desirable but indeed absolutely vital. The ten points listed below have been chosen to provide a focus on some critical issues and provoke debate on the topic of.
d i s a b i l i t y a n d r e h a b i l i t a t i o n , 2001 ; v o l . 23, n o . 13, 586
CLINICAL COMMENTARY
Commentary on the article by Bakheit et al. `Opinion statement on the minimal standards for healthcare in cerebral palsy’. Disabil Rehabil Downloaded from informahealthcare.com by UB der LMU Muenchen on 08/14/13 For personal use only.
FLORIAN HEINEN Klinikum Duisburg, Klinik fu$ r Kinderheilkunde, Zu den Rehwiesen 9, D-47055, Duisburg, Germany
In times dominated by evidence-based medicine, should one voice any opinion statement concerning cerebral palsy ? I believe that to do so is not only desirable but indeed absolutely vital. The ten points listed below have been chosen to provide a focus on some critical issues and provoke debate on the topic of cerebral palsy : (1)
(2)
(3)
(4)
Cerebral palsy is a disorder of fairly high incidence which has not much changed during the last decade. It contributes substantially to the number of the chronically handicapped. Cerebral palsy is an umbrella-term used for a group of persisting, non-progressive motor disorders. Consequently, each patient requires differential diagnostic classi® cation. To establish a detailed and speci® c diagnosis of cerebral palsy is quite challengingÐ a fact that is not widely appreciated. Depending on medical history and clinical presentation, individual cases may require further investigation using methods that are continually developed into even more sophisticated diagnostic tools such as sonography, nuclear magnetic resonance and clinical neurophysiology. Cerebral palsy cannot be cured. Like many other incurable disorders often no therapeutic eŒort is made at all while other patients are treated with numerous therapeutic approaches. Some therapies are applied for years with the promise that one day they will improve the patient’s condition Ð a promise that more often than not turns out to be quite unrealistic. Unful® lled hope, however, eventually turns into bitter disappointment, with
(5)
(6)
(7)
(8)
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(10)
the outcome that further therapy of any kind may be rejected, especially in adolescents. The outcome of cerebral palsy is not easily predictable. Observing the course of the disease over a substantial period of time remains the most important aspect for establishing a prognosis. Research into cerebral palsy has been neglected. There is a lack of activity not only in basic research but also in the ® elds of clinical and medical care research.Validstudiesintotherapeuticpossibilities are still the exception. Cerebralpalsy is notan isolated motor disturbance. Owing to the complexity of the disorder, special therapeutic settings are required. Cerebralpalsyposesatherapeuticchallenge.Onlya close interdisciplinary cooperation between neuropaediatricians, orthopedic surgeons and physiotherapists does assure adequate long-term care. AŒectedpatientsandtheirfamiliesperceivec erebral palsy as a stigmaÐ a stigma that cannot be hidden from the public eye. These people, therefore, are in need of special support to help them cope with everyday life. Cerebral palsy should not be seen as a condition synonymoustohopelessness.Toth econtrary,those aŒected can greatly bene® t from a sustained and adequate medical eŒort aimed at achieving small improvements at a time.
It is to the credit of the authors that they have applied their own longstanding expertise in developing a sequence of speci® c recommendations aimed to achieve `minimal acceptable ’ standards of healthcare which lead to `maximal e cacy and bene® t ’ for the patient.
