Medical Care for Children and Adults with Developmental Disabilities. Second Edition
Edited by I. Leslie Rubin, M.D., & Allen C. Crocker, M.D. Baltimore, Maryland: Paul Brookes Publishing Co., 2006, 752 pages. ISBN 1-55766-766-7, Price: $125.00. USA (Hardcover)
The second edition of this book has doubled in size and is an invaluable resource to professionals working in the field of developmental disabilities. Edited by Rubin and Crocker, the authors of each chapter are experts from varied specialties in the field.
The first few chapters offer a historical perspective of the field. Information on the development of legislation and systems of medical care for persons with developmental disabilities are presented. Examples of charts used to monitor sleep patterns and a menstrual cycle record are included here. Hints for examination procedures will be extremely helpful to the novice health care provider in this field. A subsection specifically for the nurse practitioner (NP) working with persons with developmental disabilities is very thorough and includes important aspects of care such as Health Care Plans, admission considerations and ongoing education of front-line staff. This section concludes with a short "day-in-the-life" account of a typical week for the NP supporting individuals with a developmental disability. The importance of a well-coordinated, multi-disciplinary approach is emphasized. The variety of the NP's work and the continued adjustment of priorities are also clearly illustrated within this narrative, providing an excellent "snapshot" of the NP's role in the field and the diversity and complexity of care often required for individuals with a developmental disability.
The bulk of the text, however, contains in-depth information on clinical care of this specific population across the lifespan. Opening with discussion of various inborn errors of metabolism (mucopolysaccharidoses, sphingolipidoses and mitochondrial disorders), the text proceeds to cover syndromes of multiple congenital anomalies (spina bifida, VATER and CHARGE associations), genetic syndromes (including Rett, Down, Fragile X, Prader-Willi, Angelman, and Williams syndromes) and phakomatoses (specifically neurofibromatosis (NF1) and tuberous sclerosis). Each syndrome has information on the clinical manifestations, various comorbid medical issues and the genetic mechanisms involved as well as management strategies. Topics covered in subsequent chapters include cerebral palsy, followed by a "review of systems," so to speak, including otolaryngology to orthopedics and all systems in between. Mental health issues are covered in several individualized chapters and include topics such as attention-deficit/hyperactivity disorder, anxiety disorders, depression, self-injury, aggression, pica and crisis management. Separate chapters are devoted to specialized areas of care, including women's health, geriatrics and end-of-life care. These follow several smaller chapters on therapies such as occupational therapy, physiotherapy, speech and language pathology and assistive devices. Severe and profound disabilities and their complexities are covered in yet another chapter. The authors use short vignettes throughout the text, providing actual case examples for the reader. This successful technique adds a real-life aspect to every chapter, demonstrating the value and impact of improving the quality of life for persons with developmental disabilities.
The voluminous text closes with several chapters on values and quality of care issues, including chapters on ethics, abuse and neglect, preventative health care, holistic care and utilization, cost and financing. The final two chapters cover several international experiences in health care for persons with developmental disabilities and international adoption.
This reviewer does have some comments, however, about possible additions to a future edition of this text. For instance, in addition to the references currently given, it would be helpful to augment the text with a list of websites and other online resources at the end of each chapter, particularly in chapters dealing with the syndromes and clinical care. As well as providing additional material, credible websites may offer readers an opportunity to view photos and illustrations that are of a higher quality and resolution than some of the black and white photos in this text. This reviewer also feels that more in-depth coverage of pain assessment in this population would benefit readers. Although a small paragraph appears in the neurological section, and some comments on pain are sprinkled throughout various other sections of the text, a full chapter should be devoted to this important topic. Pain is a symptom that is often missed in individuals with developmental disabilities because of its subjective nature and difficulty to assess. A more thorough discussion of this topic would be of benefit to readers and those for whom they care.
Overall, the information provided in this text is very useful and enlightening to both the novice and the more experienced professional in the field. Rubin and Crocker have successfully compiled an essential reference that will remain a "must have" for years to come. If you can only buy one book this year, this is the one to buy!
Theresa Broda, PHCNP, BScN, RN, CDDN
President, Developmental Disabilities Nurses Association
Nurse Consultant for CEMTGC in Montreal, Quebec, Canada
(The reviewer may be contacted via "Letters to the Editor")
