DEVELOPING A DATA BASE FOR A SALIVA CONTROL CLINIC

Hilary Johnson M.A (ed) Spastic Society of Victoria Melbourne, 3181, Australia

ABSTRACT

This paper presents aspects data being collected on nearly 100 clients who attend the saliva control clinic in Melbourne, Australia. The clients range in age from three years to eighteen There are now a number of centres throughout the world who are interested in saliva control and it is suggested a data base be developed which can be accessed by interested researchers. Until recently information has been gathered which fails to define the discrete skills required to develop saliva control. Tools such as the SOMA may assist the collection of detailed data and to further understanding of the complex interacting factors which cause drooling. A call is made to access the current technology to develop data bases and electronically exchange information between countries.

BACKGROUND

In 1986 a saliva control clinic was set up at the Royal Children's Hospital in Melbourne, Australia (1). The idea of a clinic grew from the concerns of a number of professionals who formed a saliva interest grouping 1984 and met regularly to exchange information. It became obvious that adequate saliva control was an important factor in the acceptance of children into community as a whole and in particular integration into the main stream classroom.. There was very little of the specialised knowledge regarding intervention for this problem available in community/hospital settings.The formation of the clinic was designed to:

• bring a team of professionals together to share( and develop) their expertise
• provide a range of professionals in one venue for the parents and carers of these children to ask their questions
• provide assessment of the causes of drooling
• provide details of intervention to the parent and/or a local intervention agency In retrospect the following aims were also included,to
• provide status to an unpopular area of medicine
• build awareness on intervention to medical practitioners
• monitor clients progress
• make research into assessment and intervention more possible

It is the last aim I wish to pursue, that of developing an international database for research Australia is a large country with a small population. It is the other end of the world for many people and has borne the brunt of jokes for many years. Its' isolation has meant that Australians tend to be very interested in what people are doing in other parts of the world. This interest is infrequently reciprocated. We read with fervour the development of a saliva clinic at the High Macmillan centre in Ontario and with admiration at the Consortium of Drooling (2). In 1992 I visited these developments on a Churchill fellowship and it is because of that visit ,and our continued interest in saliva that I am here today. Australia is no longer isolated, we have telconferencing, video teleconferencing , e mail, the internet. The nineties have given us a way to communicate easily and quickly all round the world. When we are dealing with a specific problem such as drooling which is related to small numbers of people( relatively) then it is in all our best interest to combine in collaborative research to reach our goals. My goal is to better understand the critical skills /components that result in drooling, to identify strategies that can remediate the problem and to better identify appropriate interventions for different groups of clients.I hope this is yours.

APPROACH

Why collaborate ? We have a very incomplete understanding of saliva control. To understand the problem we need input from, neurologists, psychologists, therapists, otolaryngologists, dentists, engineers, statisticians, etc. We make decisions as to describe the problem with broad brushstrokes e.g.cerebral palsy or take an impressionistic approach where details are recorded close up but not recognisable until the completion of the study. One of the major drawbacks to our detailed analysis of the problem has been the lack of valid and reliable tools to describe the problem. This is beginning to change. Although the relationship between eating and drinking skills and saliva control is not fully understood, it is generally agreed that there is a relationship. What was spearheaded by Kenny(3) with the multdisciplinary feeding profile has been further developed by Reilly (4) with the Schedule for Oral Motor Assessment .Reilly (4) comments "there were few objective methods of rating oral motor skills and little if any data on important aspects of the functioning of normal children"p177. The SOMA avoids just a broad brushstroke picture but collects information on all levels, the functional area, the unit break down , and the discrete oral behaviours involved. If we are to more fully understand the problem of drooling it will be useful to describe our clients in detail so that we can group them in to more homogeneous groups in order to evaluate the efficacy of treatment In 1992 on my visits around the world I asked people about the information they were collecting on clients seeking treatment for saliva control . It seemed no-one was already developing a database and so on my return to Australia we continued to collect information we had been collecting since 1991. In three years we have information on nearly 100 clients . But is it the RIGHT information? Why are we collecting information and how will we use it? Client information is gathered in a number of ways. The major restriction in gathering information is time and clinic appointments may only last twenty minutes. Parent friendly assessments are sent out with the clinic appointment. Where there is a speech pathologist the assessment is completed by the speech pathologist. The results are checked in the clinic and transferred on to a clinic recording form. These are then transferred to a data base at another time. The following information is sought:- child's diagnosis, severity of drooling problem (5) , head posture, open mouth posture, lip competency, ability to use a straw, tongue mobility, ability to chew, awareness of client to saliva on lips/and or chin, sensory status, frequency of swallowing, swallowing pattern, cognition as related to the ability to follow commands related to swallowing/wiping, frequency of food aspiration , presence of asthma, mouth/nose breather, behaviours that might acerbate drooling, presence of epilepsy and medication and dental report. In addition the client is also rated for severity/frequency of drooling which includes number of clothes/bib changes. Computer technology proceeds at a rapid rate. We started loading the information on to Paradox, moved to Excel and are now developing a specific database on Access, a relational database. Many of the software packages are now compatible and once the data has been set up can be easily imported into other packages. Storing information on a spreadsheet such as Excel is fairly simple, however developing the structure for a relational data base is much more complex and requires clear aims for outcomes from the beginning.

