1.1

Material and method

A multicenter national cohort study was put in place by the Hospices Civils de Lyon in September 2009, and is currently on-going (385 patients are expected by December 2014) (whole study title: « Étude longitudinale d’une population d’enfants atteints d’une forme bilatérale sévère de paralysie cérébrale : incidence et évolution des complications orthopédiques et des douleurs en lien avec ces complications »). This non-interventional study involves following-up children aged from 4 to 10 years at inclusion, with cerebral palsy GMFCS level IV (tough self-mobility, children moved by a third person or using a powered mobility) and V (self-mobility extremely limited even with a technical assistance), on a 10-year period, at the rhythm of one visit per year. At each visit are collected clinical, orthopaedic, radiological and environmental data on a case report form (CRF), filled in by the investigator.

Patients can be recruited by centre hospitalo-universitaire (CHU), centre hospitalier général (CH), institut médico-éducatif (IME), institut or centre d’éducation motrice (IEM, CEM), service de soin et d’éducation à domicile (SESSAD), and centre d’action médicosociale précoce (CAMPS).

The primary objective of this cohort is to measure the incidence of orthopaedic complications (scoliosis and hip joint) depending on patients’ age. The secondary objectives are to describe the sequences over time of these complications and the related pain, to explore the impact of nutrition, surgery, asymmetric postures and environmental factors, and to describe the medical and rehabilitative follow-up of these children.

To record on the CRF the type of rehabilitations of the child, the investigator has to choice between 11 items: “physiotherapy”, “ergotherapy”, “psychomotility”, “speech therapy”, “orthoptist”, “psychologist”, “nurse”, “home auxiliary”, “special-education teacher”, “patterning by Doman’s method”, and “others”. Duration and frequency of each type of rehabilitation is recorded on the CRF (time of care in hour/minutes per day, week or month). We have also asked if this rehabilitation seemed adapted to the child’s needs according to the investigator: the opinion of the investigator regarding adaptability of cares is requested as follows: “perfectly adapted to her/his needs”, “relatively adapted to her/his needs”, “not adapted to her/his needs”, or “harmful for the child”.

Data on the current life environment of the child are collected on the CRF through two questions: “does the child live in a familial environment?”; “does the child frequent a community?”, to which the investigator should answer “yes” or “no”.

In this article, we explored data related to the rehabilitation care from the first 190 children included in the cohort study. Data analysis related to rehabilitation was performed on only 188 patients (2 patients did not meet inclusion criteria: 1 patient is GMFCS III level, and 1 patient is aged less than 4 years at inclusion). We focused on the 4 main types of paramedical care received by children (physiotherapy, ergotherapy, psychomotility, and speech therapy), comparing their frequencies in medico-social sector and in liberal sector. We compared as well these rehabilitations according to children’s GMFCS IV or V levels. We studied the investigator’s opinion as for the child rehabilitation appropriateness according to her/his GMFCS level, and according to her/his types of rehabilitation: in structure of care or in liberal sector.

We define a structure of care as a team made up of paramedical and educational providers who ensure the rehabilitation of children with motor handicap. As for liberal sector, it includes independent professional practitioners, chosen and financed by the family.

In Tables 1–4 presenting the results, frequency comparisons were performed by Fisher exact tests, and comparisons of duration between groups by non-parametric significance Mann-Whitney tests. The significance threshold was fixed at 0.05. Analysis was performed with the software Stata version 12.

The cohort study has been qualified as “not interventional” by the ethics committee CPP Sud Est II, and do not enter in the field of application of the Bioethics law; however, it has been submitted to the ethics council Hôpital Femme-Mère-Enfant, and was approved by it. All subjects’ families provided oral consent for the participation of their child.

1.2

Results

The mean age of the 190 patients at inclusion is 6 years 10 months (SD 2.0); 111 children are boys, 79 are girls.

