Book contents
- Frontmatter
- Contents
- List of contributors
- Preface
- 1 Histiocytic disorders of children and adults: introduction to the problem, overview, historical perspective and epidemiology
- 2 The diagnostic histopathology of Langerhans cell histiocytosis
- 3 Histiocyte function and development in the normal immune system
- 4 The immunological basis of Langerhans cell histiocytosis
- 5 The genetics of Langerhans cell histiocytosis
- 6 Langerhans cell histiocytosis: a clinical update
- 7 Histiocytosis of the skin in children and adults
- 8 Langerhans cell histiocytosis of bone
- 9 Special aspects of Langerhans cell histiocytosis in the adult
- 10 Adult lung histiocytosis
- 11 Central nervous system disease in Langerhans cell histiocytosis
- 12 The treatment of Langerhans cell histiocytosis
- 13 Treatment of relapsed and/or refractory Langerhans cell histiocytosis
- 14 Late effects of Langerhans cell histiocytosis and its association with malignancy
- 15 Uncommon histiocytic disorder: the non-Langerhans cell histiocytoses
- 16 The histopathology of hemophagocytic lymphohistiocytosis
- 17 Genetics and pathogenesis of hemophagocytic lymphohistiocytosis
- 18 Clinical aspects and therapy of hemophagocytic lymphohistiocytosis
- 19 Secondary haemophagocytic syndromes associated with rheumatic diseases
- 20 Malignancies of the monocyte/macrophage system
- 21 Psychosocial aspects of the histiocytic disorders: staying on course under challenging clinical circumstances
- Index
- Plate section
21 - Psychosocial aspects of the histiocytic disorders: staying on course under challenging clinical circumstances
Published online by Cambridge University Press: 27 August 2009
- Frontmatter
- Contents
- List of contributors
- Preface
- 1 Histiocytic disorders of children and adults: introduction to the problem, overview, historical perspective and epidemiology
- 2 The diagnostic histopathology of Langerhans cell histiocytosis
- 3 Histiocyte function and development in the normal immune system
- 4 The immunological basis of Langerhans cell histiocytosis
- 5 The genetics of Langerhans cell histiocytosis
- 6 Langerhans cell histiocytosis: a clinical update
- 7 Histiocytosis of the skin in children and adults
- 8 Langerhans cell histiocytosis of bone
- 9 Special aspects of Langerhans cell histiocytosis in the adult
- 10 Adult lung histiocytosis
- 11 Central nervous system disease in Langerhans cell histiocytosis
- 12 The treatment of Langerhans cell histiocytosis
- 13 Treatment of relapsed and/or refractory Langerhans cell histiocytosis
- 14 Late effects of Langerhans cell histiocytosis and its association with malignancy
- 15 Uncommon histiocytic disorder: the non-Langerhans cell histiocytoses
- 16 The histopathology of hemophagocytic lymphohistiocytosis
- 17 Genetics and pathogenesis of hemophagocytic lymphohistiocytosis
- 18 Clinical aspects and therapy of hemophagocytic lymphohistiocytosis
- 19 Secondary haemophagocytic syndromes associated with rheumatic diseases
- 20 Malignancies of the monocyte/macrophage system
- 21 Psychosocial aspects of the histiocytic disorders: staying on course under challenging clinical circumstances
- Index
- Plate section
Summary
The course of the histiocytic disorders is unpredictable. The natural history and response to treatment is variable and uncertain. As development proceeds, the impact of the illness and its treatment can range from negligible to increasingly complex. Each patient and family brings a unique complement of strengths and vulnerabilities to dealing with a life-threatening illness. Children and adults with permanent severe late effects pose unique and, sometimes, disheartening challenges. These challenges include neuropsychologic deficits (Whitsett et al., 1999; Nanduri et al., 2003), in particular, retardation, and neuropsychiatric conditions, such as uncontrollable sexual excitement or emotional labiality. Unfortunately, these patients may respond sub-optimally or not at all to specialized medical or psychologic management approaches.
In a previous publication, Simms and Warner (1998) describe a framework for understanding and responding to the psychosocial needs of children with the commonest of the histiocytic disorders, Langerhans cell histiocytosis (LCH), and their families. Providers are encouraged to use five cardinal points when addressing psychosocial concerns. The five points are:
Attend to the provider–family relationship.
Emphasize that LCH imposes changes on family life.
Recognize that LCH can affect normal development.
Build collaborative relationships with family members.
Focus on competence (i.e. the ability to cope).
This framework is applicable to difficult clinical situations associated with the histiocytic disorders, in particular, noncompliance, permanent severe consequences, and death.
- Type
- Chapter
- Information
- Histiocytic Disorders of Children and AdultsBasic Science, Clinical Features and Therapy, pp. 408 - 416Publisher: Cambridge University PressPrint publication year: 2005