929 S. Berkowitz (ed.), Cleft Lip and Palate,
DOI 10.1007/978-3-642-30770-6_47, © Springer-Verlag Berlin Heidelberg 2013
47
47.1 Monitoring and Improving
Outcomes Through Multicenter
Collaboration
47.1.1 Obligations
It goes without saying that professionals involved
in health care have a continuing obligation to
review the quality of care they provide. As stated
in a WHO report (2002):
Professionals entrusted with the provision of health
care have an obligation to review the success of
their practices and, where shortcomings are
revealed, to take remedial action. Such efforts
should constitute a continuous cycle, sometimes
known as a ‘clinical audit’…… (which) is divided
into evaluating the process of care (the way in
which care is delivered) and the outcomes of care
(what is achieved) …… Audit of the treatment of
clefts is a considerable challenge, because of the
lengthy follow-up required, the complexity, sub-
tlety and number of relevant outcomes and, above
all, the relatively small number of cases. Inter-
center collaboration still offers significant advan-
tages, by providing insight into the processes and
outcomes of treatment of comparable services
elsewhere, the establishment of future goals and
the exchange of clearly successful practices. …
Perhaps the greatest benefit of inter-center com-
parisons is the cooperative spirit that they foster
and a gradual diminution of rivalry.
Planned recall of patients and collection of
standardized clinical records at prescribed points
in time, not only provide the data for internal audit
of outcomes, but if done identically by a group of
centers, will allow comparisons to be undertaken.
47.1.2 Measuring Outcome
The ultimate goal of cleft care is restoration of
the patient as far as possible to a life, unhindered
by handicap or disability. However, the measure-
ment of well-being is a highly complex proposi-
tion, and there is certainly no index at present that
would allow sufficiently sensitive comparison
between alternative treatment protocols. Whether
in internal audit, intercenter comparisons, or clin-
ical trials, emphasis will typically be on “proxi-
mate” outcomes. These will mainly represent
different aspects of form and function in the parts
affected by the cleft, often reflecting the particu-
lar interest of individual provider groups. In
essence, most measures will be an indication of
the deficits that persist despite (or as a result of)
treatment, such as variations in appearance,
speech, hearing, and dentofacial development.
For outcome measures to be deemed meaning-
ful, they should reflect the needs and aspirations
of patients and their families. They should be
Eurocleft and Americleft Studies:
Experiments in Intercenter
and International Collaboration
Ross E. Long Jr., William C. Shaw,
and Gunvor Semb
R.E. Long Jr., DMD, M.S., Ph.D. (*)
Lancaster Cleft Palate Clinic,
223 N Lime Street, Lancaster, PA 17602, USA
e-mail: rlong@supernet.com
W.C. Shaw, BDS, Ph.D. • G. Semb, DDS, Ph.D.
Department of Orthodontics,
University of Manchester, School of Dentistry,
Room G.009, Coupland III Building, Coupland Street,
Manchester M13 9PL, UK
e-mail: bill.shaw@manchester.ac.uk;
gunvor.semb@manchester.ac.uk