The main aetiology of cerebral paralysis is antenatal (most often linked to brain malformation) in 34.73% of children (58 children of the 167 children with known aetiology), per natal (more often linked to prematurity) in 58.68% of children (98/167), and postnatal (more often linked to epilepsy) in 20.96% of children (35/167).

Among them, 67.89% (129 of the 190) of children without oral language, 31.01% (40 of the 129) have a reliable code to say “yes” or “no”.

Also, 96.84% of the children have upper limb disease (“visible trouble according to the specialist”, “obvious trouble” and “impossible function”) for at least one upper limb, that is 181 children out of 190.

These children frequent a community (place where the child regularly mixes with other children: school, childcare center, educational establishment…) in 87.89% of cases (167 patients out of 190).

The children who have their paramedical care only in a structure (67.37%, 128 subjects out of 190) have a mean of 4.47 different types of paramedical care (among: physiotherapy, ergotherapy, psychomotility, speech therapy, orthoptist, psychologist, nurse, home auxiliary, special-education teacher, and patterning by Doman’s method). Those who have the two modes of paramedical care in structure and in liberal sector (23.16%, 44 subjects out of 190) have a mean of 3.73 different types of paramedical care in structure, and 1.44 different type of paramedical care in liberal sector. When children have their paramedical care only in liberal sector (8.95%, 17 subjects out of 190), they have a mean of 1.88 different type of care.

Results presented in Tables 1–4 contain data from eligible patients only ( n = 188): the two patients who did not meet the selection criteria (1 patient GMFCS III level [rehabilitation in liberal sector only], and 1 patient aged 20 months at inclusion [rehabilitation in structure of care only]) were not taken into account in these analysis.

Table 1 gives the duration of paramedical care according to the place of children, in structure of care and/or in liberal sector. The majority of the children have, per week, 2 hours of physiotherapy, 1 hour of ergotherapy, 1 hour of psychomotility, all populations mixed. We observe a significant difference on the cumulative duration of paramedical cares per week, between patients who are only in a structure of care (median 4.25 h/week [1.00–12.00]; mean 4.63 hours [SD 2.35]) and those who are only in liberal sector (median 2.00 h/week [0.50–5.00]; mean 2.21 hours [SD 1.34]) (non-parametric significance Mann-Whitney tests, P < 0.0001).

Among the 16 children followed-up in liberal sector only, 15 receive physiotherapy care, data contrasting with the other cares (4 children receive speech therapy, 3 ergotherapy, and only one psychomotility).

Table 2 shows the opinion of the investigators regarding the appropriateness of the care received by the children, depending on the type of paramedical care: in structure of care, in liberal sector, or in both sectors. There is a significant difference on the appropriateness of the care between these three types of care, in favour of care in medico-social sector only (Fisher exact test, P < 0.001). According to the investigators’ opinion, the children’s care in structure only is in majority perfectly adapted to their needs (71.65% of cases [91 children out of 127]), while in liberal sector only, it is in majority relatively adapted (43.75% of cases [7 children out of 16]). We find a majority of perfectly adapted rehabilitations (63.64% of cases [28 children out of 44]) for children followed in both medico-social and liberal sectors.

Table 3 gives the opinion of the investigator regarding the appropriateness of the care received by children, according to their GMFCS level. We note that this care is qualified as “not adapted” for 9 children GMFCS V level on 128 (7.03%) and only 1 child GMFCS IV level on 60 (1.67%). However, no significant difference was observed on the appropriateness of the paramedical care between these two groups (Fisher exact test, P = 0.287).

None of the investigators noted “harmful for the child”: this line was not represented in Tables 2 and 3 .

Table 4 shows a significant difference on the cumulative duration of paramedical cares between patients GMFCS IV and V levels (non-parametric significance Mann-Whitney tests; P = 0.0424), with a median duration of 4.50 h/week [1.00–13.25] (mean 5.03 hours, SD 2.84 hours) for patients GMFCS IV level, and a median duration of 3.50 h/week [0.50–10.00] for patients GMFCS level V (mean 4.07 hours, SD 2.10 hours).

