THE C@ROLIN@ SOFTWARE

A System for Monitoring Skills Development of Children with Down Syndrome

Salvatore Cuomo, Aniello Murano and Francesco Piccialli

Faculty of Science MNF, University of Naples Federico II, Naples, Italy

Keywords:

Design and development methodologies for Healthcare IT, Assessment, Databases and datawarehousing,

Datamining, Support for clinical decision-making, Numerical Extrapolation.

Abstract:

The study of medical protocols for monitoring and analyzing the cognitive development of children with

disabilities is a fundamental research area. In this context, a well established curriculum-based assessment is

the Carolina Curriculum for Infants and Toddlers with Special Needs(CCITSN). This is a suitable curriculum

for early intervention programs, where sequenced items data collection and analysis allow for monitoring,

incremental program change, and recognition of areas of relative strength and weakness in children with mild,

moderate, or severe disabilities.

This paper describes the design and the development of an information system based on a client-server soft-

ware application, named C@rolin@, which carries out all CCITSN abilities and more, for the monitoring and

the analysis of data coming from a medical protocol for children with the Down syndrome. In particular, by

means of user-friendly graphic interfaces, the C@rolin@ software helps users to add, modify, recover, and

analyze data, to watch singular and aggregate data via customized reports, as well as to interpolate data among

children to determine or prevent speciﬁc behaviors.

1 INTRODUCTION

The study of medical protocols for monitoring and an-

alyzing the cognitive development of children with

disabilities is a very spread out research area (c.f.,

(R. S. Chapman, 2000)). Many studies in this ﬁeld

are based on means-end behavior, which involves a

painful execution of a sequence of steps to achieve a

goal and occurs in situations where an obstacle pre-

venting achievement of the goal must be initially re-

moved (Piaget, 1953; Woodward, 1971). Means-end

is considered a fundamental cognitive milestone due

to its strong correlation to the ﬁeld of verbal and non-

verbal intentional communication (E. Bates, 1979a;

E. Bates, 1979b) and its relationship to understanding

the intent of other actions (S. Bruce, 2009). While the

majority of means-end research on children without

disabilities focuses directly on the developmental se-

quence and the age at which means-end behaviors are

achieved, most of the research on children with se-

vere disabilities emphasizes how the development of

means-end is connected to intentional communication

and language development. In this contexts, it is well

stated the importance of creating accessible opportu-

nities for children with disabilities to observe others

solving means-end problems (that is, problems in

which one must act on an intermediary to attain a goal

object).

Means-end behaviors can be assessed using for-

mal assessment tools, informal commercial tools, or

through structured informal assessment. In the case

of young children, the assessment is often done in

the context of play, but adults can create opportu-

nities for children of any age to display means-end

skills as well. In this context, the Carolina Cur-

riculum for Infants and Toddlers with Special Needs

(CCITSN) (M. Nancy, 2004) is a well established

curriculum-based assessment that provides interven-

tion strategies appropriate for young children with

disabilities. In particular, it allows for early inter-

vention programs, where sequenced items data col-

lection and analysis allow for monitoring, incremen-

tal program change, and recognition of areas of rel-

ative strength and weakness in an individual infant

or child with mild, moderate, or severe disabilities.

The curriculum is based on normal sequences of de-

velopments but does not assume even development

across domains. The curriculum recognizes the im-

portance of teaching adaptive skills that temporar-

ily or permanently replace normal skills as neces-

180

Cuomo S., Murano A. and Piccialli F..

THE C@ROLIN@ SOFTWARE - A System for Monitoring Skills Development of Children with Down Syndrome.

DOI: 10.5220/0003135401800185

In Proceedings of the International Conference on Health Informatics (HEALTHINF-2011), pages 180-185

ISBN: 978-989-8425-34-8

 2011 SCITEPRESS (Science and Technology Publications, Lda.)

sary. It provides functional activities, suggestions

and suitable adaptations to address sensory/motor is-

sues and stresses the importance of family involve-

ment throughout the assessment-intervention process.

Practically, CCITSN allows to collect continuously

data on the children’s progresses along the curricu-

lum. The quantitative information are also compared

with qualitative data collected by interviewing both

children and their relatives. The interview analysis

is used to explore children’s perceptions and experi-

ences through the identiﬁcation of lexical ﬁelds, key-

words and phrases. The interviews produce data to

gauge the effectiveness of the interventions, programs

and transition plans for each of the different settings.

