1.2.1

Study design

Descriptive, observational, single-center study conducted in a Pediatric Physical Medicine and Rehabilitation (PM&R) center of reference. Recruited subjects were ambulatory children with cerebral palsy who had multilevel surgery. The evaluation was done based on self-assessment questionnaire and semi-directed interviews. This study was approved by the local Ethics committee and all parents signed an informed consent form before study inclusion.

1.2.2

Characteristics of the studied population

The following inclusion criteria for the study were:

• •
  

  children diagnosed with cerebral palsy and ambulatory capacities [Gross Motor Function Classification Scale (GMFCS) I to III];

  
  
• •
  

  children aged < 18 years old at the time of surgery;

  
  
• •
  

  children who had multilevel surgery in the Lorraine regional university hospital center between 2009 and 2011. To be defined as multilevel surgery, the procedure had to include in a single surgical procedure at least two muscle–tendon (lengthening or transfer) or bone surgical gestures on one or two limbs;

  
  
• •
  

  children who spent their post-surgical rehabilitation in the regional reference PM&R center of Lorraine, France.

Exclusion criteria were children with mild intellectual disability (intelligence quotient below 70), as well as children and/or parents who refused to participate to the study.

1.2.3

Collected data

All data were collected between November 2012 and May 2013, by the team who took care of the child, during a half-day evaluation of the multilevel surgical outcomes. Children and the parent present during this evaluation filled out, independently, a self-assessment questionnaire on the child’s quality of life. They also participated in a semi-directed interview regarding their satisfaction pertaining to surgical outcomes and perception of gait evolution. Furthermore, surgical-related data were collected from the patients’ medical charts.

1.2.4

Statistical analysis

All data collected were the object of a descriptive analysis, with quantitative variables expressed in mean (± standard deviation) and qualitative variables expressed in numbers ( n ) and percentages (%).

The scores of the 2 dimensions of the CP-specific module of the DISABKIDS were computed for children and their parents. The intraclass correlation coefficient (ICC) was used to calculate the correlation for continuous variables between parents and children. For qualitative variables, the correlation was estimated by the prevalence and bias-adjusted kappa (PABAK) comprised between –1 and +1 associated to the prevalence index (PI) and bias index (BI).

A bias between the judges (BI) exists when a response modality is more reported by one person than the other. The prevalence index (PI) exists when an answer is overly reported by children or their parents. This was the case in this study so we used PABAK .

The interpretation of the ICC and PABAK indexes is based on the Landis and Koch classification, i.e.:

• •
  

  0.21 to 0.40 low correlation;

  
  
• •
  

  0.41 to 0.60 moderate correlation;

  
  
• •
  

  0.61 to 0.80 good correlation;

  
  
• •
  

  0.81 to 1.00 excellent correlation .

We used the SAS 9.3 software for the statistical analysis [SAS Inst., Cary, NC]. Differences were considered significant at P < 0.05.

1.3.1

Demographics

Overall 19 patients were eligible for the study. Three children were lost to the touch (two moved to another region, one patient remained unreachable). After having delivered complete information on the study, 4 parents refused for their children to participate. The main reasons were: previous involvement in other studies, medical care management already requiring too much time and thus refusing additional appointments. In the end, 12 families were enrolled in the study.

The main demographic and surgical characteristic of the 12 children who participated in the study are listed in Table 1 .

Children who participated in the study, including 83% of boys, had a mean age of 14 at the time of surgery ( R ; 11–18) and a mean delay of 2.5 year between surgery and the day of the functional assessment.

The day of the functional assessment, 6 children (50%) were GMFCS level 3, two were GMFCS level 2 and four were GMFCS level 1. Ten children presented with spastic diplegia CP and 2 with hemiplegic CP. Seven children/adolescents were in a normal school program, 4 children had special assistance in school and one patient was out of school.

In average, the surgery included 8 procedures with at least one bone procedure and one muscle–tendon procedure. Six patients benefited from a 3-level surgery (hip, knee and ankle-foot) and the other 6 children had a 2-level surgery. The mean postoperative hospitalization in a PM&R center was 6 months ( R : 2–10 months).

1.3.2

Quality of life

The DISABKIDS questionnaire was completed by the 12 families. The quality of life scores of the two dimensions of the DISABKIDS reported by children and their parents are presented in Fig. 1 .

Quality of life measured using the specific cerebral palsy module of the DISABKIDS questionnaire.

For the functional impact domain, mean scores were 81.0 (min: 57.5; max: 97.5; SD: 13.7) and 79.4 (min: 65; max: 92.5; SD: 9.8) for children and parents, respectively. Regarding the communication domain, mean scores were 88.5 (min: 37.5; max: 100; SD: 22.3) and 83.3 (min: 37.5 max: 100; SD: 26.3) for children and parents, respectively. There was no statistically significant difference between the score reported by parent and the one reported by their children (functional impact P = 0.58 and communication P = 0.61) ( Fig. 1 ).

There was a moderate parent–child correlation for the functional impact domain (ICC = 0.58; P < 0.0178) and a high correlation for the communication domain (ICC = 0.73; P < 0.0025). In the functional impact domain, 7 parents out of 12 underestimated the quality of life perceived versus the quality of life reported by their child, and 5 parents overestimated it. Regarding the communication domain, 11 parents had exactly the same perception as their child and 1 parent underestimated his/her child’s perception.

1.3.3

Satisfaction towards surgery

One parent did not answer the questions during the semi-directed interview because of time constraints.

