Pediatric Rheumatic Diseases (Rheumatologic Rehabilitation Series, Vol 3) Melvin JL, Wright FV, eds. Bethesda, MD 20814-3425, American Occupational Therapy Association, 2000, paperback, 326 pp, illus, ISBN: 1-56900-087-5, $58.
This book is the third volume of the 5-volume series, Rheumatologic Rehabilitation, which emphasizes a team approach to rehabilitation and focuses on educating physical therapists and occupational therapists in the care of patients with rheumatic disease. A total of 86 authors from several disciplines contributed to this volume.
This book contains 13 chapters, 3 appendixes that provide specific information on treatment techniques, and a fourth appendix that describes a functional assessment tool for use in pediatric rheumatology. Each of the first 4 chapters-"Juvenile Rheumatoid Arthritis," "Spondylarthropathies in Children," "Connective Tissue Diseases in Children," and "Chronic Noninflammatory Pain Syndromes"-are written by a team consisting of a pediatric rheumatologist, a physical therapist, and an occupational therapist. Each chapter describes the epidemiology, immunology, diagnostic criteria, clinical manifestations, management, prognosis, and outcomes of one of the most common rheumatic diseases of childhood. Figures and tables are used liberally throughout the text to illustrate clinical descriptions and to summarize important information.
Chapter 1 provides a comprehensive description of the clinical subtypes of juvenile rheumatoid arthritis URA), the physical sequelae of chronic inflammation, and generally accepted surgical and rehabilitation methods for each joint. Much of this information is repeated in the later chapters on occupational therapy and physical therapy. Nutritional problems, very common in children with JRA, are given only the briefest mention, and current references on this topic are not included. Chapter 2 provides information on juvenile ankylosing spondylitis, juvenile psoriatic arthritis, Reiter syndrome, and arthritis with inflammatory bowel disease. In chapter 3, the authors describe the diffuse idiopathic inflammatory diseases of systemic lupus erythematosus, juvenile dermatomyositis, and scleroderma. Chapter 4 discusses the etiology and pathogenesis, clinical manifestations, and treatment of localized and diffuse idiopathic noninflammatory pain syndromes in children, (including growing pains, reflex sympathetic dystrophy, and juvenile fibromyalgia syndrome). The information on management of these conditions is based primarily on studies of adults with reflex sympathetic dystrophy or fibromyalgia syndrome. This information, however, should be of significant help to therapists working with the growing number of children and adolescents who have diffuse and chronic idiopathic musculoskeletal pain and fatigue.
The next 3 chapters deal with the developmental perspectives in the examination and treatment of children with rheumatic diseases, the issues and problems related to adherence to medical and therapeutic regimens, and the psychosocial issues surrounding pain in children with arthritis and other chronic rheumatic diseases. Chapter 5 reviews the impact of chronic rheumatic disease on the motor, psychosocial, and cognitive development of children from early childhood to adolescence. Summary tables list the children's skills normally achieved by children at various stages of development, the restrictions imposed by arthritis, and the recommended therapeutic interventions. The sections on psychosocial and cognitive development illustrate how the children's understanding of the disease process affects their participation in management of their condition. In chapter 6, Michael Rapoff, a well-known researcher in the area of adherence, discusses tools to measure adherence, factors related to nonadherence, the consequences of nonadherence to therapeutic regimens, and strategies for improving adherence. Because nonadherence to exercise and splinting regimens is common among children and adolescents with rheumatic disease, the strategies offered by Rapoff should prove useful.
Chapter 7, "Pain in Children: Psychosocial Issues," is one of the strongest chapters in this book. Pain is often unappreciated in children with arthritis because of the difficulties in assessing the intensity and quality of pain in young children. The authors, Anita Unruh and Patrick McGrath, review the measurement and evaluation of pain; the interaction of pain, anxiety, and depression; and the impact of the child's pain on other family members. Psychosocial interventions for pain management are discussed in detail. The authors stress the multidisciplinary nature of pain management, stating that pharmacological treatment must often be used in conjunction with physical and psychosocial interventions. The reader is referred to the chapters on occupational therapy and physical therapy for information on physical strategies.