All the acquired data will be used to check whether

a child develops the right skills in accordance to his

age. If this is not the case, the data will then help to

determine the right program to follow to recover such

skills. Finally, we report that recently in Italy the Car-

olina Curriculum has been adopted as a basic service

within several local Regional Service Systems (ASL).

Although the advantages of the Carolina Curricu-

lum are intrinsically clear and well established (see

(E. Del Giudice, 2006) for a useful recent applica-

tion), its practical application suffers from the huge

quantity of information it has to collect and handle,

which is done continuously along the speciﬁc child

program. Indeed, we recall that the curriculum is

divided into 24 logical teaching sequences covering

ﬁve development domains (i.e., cognition, communi-

cation, social adaptation, ﬁne motor, and gross mo-

tor). Each curricular item is then divided in six ar-

eas (i.e., title, objective, materials needed, teaching

procedures, routine integration strategies, and senso-

rimotor adaptations). Each of such areas is then di-

vided in several sequences. Totally, the curriculum

allows to monitor 531 abilities and the goal here is to

ensure that each child acquires all these abilities by

the end of the monitoring process. This huge amount

of data (and thus of work) makes quite impossible to

manage the Caroline Curriculum by hands and gen-

eral commercial software tools are less appropriate to

collect and properly elaborate all these data.

The aim of this work is to design and de-

velop a full web application software system, named

C@rolin@, based on the Carolina Curriculum frame-

work. This software allows, from one side, to ef-

ﬁciently collect, represent, and evaluate the rela-

tive data along the curriculum and, from the other

side, to support educators, doctors, parents, volun-

teers, therapists, and the children themselves in the

assessment-intervention process of the children in-

volved, all as required by the Carolina Curriculum.

Hence, C@rolin@ fully takes care of all 531 items on

which the evaluation table of the Carolina Curricu-

lum is based. Moreover, C@rolin@ allows all peo-

ple involved in the children development skills pro-

cess to have a concurrent and real-time access to all

data, with respect to their own access privileges, and

to add, modify, elaborate, and organize them. Teach-

ers and doctors can check at any time the performance

of all children activities and use this information to

better plan the future activities. Also, they can make

data interpolation among children (also using history

data) to better organize the future programs as well

as prevent problems/failures, of any sort, in the fu-

ture. As one may expect, C@rolin@ beneﬁts of all

positive aspects of a client-server software. Among

the others, we report that it can avoid data duplica-

tion, ensures data coherence, allows using a common

tool for monitoring results across different develop-

ment areas, allows to easily extract aggregate data to

be used in external systems, etc.

Practically, C@rolin@ is realized by means of the

following implemented modules:

• Evaluation Tables;

• Identiﬁcation of emerging skills, the consolidated

ones, and those not yet acquired;

• Data analysis: score, development age, develop-

ment quotient;

• Overall Program Planning;

• Development Progress Chart (DPC).

• Working Plan: daily, weekly, and monthly tasks

description;

2 THE SOFTWARE

ARCHITECTURE

The C@rolin@ software has been implemented over

a three–tier infrastructure, that is, a client–server ar-

chitecture in which the presentation, the application

processing, and the data management are logically

separate processes. We have chosen to use a multi-

tier architecture as it allows to develop a ﬂexible

and reusable application. Indeed, by breaking up the

C@rolin@ software into tiers, future developmentsof

the software may involve only a speciﬁc layer, rather

than to rewrite the entire application over.

Speciﬁcally, the C@rolin@ software has a client

tier, an application tier, and a data tier, working as

follows:

• Client Tier. This is the topmost level of the ap-

plication. It is composed of the front-end pages of

users (doctors, teachers, families, ecc) interfaces

THE C@ROLIN@ SOFTWARE - A System for Monitoring Skills Development of Children with Down Syndrome

181

and displays information related to these actors.

These interfaces are described in more details in

the following;

• Application Tier. This tier is composed of the

PHP (version 5) modules implementing the busi-

ness logic of the application. Most of these mod-

ules are responsible for processing the user input

from the upper tier and for loading and storing

data in the lower tier. Note that, at this level, it

is hidden the way the storage of data is imple-

mented;

• Data Tier. This tier consists of a relational

database server, deployed by using MySql as a

database management system, where all informa-

tion are stored. In particular, all relationships be-

tween the different domains with sequences and

items on which the Carolina Curriculum is base

have been implemented. This tier keeps data neu-

tral and independent from the other two tiers.

