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PEDIATRICS Vol. 99 No. 4 April 1997, pp. 643-644
AMERICAN ACADEMY OF PEDIATRICS:
General Principles in the Care of Children and Adolescents With
Genetic Disorders and Other Chronic Health Conditions
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ABSTRACT |
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Abstract
Introduction
References
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The intent of this statement is to describe the breadth of issues that have special pertinence to pediatricians who care for children and families affected by genetic disorders and other chronic health conditions. The Committee on Children With Disabilities believes that because these children are leading healthier and longer lives, pediatricians are the more highly qualified to serve them, by virtue of their training and experience, and to provide them a "medical home." This statement is designed to assist pediatricians in the treatment of these patients by describing their potential roles in relationship to their patients' changing needs, as they work with various members of the health care team and as they respond to the requirements of government agencies and various third-party payers.
During the last decade we have witnessed dramatic changes in the
diagnosis and treatment of genetic disorders in children that have
fundamentally altered the way pediatricians view such conditions.
Children with genetic disorders now live longer, most into adulthood.
Using the latest scientific information, pediatricians are in the
unique position of assisting children who have genetic conditions to
reach their full potential. This goal is best achieved by facilitating
the integration of the child and family into the community while
minimizing the effects of the genetic condition on the child's overall
growth and development.
Individuals with genetic and other chronic health conditions and their
families confront a seemingly endless series of stressors in their
daily lives, many of which reflect having a chronic condition rather
than being specifically related to the underlying disorder. These
stresses may burden families emotionally, socially, and financially and
may involve them with complex and often bureaucratic health,
habilitation, education, and health insurance requirements. Pediatricians have a critical role in diagnosis, interdisciplinary planning, acute care delivery, and long-term treatment of children and
adolescents with genetic disorders and other chronic health conditions.
Families play a central role in coordinating care and making decisions
for the children. As the children mature, they may assume greater roles
in the decision-making process. This process requires that
pediatricians work with families to define and improve coping skills
and to build a partnership that educates the parents, defines the care
desired, and coordinates and assigns responsibility for the provision
of that care. The role of each care provider should be clearly stated
to the parent. Pediatricians have a key role in the provision of
family-oriented, community-based services that recognize the following
issues.
Lifelong chronic conditions are often characterized by periods of
unexpected medical crises that may be life threatening, interspersed
with periods of relative quiescence. Pediatricians should remain
accessible through all these crises, providing a "medical home" for
all such patients.1-3 They often advocate for the
family when dealing with third-party payers, such as Medicaid, the
Civilian Health and Medical Program of Uniformed Services, and other
insurance companies for managed care arrangements. Pediatricians should
also provide continuity of care to mitigate the adverse long-term
physical, developmental, educational, and psychosocial consequences of
genetic and other chronic conditions.
Ongoing care often involves the services of a multidisciplinary
team of health care professionals, which may include other medical
specialists and surgical subspecialists, nutritionists, genetic
counselors, public health and school nurses, physical therapists,
occupational therapists, speech therapists, audiologists, psychologists, and social workers.4 Services the team
should provide include enhancement of coping skills, educational
planning with the local school district, and access to care
coordination and respite services. To fulfill their important growing
role in managed care systems, pediatricians must become familiar with the skills offered by many disciplines and the role each professional plays in the care of the patient, and then they should help coordinate services for families so the needs of the patient are met in a seamless, cost-effective fashion.
Increased vigilance by the pediatrician may be necessary during
key periods of transition when new and sometimes difficult adjustments
must be made by the child and family. Examples include the start of
school, a job, or an intervention program; the changes faced during
puberty and adolescence; and living independently as an adult when
health may deteriorate and continuity of care is potentially
compromised.5 The pediatrician should focus special
attention on the family when an infant enters an early intervention
program, when a child begins school, when a child is hospitalized, as
changes of puberty and adolescence occur, and during the child's
transition into the world of higher education, employment, and
independent adult living. The process of changing physicians The pediatrician should know which community service programs are
available for all children (eg, parks and recreation and libraries) in
addition to important special public and private programs that support
children with special health care needs. Working with the family and
social services providers, the pediatrician can help ensure that the
family receives the important services and information provided by
voluntary agencies (eg, the Arc [formerly the Association for Retarded
Citizens], United Cerebral Palsy Association, Cystic Fibrosis
Foundation, Crohn's and Colitis Foundation of America, Alliance of
Genetic Support Groups, and National Organization for Rare Diseases),
publicly sponsored programs (eg, early intervention programs, special
education and related services, Supplemental Security Income, and
mandated services of the state health departments through Title V of
the Social Security Act), and patient information networks.6 To maintain current knowledge about
services available in the public and private sectors, pediatricians may
keep in contact with the local chapter or national office of the
American Academy of Pediatrics or their state Office of Services for
Children With Special Health Care Needs, or they may develop a
relationship with a developmental pediatrics or chronic illness program
at a local medical center.
