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Occupational Therapy in Epidermolysis bullosa

Occupational Therapy in Epidermolysis bullosa

A holistic Concept for Intervention from Infancy to Adult

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Epidermolysis bullosa (EB) is the collective term for a heterogenous group of genetic skin disorders characterised by the formation of blisters and erosions on skin and mucous membranes.

This book deals with early childhood motor and perceptual development, a particular challenge for children with extremely fragile skin. Going into functional treatment, it addresses rehabilitation of hands and feet in EB patients with fusions or contractures.

The authors are occupational therapists with long-term experience in the management of EB patients. In an extraordinary holistic approach, they present a combination of paediatric and functional areas of treatment.

Occupational therapy tools and interventions can help alleviate a number of accompanying complications and symptoms of EB, enhance self-care, and improve quality of life in general.

Due to its practical approach, this book not only serves as a unique guide for doctors and health care professionals but is also comprehensible and useful for patients.


1 Epidermolysis bullosa (EB) – the condition.-

1.1 Definition.-

1.2 Pathology of EB.-

1.2.1 EB simplex (EBS).-

1.2.2 Junctional EB (JEB).-

1.2.3 Dystrophic EB (DEB).-

1.3 The most common sub-types and their signs and symptoms.-

1.4 The most common cutaneous and extra-cutaneous complications.-

1.5 Diagnosis.-

1.6 Therapy.-

2 Motor development in early childhood.-

2.1 Motor development screening.-

2.1.1 Typical development of motor ability.-

2.1.2 Assessment of children with EB.-

2.1.3 Parental questionnaire focusing on the early motor development.-

2.2 Results from motor development screening.-

2.3 Occupational therapy.-

2.3.1 Advising parents.-

2.3.2 OT intervention focusing on the early motor development.-

3 Treatment of the tactile, vestibular and proprioceptive perception.-

3.1 Hypotheses concerning perception.-

3.1.1 The relevance of tactile, vestibular and proprioceptive perception to child development.-

3.2 Assessment of perception.-

3.2.1 Clinical observation of children with EB – considerations.-

3.2.2 Useful additions for children with EB.-

3.3 Assessment results.-

3.3.1 Discussion of the results.-

3.4 Occupational therapy.-

3.4.1 OT intervention focusing on the development of perception.-

4 Development of hand functions.-

4.1 Development of prehension (grasp).-

4.2 Possibilities for assessment of children with EB.-

4.3 Assessment results.-

4.4 Occupational therapy.-

5 Graphomotor skills.-

5.1 Development of pencil grasp and of drawing skills.-

5.2 Assessment of children with EB.-

5.2.1 'Graphomotorische Testbatterie'.-

5.2.2 Observation of drawing and writing.-

5.2.3 The 'Mann-Zeichen-Test'.-

5.3 Assessment results.-

5.4 Occupational therapy.-

5.4.1 OT intervention focusing on drawing and graphomotor skills.-

6 Independence in everyday life and provision of assistive devices.-

6.1 Assessment of children with EB.-

6.1.1 Parental questionnaire focusing on the coping skills of children with EB in everyday life.-

6.2 OT intervention focusing on everyday life and use of assistive devices.-

6.2.1 Self-care.-

6.2.2 Mobility / Locomotion.-

6.2.3 Leisure / Hobbies.-

6.2.4 Kindergarten (nursery) / School / Work.-

6.2.5 Barrier-free living.-

7 Client-directed therapy using the COSA.-

7.1 Client directed practice.-

7.2 What is COSA?.-

7.2.1 Contents and structure of COSA.-

7.3 Client-directed assessment and therapy for children with EB using the COSA.-

7.3.1 Additions to the ‘Intended Meaning Reference Guide’ for children with EB.-

7.3.2 Additional items for children with EB.-

7.3.3 Formulating goals.-

8 Rehabilitation of the hand.-

8.1 Pathophysiology of the hand.-

8.2 Contractures and deformities.-

8.2.1 Fingers.-

8.2.2 Thumb.-

8.2.3 Palm and arches of the hand.-

8.2.4 Wrist.-

8.2.5 Interdigital spaces.-

8.2.6 Causes of contractures and their relevance to daily life.-

8.2.7 Pathological changes to the joints due to contractures.-

8.3 Radiological changes.-

8.4 Surgical procedures.-

8.5 Occupational therapy process.-

8.6 Occupational therapy intervention.-

8.7 Occupational therapy assessment.-

8.7.1 Assessment form for the hand – using the AO neutral O-method.-

8.7.2 Assessment form for the hand – range of motion / sensibility / pain / grip forms / dexterity.-

8.7.3 Assessment form for the hand – longitudinal growth und pseudosyndactyly- 

8.7.4 Assessment form for the hand – abduction of the digits.-

8.8 Occupational therapy.-

8.8.1 Aims of intervention.-

8.8.2 Bandaging and compression gloves.-

8.8.3 Splinting for contracture prophylaxis.-

8.8.4 Types of splint for contracture prophylaxis.-

8.8.5 Exercises to prevent deformities.-

8.9 Post-operative occupational therapy after digital separation.-

8.9.1 Aims of treatment.-

8.9.2 Post-operative splinting.-

8.9.3 Post-operative problems.-

8.9.4 Assessment form for the hand – sensibility.-

8.9.5 Training of sensibility.-

8.9.6 Treatment of scars.-

8.9.7 Treatment of oedema.-

8.9.8 Manual therapy.-

8.9.9 Functional exercises after operative digital separation.-

8.9.10 Bandaging to prevent MCP flexion and ulnar deviation.-

9 Rehabilitation of the foot.-

9.1 The foot in people with DEB.-

9.2 Comparison of hand and foot.-

9.3 Anatomy and functional principles of the foot.-

9.3.1 The cuneiform principle.-

9.3.2 The spiral principle.-

9.3.3 The transverse arch.-

9.3.4 How DEB affects these principles.-

9.4 The pelvis and the axes of the legs.-

9.4.1 The pelvis.-

9.4.2 The axes of the legs.-

9.5 The development of the foot and the axes of the legs during growth.-

9.5.1 The new-born baby.-

9.5.2 The infant.-

9.5.3 The toddler.-

9.5.4 The school child.-

9.5.5 Considerations relating to the foot positions and leg axes in people with EB.-

9.6 Malpositions of the foot.-

9.6.1 Pes (talipes) valgus/varus.-

9.6.2 Fallen arches, pes planus (flat-foot), pes planovalgus.-

9.6.3 Pes excavatus (high-arched foot).-

9.6.4 Pes transversoplanus (splay foot).-

9.6.5 Considerations relating to the foot in people with DEB.-

9.7 Assessment.-

9.8 Exercises.-

9.8.1 Exercises for the perception of the feet.-

9.8.2 General functional exercises.-

9.8.3 Mobilisation.-

9.8.4 Functional exercises for the malpositions of the foot.-

9.8.5 Bandaging.-

10 Conclusion.-


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190 Seiten
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