Challenges in Cleft Care
in Underdeveloped Countries
Isaac L. Wornom III
43.1 Parameters of Care
Interdisciplinary or team care is defined in the
parameters document of the American Cleft
Palate-Craniofacial Association (ACPA) as:
• The staff of the interdisciplinary team may
include individuals from the following areas
of professional practice: anesthesiology, audi-
ology, diagnostic medical imaging/radiology,
genetic counseling, genetics/dysmorphology,
neurology, neurosurgery, nursing, ophthalmol-
ogy, oral and maxillofacial surgery, orthodon-
tics, otolaryngology, pediatrics, pediatric
dentistry, physical anthropology, plastic sur-
gery, prosthodontics, psychiatry, psychology,
social work, and speech-language pathology.
• The principal role of the interdisciplinary team
is to provide integrated case management to
assure quality and continuity of patient care
and longitudinal follow-up.
(Official publication of the American Cleft
Palate-Craniofacial Association 2009)
Team care is generally accepted around the
world as the best way to care for patients with
clefts and other craniofacial anomalies.
I.L. Wornom III, M.D., FACS
Richmond Plastic Surgeons,
Clinical Associate Professor of Surgery,
Virginia Commonwealth University, 5899 Bremo Road,
Suite 205, Richmond, VA, 23226, USA
e-mail: wornom@richmondplasticsurgeons.com
S. Berkowitz (ed.), Cleft Lip and Palate,
DOI 10.1007/978-3-642-30770-6_43, © Springer-Verlag Berlin Heidelberg 2013
43
43.2 Obstacles to Team Care
in the Developing World
Ninety percent of the world’s population has
access to only 10 % of world health resources.
This leads to many barriers being present to pro-
viding interdisciplinary team care to children
with clefts in developing countries. One of these
confronted by groups traveling to the developing
world to deliver care is overwhelming numbers
of patients with clefts needing surgery. In addi-
tion, when care is provided by a foreign group
who is not part of the native population, there is
usually limited time available to see follow-up
patients. Regular follow-up speech therapy and
orthodontic care is often unavailable and difficult
to provide in a single 1- or 2-week visit. Travel
for patients for follow-up on return visits may be
difficult, and they may not show up.
43.3 Team Care in the Developing
World: Making It Happen
How can we begin to provide patients who are
born with clefts in developing countries the same
interdisciplinary team care we give to our patients
with clefts in the developed world? There are
basically two ways to develop team care in places
around the world where it does not exist. One is
to travel with an interdisciplinary team to a devel-
oping country to provide care for patients with
clefts and go to the same place over a long period
of time. The trip should have a strong educational
879
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component as part of its mission and be commit-
ted to working with local providers whenever
possible to deliver care. Dr. Hussein and his coau-
thors give a good description of how they have
accomplished that in Palestine in this chapter.
The second way is to bring providers from devel-
oping countries to the developed world to learn
interdisciplinary team care for patients with clefts
and help them take that care back to their home.
An example of this is the visiting scholar pro-
gram of the American Cleft Palate-Craniofacial
Association.
43.3.1 Mission Trips
Anyone contemplating a trip to foreign country
to provide cleft care should have a strong umbrella
organization for mission planning and coordina-
tion. There are many excellent groups around the
developed world who serve this role. The group
should have good government and medical con-
nections within the country which is the focus of
the trip. The umbrella organization should check
the credentials of the team; organize logistics of
transportation, housing, and food; arrange for
interpreters if needed; publicize the team in the
country prior to arrival; and keep longitudinal
patient medical records. It should also help iden-
tify local health-care providers who can work
with the visiting team to learn interdisciplinary
team care over an extended period of time so
knowledge of team care can grow in the host
country.
The most important thing for a successful
introduction of team care into an area by a mis-
sion trip group is a commitment to return to the
same place at least yearly for a long period of
time. Dr. Hussein and his coauthors clearly model
that in what they have done in Palestine. This
commitment allows follow-up of patients over a
long period of time, keeping of longitudinal
records, accomplishing sequenced reconstruc-
tions, introduction of speech therapy and orth-
odontic care as a component of treatment, and
evaluation of outcomes. In addition, whenever
possible, education of local providers can be car-
ried out year after year until they can provide the
I.L. Wornom III
care on their own without the team having to
come. This should be the end goal.
Surgical safety is extremely important. World
Health Organization surgical checklist guidelines
should be followed in the operating room (Official
Publication of the World Health Organization
2011). Guidelines for the Care of Children in the
Less Developed World which was published in
2011 gives detailed recommendations regarding
anesthetic and surgical equipment and procedures
to follow for maximizing patient safety on mis-
sion trips (Schneider et al. 2011). Participants on
mission trips should practice within their spe-
cialty. The developed world is not the place to do
something you do not normally do in your home
country. All trip personnel should be appropri-
ately licensed and board eligible or certified in
their specialty. Virtually all umbrella organiza-
tions and ACPA and PSEF position papers sup-
port these ideas.