The application is fully accessible with a web

browser. The navigation is facilitated across the sim-

ple interfaces based on menus and navigation bars.

No browser plug-in installations are needed, except

for the Java runtime to run applets. It is worth not-

ing that the system has been tested on recent versions

of the most common browsers (i.e., Internet Explorer,

Mozilla Firefox and Google Chrome).

The database has the aim of recording for each

child all the evaluation data, their elaboration, and in

particular the data scores. Also, the database offers

a useful centralization of data, in such a way that ev-

ery subject involved in the Carolina Curriculum can

easily access to the children information database, ac-

cording to their access privilege, in order to add, mod-

ify or simply watch children data and programs.

In order to get a further logical separation at the

presentation level (i.e, at Client Tier level) we also use

in C@rolin@ a Model View Control (MVC) architec-

ture. Note that while the three-tier infrastructure is

mainly physical, the MVC architecture pattern estab-

lishes a division of responsibilities between compo-

nents at a use case level, without mentioning physical

boundaries (in deployment terms).

The overall software architecture allows to access

easily to clear tables and charts to fully understand

the development level reached by children, as well

as the program they have been following since their

enrollment under the Carolina Curriculum. The soft-

ware is built in such a way it can offer data analysis

as well as data comparison to determine or prevent fu-

ture events. Finally, the software is build in order to

easily support the export of aggregate data to be used

in external systems.

3 DATA ANALYSIS

As it is well known by medical expertises, the appro-

priate use of the Carolina Currriculum is based on

the following main steps: (i) Determine initial chil-

dren status, (ii) Plan the right program and implement

it, (iii) possibily, change the program according to

the ongoing collection of data. These steps are im-

plemented by using a simpliﬁed Elettoronic Patient

Record (ERP), as we have implemented (see Figure

1). The ERP is composed of eight panels, which al-

lows to make, in a sequential way, the following main

tasks required by the Carolina Curriculum: prelimi-

nary evaluation, data store, data analisys, program

plan.

Figure 1: The ERP along with its eight panels.

The user-friendly graphic interface allows the op-

erator to easily open a new curriculumor a child (eval-

uation table), record his data, as well as calculate and

show all relative scores. Then, by using clear data

reports built apon this information, the operator is as-

sisted to set up the most appropriate program for the

child, as well as to monitor his developments along

the time. Also, the reports help the operator to decide

wheter it is better to modify the planned program or

stay with it (see Figure 3). This guarantees that every

child will have his own program, corresponding to his

speciﬁc needs.

In Figure 3, we show the

Data Report Panel

that reports, by means of tables and development

progress charts, the following information: develop-

ment age, development rate, partial and global perfor-

mance indexes of the applied program. All these data

are calculated (and thus shown) for each domain area

and/or sequence. Also, it is possible to show current

data variations with previous evaluations. Using these

data, the operator has always in real-time the com-

plete and detailed picture of the children skills devel-

opment.

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182

Figure 2: The new child curriculum panel.

It is worth noting that such a panel organization

is hard to reproduce by using classical software tools

such as spreadsheets, because of the huge amount of

data to be handled and the continuous adaptations of

the program to the speciﬁc needs of the children un-

rolled under the curriculum.

Figure 3: The Data Report Panel.

The modular functionality of the C@rolin@ soft-

ware (i.e., its break down in the above described pan-

els) reﬂects the modular architecture of the software.

The latter is very useful in the case one has to mod-

ify a module and even more in the case a new module

for a speciﬁc task has to added in the future. In this

case, indeed, it is not required to modify the entire

software, but only the part under interest.

Observe that also the Carolina Curriculum has

been efﬁciently thought in a modular way. This is just

because, as any medical protocol, it is characterized

by fast and deep changes along the time. The Carolina

Curriculum is now days at its third edition and, thanks

to its modularity, every new release has been obtained

by simply adding new tasks, without changing the ba-

sic structure of the curriculum. In the same way, one

can add a new domain area in the C@rolin@ soft-

ware by simply updating the database. Technically, it

is not required to touch the graphic interface as it is

a web based application. Indeed, it is automatically

generated by means of the structure of the Curricu-

lum stored in the database). So, the new domain area

is added to the graphic interface for free.