RESULTS

The information below relates to data on 85 clients aged between three and eighteen years of age at the initial clinic assessment . Selected fields of data are presented to demonstrate the type of information collected . Full data is not presented on each client. The clients' diagnoses were as follows:-Intellectual disability(21); other (20); cerebral palsy (16); developmental delay(13); idiopathic (13) ;Down syndrome(2). Eighty of the clients had head control within normal limits, sixty three clients had an habitually open mouth, sixty-seven were mouth breathers and more than half of the clients had difficulty closing their lips adequately. Sixty one clients could easily use a straw. Over half of the clients could eat a wide range of foods without difficulty. Over two thirds of the clients seemed unaware of the saliva on lips and chin and were reported to swallow rarely. These results are the broad brushstrokes that encourage more specific investigation. For instance if two thirds of the clients can drink through a straw it calls into question a commonly reported therapy recommendation of straw drinking to increase the oral motor skills and and assist with the sucking back of saliva. Instead we should be asking what are the requisite skills we are observing and what should we be teaching?. How do we measure the results of intervention? The measurement of drooling has proved to be a difficult area thought about by many but tackled by few. Methods have included the use of collection units(6)) subjective reporting (5) combination of methods(7) and frequency of drooling by counting ( 8) .In 1991 I completed my Masters thesis investigating the measurement of drooling. Basically I found that bib weighing correlated highly with frequency observation rating ( much to my surprise) and as bib weighing is difficult to do in everyday settings we adopted a frequency rating. However the ratings vary considerably during the day and I was unable to find a time sample that adequately represented the full picture of the severity of the child's drooling. Thus now we still include a frequency measure along side a rating scale. I had high hopes with the consortium of drooling recommendations but a non invasive accurate method of measuring drooling still evades us. In clinic we use a scale by consensus. At home and at school we use rating scales and frequency counts. With surgical intervention we add in the number of clothing changes and % improvement by parents.

FUTURE DIRECTIONS

What I propose to ask of the special interest group of RESNA is to develop a data base( or several interlocking ones) which can describe the client, the severity of the problem, and in the longterm predict the likelihood of success of any particular treatment. I would like to see the day when we combine to produce research papers that involve clients from different states, counties and countries (Virginia, Victoria and Ontario!)

REFERENCES

1.Reddihough,D., Johnson, H.& Ferguson, E 1992 The role of saliva control clinic in the management of drooling. Journal of Pediatric Child Health,26,395-397

2. Blasco, PA , Allaire, JH, Hollahan, J Blasco, P.M., Edgerton, M.T., Bosma, J.F., Nowak, A.J., Sternfield, L, Mc Pherson, K.A., Kenny, DJ and the participants of the consortium on drooling(1991) Consensus of the Consortium on drooling Washington DC: UCPA, Inc

3. Kenny, D.J.,Koheil R.M., Greenberg, J Reid, D Milner, M Moran, R& Judd, P (1989) Development of a multidisciplinary Profile for children who are dependant feeders.Dysphagia 4,16-28

4. Reilly, S., Skuse, D., Mathisen,B & Wolke,D (1995) The objective rating of oral motor functions during feeding Dysphagia: 10,3,177-191

5. Thomas-Stonell, N. & Greenberg, J. (1988) Three Treatment Approaches and Clinical Factors in the Reduction of Drooling. Dysphagia, 3, 73-78.

6. Ray, S.A., Bundy,A.C.,Nelson,D.L. (1983) Decreasing Drooling through techniques to facilitate mouth closure, The American Journal of Occupational Therapy. 37,11,749-753

7. Camp-Bruno, J. A., Winsberg, B.G.,Green- parsons, A. R. & Abrams, J.P.(1989) Efficacy of Benztropine therapy for drooling. Developmental medicine and child neurology.31,309-319

8. Rapp D.(1980) Drool control: Long term follow-up. Develop.Med. Child Neurol. 22, 448-453

Hilary Johnson

Spastic Society of Victoria PO Box 381 St Kilda 3182, Australia ph 03 95364246 Fax 03 95253274 E-mail 100405.3537@compuserve.com