Is anxiety ‘the main brake’ to the developmental expression of people with trisomy 21?
Ricerca e scienza
di Maximilien Girardin
Abstract
A clinical pre study was initiated, on five adult, profoundly poly-handicapped patients, which demonstrated no evolution, since five years in a row. The objective was to investigate the eventual quantifiable effects of an Evolutionary Osteopathic approach in treatment, of their psychomotor, social and emotional evolution. The outcome suggests that anxiety is a major brake for the further development of patients with a trisomy 21 syndrome. The outcome also implies that the Evolutionary Osteopathic[1], approach released this developmental brake.
Introduction
As Osteopathy is more often chosen by the public as health maintenance system[2],[3] as well as for chronic and for acute troubles and general health maintenance, Osteopaths are frequently confronted with cases which were not so customarily found in our practices 30 years ago. Several profoundly poly-handicapped patients, as well adults as children, were treated with the approach of Evolutionary Osteopathy.[4],[5] Consequently they demonstrated evolution, and in a few cases a real Jumpstart, in their developmental status according to the daily activity observations of the parents and tutors. As there was not much to be found in the literature about neither the subject, nor any objective information from colleagues, these authors initiated a clinical pre-study to see if these developmental improvements after treatment with this approach were objectively repeatable and quantifiable. A day care institution[6] for profoundly poly-handicapped individuals was interested in collaboration for this study. After getting an accreditation research number of the ethical commission from the St. Maria Clinic of Halle, the research was set up.
The Direction Board of the Institution chose five profoundly poly-handicapped patients that did not demonstrate any further positive evolution for at least five years in a row. These patients were treated with the Evolutionary Osteopathy approach every sixth week during one year, in addition to their normal daily treatments, medication and institutions’ general care, which was continuing normally. This resulted in nine Evolutionary Osteopathy treatments in total, during a year between the two Institution assessments, before and after. The professionals assessors do the assessments all year through, and they did not now that these patients had undergone something else than the usual, it happens in another building and they never saw us; thus our test subjects were hidden in the sea of every day assessed patients. It is very important for the researchers that the test batteries used, are the fittest to the patients specific individual abilities, and measure as largely as possible their individual psycho-motor, emotional and social capacities, as the researchers could not prognoses in which domain a result might show. As the Evolutionary Osteopathic approach focuses on the health potential still present and not on disease or hindrances in particular.
Method
To prevent experimental bias in this preliminary study, the five patients were selected by the Institution Direction board, without any of the testing or caring personal knowing of which patients were included in the study. The researchers saw the patients the first time during the first treatment and never got to see the patients files nor their medical diagnosis until the year research was over.
Inclusions criteria:
- Patients must be profoundly poly-handicapped “polyhandicapés profonds” (profound mental and physical disabilities )
- Patients must be adults (at least 18 years of age, in Belgium)
- Patients must demonstrate no positive evolution in the annual testing-scores since at least five years in row.
- Patients must, like all others in the Institution, be broadly tested and assessed on a yearly basis with test batteries which are the fittest to their specific individual abilities, and which measure as largely as possible their individual psycho-motor, emotional and social capacities.
Exclusion criteria:
- Patients that need regular change in medication or therapies because of known labile health status.
- Patients or tutors that did not signed the informed consent.
- Patients that did have some positive evolution in any of their test scores over the last five years
- Patients under 18 years of age.
The tests & test batteries utilized by the institutions personal are standardized, internationally used and intercultural. Especially important as the patients could be from very different cultural backgrounds.
The utilized tests & batteries were:
- Psycho Educational Profile Revised, concept from North Caroline by TEACCH[7]
- Evaluation scale for profound poly-handicapped children of FROHLICH and HAUPT[8]
- Assessment of Motor and Process Skills[9]
- Psychic and behavioral disturbance assessment for mentally retarded by DOSEN[10]
- Motor test for mentally retarded by COSTENOBLE[11]
The patients received their normal yearly medical check and test assessment by the specialized personal of the institution, following this, the first treatment started. After one year they were retested along with the rest of the patients in the Institution.
With the exception of the additional nine Evolutionary Osteopathy treatments, their general health care, medication or therapies did not change over the course of the last year.