3.1 A Guided Planning Program

The C@rolin@ software is developed in order to set

up a speciﬁc program for each patient. This is done

by collecting and evaluating data along the time. At

each evaluation stage, the software select a list of 31

skills not acquired yet (corresponding to item data

scored with 0) and 31 emerging skills (corresponding

to item data scored with 0.5). The operator then se-

lects at most six speciﬁc skills among them to plan

the program. The planning consists of associating

the selected items speciﬁc daily tasks (made in rou-

tine), by means of ad-hoc strategies and speciﬁc tools.

The main children daily routines are: Eating, Sleep-

ing, Dressing, Playing with adults, Playing alone,

and Reading. The program results are stored in the

database along with the score achieved and the main

difﬁculties registered. By using overall information

stored in the database such as development age, de-

velopment rate, family conditions, etc. the software

suggests the right planning program for improving the

children skills.

Suppose that we want to compute some values in

the

Data Report Panel

, such as development age,

development rate, partial performance index of the

applied program, for each domain and sequence. This

is performed by applying speciﬁc formulas (deﬁned

by the Carolina Curriculum), reported in the follow-

ing, each one developed in a speciﬁc module of our

software. For the development rate, we ﬁrst have to

calculate the weight (PI) of the Item, as follows

PI =

PTA

(1)

where PTA is the typical period of a skill reached and

NI is the number of items.

The development age is:

ES = PG∗ PI (2)

where PG is the row score.

The development rate is:

QS =

× 100 (3)

where EC is the chronological age.

THE C@ROLIN@ SOFTWARE - A System for Monitoring Skills Development of Children with Down Syndrome

183

The partial performance index of the applied pro-

gram is equal to the performance between two sub-

sequent evaluations. Formally, it is expressed by the

following formula

IE =

ES(t

) − ES(t

)

(4)

where T is therapy time.

The overall information obtained by the Carolina

Curriculum therapy are elaborated by different soft-

ware modules and for each patient the results of

ad-hoc planning program is reported in a Develop

Progress Diagram (DPD) as showed in ﬁgure 4.

Figure 4: A Develop Progress Diagram (DPD). Blank cells

correspond to score 0, red cells correspond to score 1, the

remaining ones to score 0.5.

By means of the DPD, the operator at a glance can

immediately observe the children skills status.

4 PRACTICAL EXPERIENCES

In this section, we underline few interesting potential-

ities of the implemented software in the analysis of

data. The presence of a central database permits the

comparison of acquired skills from different patients

and the efﬁcient monitoring of the program on each

children. The difference with a classical spreadsheet

is also in the possibility to get out information through

the opportune queries to the database and to com-

bine information through formulas seen in the previ-

ous section.

4.1 Analysis of Development Trajectory

Assume that we want to extract some medical infor-

mation from a number of patients enrolled under the

Carolina Curriculum. This can be done by means of

ad-hoc queries, which are performed by an authorized

operator. In the following, we report fews examples

of such queries and the consequent analysis on real

data.

SELECT AVG (ES) FROM CURRICULUM

WHERE AGE = 10 AND T_RILEV = 0;

SELECT AVG (ES) FROM CURRICULUM

WHERE AGE = 13 AND T_RILEV = 1;

SELECT AVG (ES) FROM CURRICULUM

WHERE AGE = 16 AND T_RILEV = 2;

SELECT AVG (ES) FROM CURRICULUM

WHERE AGE = 19 AND T_RILEV = 3;

where the ﬁeld T RILEV represents the evaluation

time. In words the above queries allow to select the

following children:

• those ones having started the program at the age

of 10 months;

• those ones having started the program at the age

of 7 months;

• those ones having started the program at the age

of 4 months;

at speciﬁc evaluation times T

, T

. In Figure 5,

there is the comparison between the development tra-

jectory of a child without disabilities (ideal trajectory)

and the measured one.

Figure 5: A comparison between the ideal development tra-

jectory and the measured one. The ordinate axis gives the

development age.