Children with special health care needs, especially those with
severe mental retardation, multiple disabilities, or vision, hearing,
or neuromotor impairment, may have less access than their peers to
needed general preventive health care services because of their
family's financial or socioeconomic status, the limited availability
of child care services, limited access to transportation, and the
severity of the disability. These children and their families may have
difficulty locating health care providers who have sufficient experience with or training in the complex nature of these disabilities to provide them with necessary services. Such children and families may
therefore need even greater attention from their pediatricians to
ensure that they receive timely and appropriate developmental screening
and evaluation, immunizations, sex education, and other counseling
services.
In the last few years, impressive progress has been made in genetic
services with the introduction of formidable new tools for screening,
diagnosis, and treatment of a wide variety of inherited conditions.
Because this progress will continue, pediatricians must stay abreast of
the scientific advances while retaining their perspective on the art of
the daily practice of medicine to meet the needs of children with
genetic or other chronic health conditions and the needs of their
families.
COMMITTEE ON CHILDREN WITH DISABILITIES, LIAISON REPRESENTATIVES SECTION LIAISONS
INTRODUCTION
Top
Abstract
Introduction
References
THE MEDICAL HOME
CARE COORDINATION
TRANSITION
from
pediatrician to an adult health care providermay itself be difficult
for the patient and family.
COMMUNITY-BASED SERVICES
COMPREHENSIVE SERVICES
1996 TO
1997
Philip R. Ziring, MD, Chairperson
Dana Brazdziunas, MD
Lilliam González de Pijem, MD
Robert LaCamera, MD
John R. Poncher, MD
Richard D. Quint, MD, MPH
Virginia F. Randall, MD
Elizabeth Ruppert, MD
Adrian D. Sandler, MD
Polly Arango
Family Voices
Deborah Gaebler, MD
American Academy of Physical Medicine and
Rehabilitation
Connie Garner, RN, MSN, EdD
US Department of Education
Barry Eigen
Social Security Administration
Joseph G. Hollowell, MD
Centers for Disease Control and Prevention
Merle McPherson, MD
Maternal and Child Health Bureau
Department of Health and Human Services
Lani S. M. Wheeler, MD
Section on School Health
Chris P. Johnson, MD Section on Children With Disabilities
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FOOTNOTES |
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The recommendations in this statement do not indicate an exclusive course of treatment or serve as a standard of medical care. Variations, taking into account individual circumstances, may be appropriate.
This statement has been approved by the Council on Child and Adolescent Health.
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REFERENCES |
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Abstract
Introduction
References
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American Academy of Pediatrics, Ad Hoc Task Force on Definition of the Medical Home
The medical home.
Pediatrics.
1992;
90:774
[Abstract/Free Full Text] - Asch-Goodkin J Every child deserves a medical home. Contemp Pediatr. 1990; 6:48-63
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Sia CC
Abraham Jacobi Award Address, April 14, 1992. The medical home: pediatric practice and child advocacy in the 1990s.
Pediatrics.
1992;
90:419-423
[Abstract/Free Full Text] - Cullinane MM, Crocker AC. Service coordination. In: Levine MD, Carey WB, Crocker AC, eds. Developmental-Behavioral Pediatrics. 2nd ed. Philadelphia, PA: WB Saunders Co; 1992:737-739
- Shonkoff JP, Jarman FC, Kohlenberg TM Family transitions, crises, and adaptations. Curr Probl Pediatr. 1987; 17:503-553 [CrossRef][Medline]
- Camosy P Patient support networks: something for everyone. J Fam Pract. 1996; 42:278-286 [Medline]
Pediatrics (ISSN 0031 4005). Copyright ©1997 by the American Academy of Pediatrics
Statement of retirement:
- AAP Publications Retired and Reaffirmed
- American Academy of Pediatrics
Pediatrics 2004 114: 1126.[Extract] [Full Text] [PDF]
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