The treatment interventions with the Evolutionary Osteopathic approach included the following approaches:
- Mental medicine, as described by A.T. Still[12], W.G. Sutherland[13], Ch. Handy[14] and S.M. Davidson[15] and M.Girardin[16].
- Improperly called “cranial techniques” with the Long Tide as described by W.G. Sutherland and R.E. Becker[17] applied on the whole of the body such as visceral, fascial and fluidic systems for instance.
- The practitioner used these methods within the concept of Evolutionary Osteopathy, knowing that they are empirical and have no scientific validation whatsoever to date. The choice was heuristically and empirically based on the best results, observed in the private practice on similarly hindered children and adult patients. The reason why adults were chosen was mainly to reduce the possibility of biased outcome by natural or spontaneous improvement, which is more susceptible in children.
The time period of each treatment varied according to the patients’ body responses. Treatments durations were recorded as follows for the individual treatment sessions:
Patients Pat 1 Pat 2 Pat 3 Pat 4 Pat 5
Treatment 1 30 min. 55 min. 35 min. 60 min. 45 min.
Treatment 2 25 min. 30 min. 35 min. 35 min. 40 min.
Treatment 3 40 min. 40 min. 15 min. 25 min. 40 min.
Treatment 4 25 min. 15 min. 25 min. 25 min. 35 min.
Treatment 5 45 min. 20 min. 25 min. 35 min. 35 min.
Treatment 6 30 min. 25 min. 20 min. 30 min. 45 min.
Treatment 7 40 min. 55 min. 35 min. 45 min. 45 min.
Treatment 8 35 min. 25 min. 20 min. 30 min. 35 min.
Treatment 9 25 min. 15 min. 30 min. 30 min. 15 min.
Subjects
The subjects were selected by the day care center Direction board on basis of the criteria of ‘no improvement in the last five years’. Follows diagnosed syndrome, biological age and mental age scores of the included subjects, which the researchers only got to see after the research was done and over.
• Patient 1: Down’s syndrome
– Biologic age: 41 years
– Developmental age: 3 years 5 months
• Patient 2: Down’s syndrome
– Biologic age: 35 years
– Developmental age: 2 years 10 months
• Patient 3: Down’s syndrome
– Biologic age: 29 years
– Developmental age: 2 years
• Patient 4: Martin-Bell’s syndrome
– Biologic age: 30 years
– Developmental age: 1 year 6 months
• Patient 5: Idiopathic spastic quadriplegia
– Biologic age: 24 years
– Developmental age: 1 year 5 months
The developmental age is categorized as follows:
- adaptation phase: 0-6 months
- socialization phase: 6-18 months
- first individualization phase: 18-36 months
- first identification phase: 3-7 years
Results
Following the analysis of all of the applied batteries:
Patient 1 (Applied tests: Teacch, MTZ, AMPS, Dösen)
Improved his developmental score: by 5 months
Scored a developmental age of 3 years 5 months before and 3 years 10 months after treatment
Patient 2 (Applied tests: Teacch, MTZ, AMPS, Dösen)
Improved his developmental score: by 7 months
Scored a developmental age of 2 years 10 months before and 3 years 5 months after treatment
Patient 3 (Applied tests: Teacch, MTZ, AMPS, Dösen)
Improved his developmental score: by 17 months
Scored a developmental age of 2 years before and 3 years 5 months after treatment
Patient 4 (Applied tests: Teacch, MTZ, Dösen)
Improved his developmental score: by 2 months
Scored a developmental age of 1 years 6 months before and 1 years 8 months after treatment
Patient 5 (Applied test: Föhlich&Haupt)
The patient is more alert, increased the reaction capacity, and demonstrated an obvious evolution of verbal and concentration capacity.
On a motor level clear amelioration even if certain domains did not progress due to the muscular spastic retractions. The patient demonstrates behaviour ranging from level 1 to level 4. In comparison with the tests before treatment she demonstrates a larger range of behaviours on different levels, most spectacular on level 4.
Graphics
The vertical axis on the graphics represents the number of items to complete the test within the particular test battery, the colored bars represents the aptitude of the patients to accomplish the required item. (For instance: Patient1 is 41 years, before treatment (black) she managed to execute 40 items of the battery of 50 tests, after treatment (red) she managed to execute 46 items of the battery of 50.)