Then, by means of the following query:

SELECT AVG (ES) FROM CURRICULUM

WHERE AGE = 10 AND T_RILEV = 1;

SELECT AVG (ES) FROM CURRICULUM

WHERE AGE = 13 AND T_RILEV = 2;

SELECT AVG (ES) FROM CURRICULUM

WHERE AGE = 16 AND T_RILEV = 3;

SELECT AVG (ES) FROM CURRICULUM

WHERE AGE = 19 AND T_RILEV = 4;

we select both children having the age of 10 months

at time T

or T

. Similarly, we select by means of a

query both children having the age of 10 months at

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184

time T

or T

As it is shown in Figure 6, the develop-

ment trajectory of the children that have been unrolled

under the curriculum for more time, it is much more

close to that one related to those children that have

been unrolled under the curriculum from less time.

This at any ﬁxed age.

Figure 6: Comparison between development trajectory of

children unrolled under the curriculum for different time.

The ordinate axis give the development age.

4.2 Analysis of the Development Rate

On a real sampling of 12 patients enrolled under the

Carolina Curriculum, we select information about the

developmentrate automatically calculated by the soft-

ware.

Table 1: Development Rate.

10 months 13 months 16 months 19 months

25.2 34.3 44.5 55,7

45.1 49.3 55.4 62.3

54.3 58.8 63.6 67.1

The values are normalized to 100. Observe that the

more the children are enrolled under the curriculum

the more the development rate get closer to the ideal

development rate.

5 CONCLUSIONS

In this work, we have reported a study for the design

and the development of an information system soft-

ware based on client-server application for the im-

plementation of the Carolina Curriculum for children

with special needs. This Curriculum concerns the

continuous collection of severaldishomogeneous data

and its analysis to set-up an appropriate program for

the skill development of children with special needs.

In particular these data are the bottle-neck in the prac-

tical application of the Carolina Curriculum due to the

concurrent management of evaluation tables, scores,

development indicators, etc. The software we have

implemented solves this problem by means of a user-

friendly web application in which the operator by

means of a modular structure, can add, modify, delete,

recover patient data as well as to show aggregate data

via charts. These operations are all required by the

Carolina Curriculum. Moreover, the software offers a

comparison among data that is unthinkable using Car-

olina Curriculum by hands. In particular, by means of

a clinical application, it has been possible to show in-

teresting properties over the patients treatment: “the

more the children have been unrolled under the cur-

riculum the more their behavior is closed to a stan-

dard one”. This property is important not only from

its one, but also to set-up the ability of our software to

be an useful tool for future medical research.

ACKNOWLEDGEMENTS

We thank Professor E. Del Giudice of Department of

Pediatrics for the data he gave us for testing our soft-

ware. We also thank Dott. A. Olivo for useful dis-

cussions on the Carolina Curriculum, on which she is

an expert, and for her practical advices on developing

the software.

REFERENCES

E. Bates, L. Benigni, I. B. L. C. V. V. (1979a). The emer-

gence of symbols: cognition and communication in in-

fancy. New York: Academic Press.

E. Bates, L. Benigni, I. B. L. C. V. V. (1979b). Perceptual

aspects of tool use in infancy. In Infant Behavior and

Development, 34, pages 127 – 140.

E. Del Giudice, L. Titomanlio, G. B. A. B. A. R. G. M. R.

P. O. D. M. E. T. G. A. (2006). Early intervention

for children with down syndrome in southern italy:

The role of parent-implemented developmental train-

ing. Infants and Young Children, 19:1:50–58.

M. Nancy, Johnson-Martin, S. M. A. B. J. H. (2004). The

Carolina Curriculum for Infants and Toddlers With

Special Needs. Paul H. Brookes Pub Co., 3rd edition.

Piaget, J. (1953). The origin of intelligence in the child.

London: Routledge and Kegan Paul.

R. S. Chapman, L. J. H. (2000). Behavioral phenotype of

individuals with down syndrome. Mental Retard. De-

velopm. Disabil. Res., Rev. 6:84–95.

S. Bruce, C. Campbell, M. S. (2009). Supporting chil-

dren with severe disabilities to achieve means-end.

TEACHING Exceptional Children Plus, 6:1:1–15.

Woodward, W. M. (1971). The development of behaviour.

Harmondsworth, England: Penguin.

THE C@ROLIN@ SOFTWARE - A System for Monitoring Skills Development of Children with Down Syndrome

185