1.3

Discussion

This paper presents original data from a French multicenter cohort study of children with severe cerebral palsy; results from this study are therefore representative and can be applied to the different French structures of care. The primary outcome of this work is to determine the type and the duration of paramedical cares received by the first 190 children included in the cohort.

Children who are solely followed-up in medico-social structure (CAMSP, SESSAD, IEM, IME) have a rehabilitation marked by a multidisciplinary approach (at least 4 different types of care per week) and by the duration of the care (4.25 h/week). This rehabilitation care is judged to be perfectly adapted by the investigators in 71.65% of cases in medico-social sector, against only 18.75% of cases in liberal sector. Indeed, children followed-up in liberal sector receive essentially physiotherapy, which underlines the difficulty to obtain a multidisciplinary approach in liberal sector.

We can ask why 11.58% of these children do not have their paramedical care in a dedicated structure (22 children on 190 live exclusively in a familial environment, without frequenting any communities).

Our experience shows that some parents want to totally control the rehabilitation care of their child, to the point of refusing the integration of the child in a structure of care.

For some families, suppression of social assistance allowances, when the child has his paramedical care in structure, in particular for children the most reliant, can also be a hindrance to this integration.

It is possible that children with bad health (respiratory difficulties, very low weight) cannot have paramedical care in structures of rehabilitation because the priority in this kind of structures is not the health, and vital medical care cannot be given.

For other cases, it can be the lack of structures of care close to their house, which would oblige the child to sleep in the structure. That may not be acceptable for the family, especially if the child is very young , so the child has paramedical care in liberal sector and can live with his family.

These children with severe motor disabilities, regardless of their type of follow-up (in liberal or in medico-social sector), spend more time in physiotherapy than in the other paramedical cares (twice as much). This is coherent with the major orthopaedic complications expected in these children who cannot walk. However, even if the orthopaedic issue is dominant, children also need to communicate (67.89% of them have no oral language), to be able to stay seated without pain and to favour the use of upper limbs (96.84% of them have also upper limbs disease) and at the end, they also need to experiment their motility even if it is very poor. So speech therapy, ergotherapy and psychomotility must not be neglected .

We observe a difference of paramedical care according to the severity of the disease. Children who have the most severe disease have less time dedicated to re-education duration less important than the others. This observation is paradoxical: we expected, on the contrary, that children with the most severe disease would have more paramedical care than the other ones, just like in the French study of Sacaze et al. in 2012 , showing a number of paramedical cares increasing with the deficiency in 133 children with cerebral palsy, all GMFCS levels mixed, or in the survey among physiotherapists, carried out in the United States by Combe et al. in 2012 .

Maybe paramedical teams have no more motivation to take care of children who do not progress. Indeed, these children do not express particular needs and their degree of satisfaction is difficult to assess, the functional acquisitions that they are able to gain are very slow, the objective of rehabilitation is long-term prevention or a comfort objective, which results are very difficult to estimate . If so, in order to have equity for these persons, maybe it would be interesting for the rehabilitation team to beneficiate from a particular support to better take care of the most deprived, and to deliver the cares in a more fitted manner?

However, this hypothesis can be contradicted. The children the most affected and not able to progress may need less paramedical care (physiotherapy, speech therapy…) with more educational care (time of leisure, of releases, of wellness…), having as main objective a better quality of life and not a functional improvement. Indeed, the rehabilitation of children, whatever their disease, must have reasonable, reachable objectives, helping to have a life with better quality.

1.4

Limits of the study

The case report form has been built for the study “Cohorte PC”, which objective is different from the objective of this work. However, given that data related to the rehabilitation issue are detailed and accurate, it has seemed interesting to us to report it.

Among eligible patients, only 16 children are followed-up in liberal sector although the institution group represents 127 children, which limits the study relevance.