Chapters 8 and 9 cover occupational therapy and physical therapy for children and adolescents with juvenile rheumatoid arthritis. Chapter 8 describes the evaluation of self-care and play skills and school and community participation. The section on treatment includes very useful information on splinting, joint protection, and assistive and adaptive technology. Specific attention is paid to the selection of suitable activities for children with arthritis, based on the child's physical needs and abilities and the biomechanics of activity. The chapter on physical therapy describes the musculoskeletal examination and the assessment of gait and posture. The author provides recommendations for treating impairments of joint motion and muscle strength and deviations of posture and gait. One strength of this chapter is the section on functional mobility and developmental stages, which is well written and should prove useful to the reader. Physical interventions for pain management are provided, although the author states that research in this area is lacking. Several areas, however, are given only general attention. For example, only one paragraph is devoted to the assessment of functional abilities, and the reader is referred to chapter 10 for a more complete discussion. Treatment recommendations for improving muscular strength and aerobic endurance are based primarily on tradition rather than specific research findings. This emphasis reflects the general paucity of physical therapy research in this area. However, several recent studies related to muscle strength and function and the effects of land-based aerobic conditioning in children with JRA are not discussed.
Chapter 10 provides a historical perspective on educational legislation in the United States and Canada related to children with rheumatic disease. The authors briefly discuss the need for vocational counseling, but they do not mention specific guidelines for transition services for students with disabilities. The chapter also does not refer to the manual, Educational Rights for Children With Arthritis, produced by the American Juvenile Arthritis Organization, a family support organization dedicated to helping parents and children live with rheumatic disease. However, 2 very useful tables are provided. The first illustrates implementation of an individualized educational program for a child with arthritis, listing problems and potential solutions. The second table provides a comprehensive checklist to identify the child's strengths and needs within the school environment.
Chapter 11, "Measurement of Outcome in Juvenile Rheumatoid Arthritis," is well written and provides extremely valuable information for the physical therapist or occupational therapist who specializes in rheumatology. The author discusses outcome measures designed specifically for use in pediatric rheumatology as well as other measures of impairment, activity, and participation suitable for use in children with arthritis. The author effectively uses several case scenarios to illustrate the need to measure outcomes across several domains. Guidelines are provided for choosing a core set of outcome measures, deciding when outcomes should be evaluated, and interpreting change.
Chapter 12, "Surgical Treatment of Juvenile Rheumatoid Arthritis," is written collaboratively by 2 pediatric orthopedic surgeons and the 2 coeditors. The authors describe the surgical options and the importance of staging for both upper- and lower-extremity surgeries for JRA. The surgeries and postoperative management are discussed, although the reader is referred to a more detailed discussion of rehabilitation in another volume of the series.
The final chapter contains 3 case studies: a young boy with pauciarticular JRA, an adolescent girl with polyarticular JRA, and an adolescent girl with juvenile dermatomyositis. Each case illustrates the multidisciplinary examination, assessment, and treatment strategies used to manage the often erratic course of these childhood diseases. The first case especially demonstrates the use of child and family education, and strategies to improve adherence to therapeutic and medical regimens.
The strengths of the book include its emphasis on multidisciplinary care of the child with rheumatic disease. The chapters on pain, occupational therapy, and measurement of outcomes and the chapter containing case studies are very good. The appendixes on procedures for serial casting, self-management of Raynaud phenomenon, and temporomandibular joint arthritis provide practical information and should prove useful to most therapists. The fourth appendix, which illustrates items from the Juvenile Arthritis Functional Assessment Report for Children JAFAR) is less helpful, because this assessment tool is rarely used. The reference provided for this instrument actually refers to another assessment tool, the Child Health Assessment Questionnaire (CHAQ), which is the tool used in most clinics to assess functional abilities in children with arthritis. It is unclear why the authors chose to use the JAFAR rather than the more widely used and validated CHAQ.
This book would be a useful addition to the library for the physical therapist or occupational therapist who is new to the field of rheumatology. However, it is not a sufficient resource by itself. The reader is often referred to other volumes in the series for more detailed information on a topic, suggesting that it is necessary to purchase the entire series. In addition, several recent clinical research findings on the evaluation and management of specific problems in children with rheumatic disease are missing, possibly because of the time lag between the completion of the text and its actual publication.
Copyright American Physical Therapy Association Dec 2000
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