Teacch Methodology results for patients 1, 2, 3, 4
MTZ Methodology results for patients 1, 2, 3, 4
AMPS motricity and Methodology results for patients 1, 2 and 3
DOSEN methodology results for patients 1, 2, 3 and 4
FRAULICH and HAUPT methodology results for patient 5
Discussion
According to the particular character of each patient’s individual condition and possibilities, it was impossible to implement the same batteries for each patient, as the test batteries were chosen in relation to each individual patient’s aptitudes. This was the “price to pay” for assembling five patients that did not improve since at least five years in row without intervening and maybe biasing in the patients choice by the Direction board. Furthermore, these test batteries, although internationally used and inter-culturally standardized, offer no diagnostic relevance but merely a standardized objective assessment of the patient’s aptitudes and momentary psychomotor, social and emotional status.
However, these batteries cannot be ignored as they demonstrate the gaps but also the emergent characteristics from each tested individual, so permitting to option for new therapeutic goals within the daycare centre. One should thus consider this clinical pre-study as a study of five single cases tested before and after a specific Evolutionary Osteopathic approach during nine treatments.
Analyzing the results per patient, a progression is visible as well on a psychomotor, as on a social and emotional level. This progression varies between two and seventeen months of developmental age.
Looking closer to the three trisomy patients (P1, 2, and 3), one notes that in the emotional tests (Dösen) they make a jumpstart and this particularly in the management of anxiety:
- adaptation phase: 0-6 months
- socialization phase: 6-18 months
- first individualization phase: 18-36 months
- first identification phase: 3-7 years
The patient suffering from the Charles Martin Bell syndrome, did not demonstrate any evolution on that particular point.
These surprising outcome results were therefore shown to an externally independent ortho-pedagogic specialist who provided the following interpretation of the results:
“The clear evolution demonstrated by the results, is inexplicable with severely poly-handicapped patients, living in the same conditions, and having the same type of treatment since years. The only possible explanation for such a developmental Jumpstart in is that through the Evolutionary Osteopathic interventions, a release within the patients’ functioning must have occurred. There is clearly an acquisition and evolution of the anxiety factor in three out of the four patients that were tested by the emotional test of Dösen. The question that arises is: if it is -as it appears from this study- that the acquisition of the “anxiety factor” is the “release-factor” that started the progress on several other levels? This prospect alone is worth a study from Ortho-pedagogical point of view. The Dösen methodology (emotional development score) gain is important for patient 1 and spectacular for patients 2 and 3 whereas for patient 4 according to this test, maintains a steady state.”
The acquisition of the anxiety factor after the treatments in three of the four patients (tested with the Dösen methodology) should be understood as follows: “They are able to understand that bodily harm may come to them, with subsequent autonomy loss. Before the anxiety acquisition they did not manifest fear. Which from developmental point of view, and in daily activities is not only a significant sign of retardation but extremely dangerous when they are not under constant supervision. The anxiety acquisition seems to be the necessary starting factor for the significant jumpstart and further development of motricity and methodology in daily activities.”
The fact that some patients demonstrated a Jumpstart in methodology and others in motricity is normal in developmental evolution; methodology and motor control follow each other randomly, they never progress simultaneously, not even in “normal” evolution.
Several studies[1],[2],[3] but especially Benson’s study[4] have demonstrated that the state of mind or specific Evolutionary Osteopathic approach might have modified the patients “brainwave” patterns. This could provide a hypothesis as to this current outcome was achieved.
Conclusion
It appears that we may press the hypothesis forward that: anxiety is one of the main brakes of the psychomotor development for the people with a trisomy 21 syndrome.
These promising preliminary findings therefore support the need for a larger powered study using the newly developed Evolutionary Osteopathic approach. The danger though is as P. Skrabanek and J. Mc Cormick say in their book, Follies and fallacies in medicine[5].: «Big outcomes in small studies are at great risk of being overseen and neglected if they are not statistically significant. Type 2 errors.»
It seems important to us, to find the human and financial resources to continue and enlarge this type of approach directed research and to install within these patients, a new dialogue with this distant, suffering, and unknown body, to make it sensitive, moving and emotionally moving again. But even more it could help to provide an accurate working ground to Osteopathy, not solely as an osteo-articular too often “symptomatic” therapy but as a therapeutic art, based on Evolution and Osteopathic Philosophy and aimed towards the expression of health to its full potential.
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An EVOST practical study
