it informs and trains patients how to protect their joints. Younger children are taught these skills through the medium of play. Older children and adolescents are given specific advice about how to deal with problems in everyday situations. Patients practice collectively, e.g. by cooking in small groups. More severely disabled patients need additional guidance in order to achieve independence and autonomy. Support devices to help with personal hygiene or household tasks are sometimes required. These will frequently need to be adapted to meet the needs of each individual patient.
Resilience in everyday situations
In the acute stage, rheumatic illnesses restrict the amount of stress the body can bear. Children faced with severe pain will deliberately avoid movement. Often, however, rheumatic children are observed playing boisterously and participating in sport with no apparent difficulties in spite of considerable swellings in their joints. A child’s distinctive need to keep moving and enthusiasm for sport ensure that the body remains active. When an affected joint is under stress, however, the children will inevitably place it in a relief position to minimise the pain. This contributes to the development of incorrect positions and worsens the prognosis for the joint. Acutely inflamed joints must therefore not be placed under stress. On the other hand, rheumatic children should be active in order to stimulate the metabolism and growth in the joint area and to prevent osteoporosis. The principle behind the therapy is ‘movement without stress'. In this regard, swimming and cycling are therapeutic sports. Bicycles can be used as a mode of transport in order to avoid having to cover longer routes on foot. Other sports should be avoided during acute attacks. When the inflammation of the joint recedes, the children can begin to take steps towards reintegrating sport into their lives.
Training patients and instructing parents
The prognosis for rheumatic illnesses in children and young people relies completely on the cooperation of the patient and/or the parents. To ensure good compliance, comprehensive information about the illness and the possible ways of treating it is needed. In particular, the need for each individual therapeutic measure must be underlined in detail. For older children and young people, experts in Germany have developed a training programme that is divided into six units: clinical picture; drugs; medical gymnastics; ccupational therapy; coming to terms with the illness; and social legal aspects. Ideally, this training should take place in small groups of patients with similar clinical pictures. Parents can also be trained in the same fashion. The training programme is now offered at regular intervals at numerous German centres for paediatric rheumatology. Other suitable forums for information and training are parents’ evenings or group meetings with young people in which any burning questions or problems from participants can be discussed collectively. Group training does not replace individual briefings. From the outset, parents (and the patients, where possible) should be informed about the illness and involved in the therapy. Ideally, a parent should be present for at least part of the time during each residential stay at the Specialist Clinic. Giving patients qualified training ensures that they will be able to continue the therapy consistently and successfully at home. Parents can and should carry out physical measures such as cold or warm compresses and medical gymnastic exercises with their child on a regular basis. Older children can over time assume the responsibility for administering their own treatment. As parents become more experienced, they learn to recognise whether the behaviour and movement patterns of their child indicate a worsening in the situation. They can thus arrange for the therapy to be intensified in good time. Further information here.
Sociomedical work
The long-term treatment of a chronically ill child involves more than just medical care and rehabilitation. It is just as important for the child to be accompanied by employees of Social Services who are experienced in dealing with the numerous problems of rheumatic children and their families.
Social legal advice
Chronic illness is accompanied by significant additional expenditure for the family in terms of both time and money. Parents are provided with information about the different grants and aids offered by the German State to address this problem. Some of the services are tax-deductible. Expenditure incurred that is directly connected with the therapy may be covered by health insurance. Depending on the severity of the disability, the patient may be entitled to a disabled badge or an allowance for nursing care. One important function of Social Services is to provide advice on how the situation at school can be made easier and advice on vocational training. If necessary, for example, the child can receive a second set of schoolbooks. Alternatively, time extensions can be granted for schoolwork, if the hand and finger joints are affected. After consultation with the teacher, the disabled child’s classroom can even be relocated to the ground floor. Social Services provide career advice for young people in consultation with the treating doctor and therapists. This advice will be primarily centred on the patient’s interests and personal preference, but will also take account of his or her physical resistance and the length of time for which the illness is expected to last. If finding employment proves difficult, measures may be taken to prepare a workplace for the patient. An appropriate workplace layout can often make it easier for patients to exercise their chosen career. Further information here.
Psychological care of patients and family
Chronic illness moves through several phases, and each phase has its own challenges that the whole family will have to meet time and time again. This begins with the uncertainty before the illness is diagnosed, followed by shock that a chronic illness has been diagnosed, and finally the ups and downs of the course of the illness itself. An individual accompaniment must be provided for each affected person from the outset. Alongside medical information, parents, patients and siblings need spiritual support in order to face the many questions and problems with which they are being bombarded. An experienced social education worker or psychologist can offer practical help on daily life with a rheumatic child, such as with questions on bringing up the child or structuring the daily routine to take account of his or her additional needs. He can also provide reassurance to patients or family members seeking to come to terms with and meet the demands of the illness. If the illness has started to have deep-seated effects or to interfere with relationships within the family, psychological family therapy should be provided in good time.
Self-help groups and parents' associations
Groups for parents of rheumatic children and young people exist all over Germany. They form part of the German Rheumatism League. In these groups, parents of affected children work to pass on their experiences, advise and accompany families with a sick child of their own. Alongside this, they have set themselves the goal of informing the public about rheumatic illnesses in children and adolescents and of helping to improve medical and social care. The parents' groups work in close collaboration with specialists, therapists, health insurance providers, administrations, ministries, etc. They organise collective information events or optional meetings to exchange experiences. Individual advice is also provided via contact points, which are set up in some clinics, or by telephone on the "Rheumafoon". The parents' groups also have an extensive library of information material, which they provide free of charge on request. For many parents, the parents' groups represent a sensible, practical lifeline. They often find that the groups provide the spiritual support they need. They recognise how much of a relief it can be to talk with a group of people who identify with the uncertainties they are feeling, without the need to explain everything in detail. For affected young people and young adults who want to take responsibility for treating their own illness, Young Rheumatics groups exist within the Rheumatic League. These groups, normally based in large cities, typically organise regular meetings to permit people to exchange experiences, organise seminars on topics of particular interest to them, maintain international contacts with affected young people from other countries and provide telephone advice via their own "Rheumafoon". Further information here.
Summary
Chronic rheumatic illnesses in children place therapeutic demands not only on paediatric rheumatologists but on a whole team of specialists and therapists. In addition to outpatient care, most patients need hands-on treatment at a specialised paediatric rheumatology clinic. Early, consistent and intensive therapy is important if subsequent damage is to be avoided. As part of therapy, medical treatment acts in complement to physiotherapy, including ccupational therapy, physical measures and the provision of support devices, and sociomedical and psychological care. Parents' associations provide an essential contribution to treatment by 'helping people to help themselves'.
Head of Department Dr. Hartmut Michels
Assistant Head of Department Dr. Renate Häfner
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