Choosing a Cleft Palate or Craniofacial Team
Throughout the United States there are many qualified health professionals
caring for children with cleft lip and palate as well as other craniofacial
anomalies. However, because these children frequently require a variety
of services which need to be provided in a coordinated manner over a period
of years, you may want to search for an interdisciplinary team of specialists.
The principal role of the interdisciplinary team is to provide integrated
case management for your child and to assure the quality and continuity
of care and long-term follow-up. Here are some points to consider when
selecting a team:
- The number of different specialists who participate on the team
The more specialists participating on the team, the more likely every
aspect of treatment can be considered during the team evaluation. The
specific staff will be determined by the availability of qualified personnel
and by the types of patients served by the team. When the team cannot
provide all the services required by its patients, team members are
responsible for making appropriate referrals, and for communicating
with those to whom patients are referred. This arrangement will allow
treatment plans to be coordinated and carried out in an efficient manner.
Although not all patients will need each type of specialist, the team
may include:
- an audiologist (who assesses hearing);
- a surgeon (such as a plastic surgeon, an oral/maxillofacial
surgeon, a craniofacial surgeon, or a neurosurgeon);
- a pediatric dentist or other dental specialist (e.g., a prosthodontist,
who makes prosthetic devices for the mouth);
- an orthodontist (who straightens the teeth and aligns the
jaws);
- a geneticist (who screens patients for craniofacial syndromes
and helps parents and adult patients understand the chances of having
more children with these conditions);
- a nurse (who helps with feeding problems and provides ongoing
supervision of the child's health);
- an otolaryngologist (an "ear nose and throat" doctor, or "ENT");
- a pediatrician (to monitor overall health and development);
- a psychologist, social worker, or other mental health
specialist (to support the family and assess any adjustment problems);
- a speech-language pathologist (who assesses not only speech
but also feeding problems);
- and other necessary specialists who treat specific aspects
of complex craniofacial anomalies.
When these specialists work together, and with the family, as an interdisciplinary
team, treatment goals can be individualized for each child, and parents
and health care providers can make the best choices for treatment by consulting
with each other. Because growth is a significant factor in the ultimate
outcome of treatment, the child must be assessed thoroughly and regularly
by the team until young adulthood.
The
Parameters for Evaluation and Treatment of Patients with Cleft Lip/Palate
or Other Craniofacial Anomalies document summarizes the current
guidelines for team care endorsed by the American Cleft Palate-Craniofacial
Association. By adhering to these guidelines, teams are promoting the
best possible outcome for children born with clefts or other craniofacial
birth defects.
- Qualifications of the individual members on the team
All the professionals on the team should be fully trained and appropriately
certified and licensed. This issue may impact your insurance coverage,
as well as the quality of care the team can deliver.
- Experience of the team
Each team must take responsibility for assuring that team members not
only possess appropriate and current credentials but also have requisite
experience in evaluation and treatment of patients with cleft lip/palate
and other craniofacial anomalies. You should ask how often the team
meets and approximately how many patients are seen at each meeting.
You may also want to try to determine how long this group of professionals
has been meeting as a team and also how much experience the various
individual professionals have had.
- Location of the team
The distance of the team from your home may NOT be an important consideration
in choosing a team. In general, the team will be seeing your child only
periodically throughout his/her growing years. Usually routine treatment
such as general dental care, orthodontics, speech therapy, and pediatric
care will be provided by professionals in your own community who will
be in regular contact with professionals on the team. Your travel to
a team will usually be limited to several trips a year or even once
a year.
- Affiliation of the team and its members
You may want to ask if the team is listed with the American
Cleft Palate-Craniofacial Association (ACPA) and how many of the
individual members of the team are also members of ACPA. Staying current
with recent developments in the field is one sign of a conscientious
and concerned health care professional. You may also want to determine
whether the team has any relationship to an established hospital or
to a medical school or university. Facilities for diagnostic studies
and treatment are often better with such an affiliation.
- Communication with the team
Your child may require care over a period of years, so you want to make
sure you are comfortable communicating and working with the members
of the team. Treatment recommendations should be communicated to you
in writing as well as in face-to-face discussion. The team should assist
you in locating parent-patient support groups and any other sources
for services that are either not provided by the team itself or are
better provided at the community level.
For a list of cleft palate or craniofacial teams in your state or region,
or for further information, you may contact the Cleft Palate Foundation.
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