The study was proposed to paediatric investigators specialized in physical and rehabilitation medicine, practicing in hospital or in medico-social sector. Now only investigators in hospital follow children without structure of care, and they are less numerous, sometimes not represented in some regions. Children without structure of care are then followed-up by their general practitioner, and are eluded from the study recruitment.

The opinion of the investigator on the appropriateness of the care is a subjective opinion, and it is most often the investigators of the structures where are delivered the cares who assessed this appropriateness. These subjective results, even though they confirm the a priori observed results related to multidisciplinary approach and rehabilitation care durations, should be adjusted, because it is impossible to judge the care’s quality, which depends in great part on the therapists’ quality.

1.5

Conclusion

The important sample size (190), its national recruitment, its homogeneity, and the simple quantitative data (effective time of care sessions and number of different rehabilitations) permit to observe that the care of non-ambulatory children with cerebral palsy (GMFCS IV or V levels) is multidisciplinary (4 different types of rehabilitation per week), with reasonable care durations of 4 hours 15 per week.

The most affected children (GMFCS V level) have less time of rehabilitation than the IV level. Is their need most in favor of an educational care (time of leisure, of releases, of wellness) with the goal of increasing quality of life and not increasing functional improvement, or does the rehabilitation team need to beneficiate from a particular support to face a difficult care in know-how and in interpersonal skills?

Disclosure of interest

The authors declare that they have no conflicts of interest concerning this article.

Acknowledgements

The study cohort originates from these results has been funded by a national PHRC (Projet Hospitalier de Recherche Clinique) in 2009, by La Fondation Motrice, and by the Association Lyonnaise de Logistique Posthospitalière (ALLP). We care for acknowledge the study investigators participating actively to the patients’ recruitment in the cohort: Dr Béatrice Bayle, Dr Carole Berard, Dr Jean-Claude Bernard, Dr Véronique Bernier-François, Dr Mireille BIRCK, Dr Emmanuelle Blangy, Dr Véronique Bombart, Dr Véronique Bourg, Dr Sylvie Brau, Dr Isabelle Chapurlat, Dr Christophe Charbonnier, Dr Bertrand Chupin, Dr Denis Colin, Dr Marie-Charlotte D’Anjou, Dr Capucine De Lattre, Dr Anne Descotes, Dr Dominique Dipanda, Dr Claire Do Ngoc Thanh, Dr Stéphanie Fontaine Carbonnel, Dr Monique Gautheron, Dr Vincent Gautheron, Dr Thierry Gillain, Dr Pascal Granier, Dr Houcine Jabbari, Dr Véronique Jomain-Guedel, Dr Jean Lachanat, Dr Véronique Lavarenne, Dr Daniel Lebellego, Dr Hélène Le Tallec De Certaines, Dr Véronique Morvan, Dr Claire Mugnier, Dr Dominique Pichancourt, Dr Anne-Emmanuelle Piquet-Massin, Dr Véronique Quentin, Dr Clotilde Rivier Ringenbach, Dr Marie-Ange Rohon, Dr Christelle Rougeot, Dr Chrystelle Schepens, Dr Martine Schmuck, Dr Claude Simonnot, Dr Chantal Tessiot, Dr Véronique Tsimba, Dr Fabienne Turcant Roumenoff, Dr Jean-Pierre Vadot, Dr Alain Verlaine, Dr Trung Vo Toan, Dr Anne Wilquin, Dr Laure Yvart.

2.1

Patients et méthodes

Une étude de cohorte nationale multicentrique a été mise en place aux hospices civils de Lyon en septembre 2009, et est actuellement en cours de constitution (385 patients sont à recruter d’ici décembre 2014) (titre complet de l’étude : « Étude longitudinale d’une population d’enfants atteints d’une forme bilatérale sévère de paralysie cérébrale : incidence et évolution des complications orthopédiques et des douleurs en lien avec ces complications »). Cette étude non interventionnelle consiste à suivre des enfants âgés de 4 à 10 ans à l’inclusion, atteints de paralysie cérébrale de stade GMFCS IV (déplacement autonome difficile, enfants déplacés par une tierce-personne ou utilisant un fauteuil roulant électrique) et V (autonomie de déplacement extrêmement limitée même avec une aide technique), sur une période de 10 ans, au rythme d’une visite par an. À chaque visite sont recueillies des données cliniques, orthopédiques, radiologiques et environnementales sur un cahier d’observation (CRF) rempli par le médecin investigateur.