Patil et al. from Nagpur, Maharashtra, India,
published “Changing patterns in demography of
cleft lip-cleft palate deformities in a developing
country: the smile train effect-what lies ahead?”
in Plastic and Reconstructive Surgery in January
of 2011. This was a retrospective study of a three-
decade experience combined with a survey on
awareness of cleft deformities of patients treated
by the authors compared with patients treated ini-
tially by camp surgeons. In this study, there was a
marked decrease in numbers of patients with cleft
lip and cleft lip-cleft palate treated at their estab-
lished unit during this time period, but the num-
ber of patients with isolated cleft palate stayed
the same. The age of patients reporting for palate
repair was 16 months in their patients and
41 months in patients treated initially in a camp
setting. The patients operated initially in camp
settings did not have the same awareness of the
need to follow a time line treatment protocol or
awareness of their deformity and need for fol-
low-up as those operated on initially by the
authors. They speculate that camp surgeons oper-
ate preferentially on cleft lip and not on cleft pal-
ate. They conclude that the Smile Train project
has helped cleft care in India, but counseling and
improved team care should be the focus of the
future.
43 Challenges in Cleft Care in Underdeveloped Countries
Perhaps, the best example of how returning to
the same place for a long period of time can lead
to the development of interdisciplinary team care
is the work done in Sri Lanka by Michael Mars
and his group. They recently published a book on
their experience returning to the same place for
25 years. Their work demonstrates how consis-
tently returning to the same place can lead to
superb outcome evaluation and education of local
providers to provide interdisciplinary team care.
Management of Cleft Lip and Palate in the
Developing World by Mars, Sell, and Habal should
be read by anyone contemplating such endeavors.
43.3.2 Bringing Providers
to the Developed World
The ACPA Visiting Scholar Program is an excel-
lent example of how an individual from a devel-
oping country with the knowledge and potential
to bring interdisciplinary team care for cleft and
craniofacial patients to that country can be nur-
tured and encouraged. Each year, one individual
spends 6 weeks in North America visiting cleft
and craniofacial teams and attends the ACPA
annual meeting. The individual then returns to
their home country and uses the knowledge they
have gained to establish or improve interdisci-
plinary team care. This program has been in place
now for 15 years, and numerous examples exist
of how these people have brought team care back
to their home countries.
Dr. Peter Donkor, an oral and maxillofacial
surgeon from Ghana who was the ACPA visiting
scholar in 2005, demonstrates the effect this type
of program can have. Over the past 6 years, he
has established a multidisciplinary team at his
institution in Kumasi, Ghana. He also helped
found the Pan African Association of Cleft Lip
and Palate of which he is now president. Finally,
he began a collaboration with Dr. Michael
Cunningham of Seattle, Washington, who was
his visiting scholar sponsor promoting team care
881
for cleft lip and palate throughout Africa by
bringing teams from throughout Africa to Kumasi
and Seattle for training.
43.4 Summary
There are two ways to foster team care for patients
with cleft lip and palate in the developing world.
One is to travel with an interdisciplinary team to a
developing country to provide care for patients
with clefts and go to the same place over a long
period of time with a focus on educating local pro-
viders and empowering them. The second is to
bring providers from developing countries to the
developed world to learn interdisciplinary team
care for patients with clefts and help them take that
care back to their home. Both have roles to play in
the future. Those who provide this type of care
need to focus on both going forward if team care is
going to become a part of cleft care in the develop-
ing world. This should be the goal going forward.
References
Mars M, Sell D, Habal A (2008) Management of cleft lip
and palate in the developing world. Wiley, West
Sussex
Official Publication of the American cleft palate-cranio-
facial association (2009) Parameters for evaluation
and treatment of patients with cleft lip/cleft palate or
other craniofacial anomalies. http://www.acpa.cpf.
org/teamcare/Parameters%20Rev.2009/pdf. Accessed
28 Nov 2011
Official Publication of the World Health organization
(2011) Surgical safety checklist (first edition). http://
www.whol.int/patientsafety/safesurgery/tools_
resources/SSSL_checklist_finalJun08.pdf. Accessed
06 Nov 2011
Patil SB, Kale SM, Khare N et al (2011) Changing pat-
terns in demography of cleft lip- cleft palate deformi-
ties in a developing country: the smile train effect-what
lies ahead. Plast Reconstr Surg 127:327–332
Schneider WJ, Politis GD, Gosain AK et al (2011)
Volunteers in plastic surgery guidelines for providing
surgical care for children in the less developed world.
Plast Reconstr Surg 127:2477–2486