Les patients peuvent être recrutés par des centres hospitalo-universitaires (CHU), des centres hospitalier généraux (CH), des instituts médico-éducatifs (IME), des instituts ou centres d’éducation motrice (IEM, CEM), des services de soin et d’éducation à domicile (SESSAD), ou des centres d’action médicosociale précoces (CAMPS).

L’objectif principal de l’étude de cohorte est de décrire l’incidence des complications orthopédiques (scoliose et excentration de hanches) en fonction de l’âge des patients. Les objectifs secondaires sont de décrire la séquence temporelle de survenue de ces complications et de la douleur associée, de chercher l’impact de l’état nutritionnel, du traitement chirurgical, des temps de postures asymétriques et des facteurs environnementaux, et de décrire le suivi médical et rééducatif de ces enfants.

Pour retranscrire dans le CRF le type de prise en charge de l’enfant, l’investigateur a le choix entre 11 items : « kinésithérapie », « ergothérapie », « psychomotricité », « orthophonie », « orthoptie », « psychologue », « infirmière », « auxiliaire de vie », « éducateur spécialisé », « Patterning Doman », et « autres ». La durée et la fréquence de ces différentes prises en charge est recueillie sur le CRF (temps de prise en charge en heures/minutes par jour, semaine ou mois). Nous avons également demandé si cette prise en charge paraissait adaptée aux besoins de l’enfant d’après le médecin : l’opinion de l’investigateur sur la prise en charge du patient peut être : « parfaitement adaptée à ses besoins », « moyennement adaptée à ses besoins », « non adaptée à ses besoins », ou « néfaste pour l’enfant ».

Les données sur le lieu de vie actuel du patient sont recueillies sur le CRF sous forme de deux questions : « l’enfant vit-t-il dans un environnement familial ? » ; « l’enfant fréquente-t-il une collectivité ? », auxquelles l’investigateur doit répondre par « oui » ou par « non ».

Dans cet article, nous avons décrit les données concernant la prise en charge rééducative des 190 premiers patients inclus dans l’étude de cohorte. L’analyse des données relatives à la rééducation ne porte que sur 188 patients (2 patients inclus à tort : 1 patient stade III de la GMFCS, et 1 patient âgé de moins de 4 ans à l’inclusion). Nous nous sommes focalisés sur les 4 principaux types de rééducation dont bénéficiaient les enfants (kinésithérapie, ergothérapie, psychomotricité, et orthophonie), en comparant les fréquences de prises en charge en structure et en milieu libéral. Nous avons également comparé ces prises en charge selon le stade GMFCS IV ou V des enfants. Nous avons étudié l’opinion de l’investigateur quant à l’adéquation de la prise en charge du patient selon son grade GMFCS, et selon son type de prise en charge : en structure de soins ou en milieu libéral.

Nous entendons par structure de soins, une équipe composée de professionnels paramédicaux et éducatifs, assurant la prise en charge rééducative des enfants avec handicap moteur. Nous entendons par milieu libéral, un milieu comprenant des thérapeutes travaillant à leur compte, qui sont choisis et financés par la famille.

Dans les Tableaux 1 à 4 présentant les résultats, les comparaisons de fréquences ont été effectuées par des tests exacts de Fisher, et les comparaisons de durées entre les groupes par des tests non paramétriques de Mann-Whitney. Le seuil de significativité a été fixé à 0.05. Les analyses ont été réalisées avec le logiciel Stata version 12.

Tableau 1

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