Regarding satisfaction, 92% of children and 91% of parents were satisfied with the surgical outcomes with a good parent–child correlation (PABAK: 0.64).

The mean global satisfaction rate was 8.3/10 for parents and children. There was a moderate correlation between the satisfaction score for parents and children (ICC = 0.52; P = 0.04).

Overall, 83% of children and 91% of parents would in hindsight agree to have the surgery again. The reasons regularly brought forward were that surgery either improved gait or it prevented further loss of gait abilities. Several children or parents noticed an improvement in self-confidence, especially in the way others looked at them. However, most described a long and difficult journey from the surgery procedure and time spent in the rehabilitation center in order to achieve maximum improvement.

1.3.4

Perception of the evolution of the children’s general state and most specifically gait

Results, issued from the semi-directed interview pertaining to the perceived changes regarding the child’s general state and gait, are presented in Table 2 . For all these questions, the PABAK coefficient ranged between –1 and +1.

In fact, 83% of children reported that their life was easier since surgery. They underlined that they felt better about themselves, less disabled, that moving around was easier and that overall “everything was a little easier”.

Children who used to fall before surgery (67%) reported that falls were less frequent or absent all together. Overall, children perceived that they were able to stand up (66.7) and walk (91.7) for longer period of times.

Among the 4 patients who wore orthopedic shoes prior to surgery, 2 of them were able to get rid of the shoes after surgery.

For the 9 patients (75%) who reported pain before surgery, 5 of them perceived being in less pain, whereas 4 thought they were in more pain.

Overall for the 12 children, 5 of them had started a new physical activity since surgery. Most children thought they were walking faster (66.7%), that walking required less energy (83.3%), they perceived that their knees (100%) and feet (100%) were less turned inwards, and that they were better able to put their feet flat on the floor (91,7%), and that during gait their feet were dragging less on the floor (83,3%).

1.4.1

Quality of life studies after multilevel surgery

To date, only 7 publications have assessed quality of life or satisfaction of children and/or their parent after multilevel surgery. Cuomo et al., in 2007, were the first who studied quality of life progression after multilevel surgery . In multicenter study on a population of 57 ambulatory CP children who benefited from multilevel surgery on soft tissues, the authors used the Pediatric Quality of Life Inventory (PedsQL), which is a multidimensional (Physical, Emotional, Social, School Functioning) generic QoL scale , before and after surgery. They observed an improvement for the total QoL score of the parent version (+17.6%; P < 0.001) and for the physical dimension of the scale (+25.0%; P < 0.001). They observed the same thing, but in a statistically non-significant manner for the total score of the child’s version (+8.4%; P = 0.104) and the physical dimension (+8.6%; P = 0.189). Gorton et al. also used the PedsQL and reported similar results .

Himpens et al. evaluated the quality of life of children after multilevel surgery using the Cerebral Palsy Quality of Life Questionnaire for Children (CP QOL-Child) as well as their own self-designed questionnaire, in 40 children and their parents. They classified subjects according to their age, GMFCS level, as well as time elapsed since surgery. Their results showed a high quality of life score on the CP QOL-CHILD. For all the questionnaire’s domains, scores reported by children were significantly higher than those reported by their parents. Significant differences were found for the functional-related domains of the CP QOL-Child between GMFCS level III and levels IV–V, but not for the socio-emotional domains. Older children at the time of surgery (15–18 years of age) reported significantly less pain and feeling about disability than younger children operated between 10 and 14 years of age. All aspects evaluated in the author’s own questionnaire, i.e. ability to accomplish activities of daily living (ADL), physical activities and mood were improved after surgery.

The present study finds results similar to the ones reported by Himpens regarding the questionnaire designed by the author with perceived improvements in gait, pain, physical activity and fatigue.

1.4.2

Studies on satisfaction after multilevel surgery

Capjon and Bjørk conducted a study on 8 children with cerebral palsy and their parents, which included a semi-directed interview evaluating family situation, rehabilitation, and multidisciplinary cooperation after surgery. Children who reported little pain after surgery were satisfied with the procedure with an improvement in strength and gait capacities, leading to better social participation. Some children considered that there was very little physical improvement, those children had experienced severe pain after surgery. Most families found that there was a lack of information and communication regarding the different levels of rehabilitation available, and that the rehabilitation programs were difficult .

Borowsky et al. focused on parents’ satisfaction after this type of surgery. The study included 52 children with CP. During a follow-up consultation, the authors conducted a subjective evaluation on the satisfaction of parents post-surgery. Forty-three parents (82.6%) reported an improvement post-surgery and declared that they would take the same decision all over again. Five parents (9.6%) noticed no real improvement in their child’s life and 2 parents (3.8%) noted some deterioration .

Lee et al. also assessed parents’ satisfaction and parameters influencing their satisfaction. The study included 279 patients with CP. Their satisfaction was evaluated using a visual analog scale (VAS) from 0 to 10. Parents whose child was classified as GMFCS I were more satisfied than those whose children were GMFCS II and III. Satisfaction was higher when the procedure was unilateral than bilateral. After multiple regression analysis, several predictive factors of satisfaction were isolated: good GMFCS level pre-surgery, spastic hemiplegic CP type, being older at the time of surgery and longer follow-up . The same authors (Lee et al.) studied the evolution of the Pediatric Outcomes Data Collection Instrument (PODCI) scores after multilevel surgery and assessed the relationship between the improvement of the scale’s score and parents’ satisfaction level in 61 parents of ambulatory CP children. Factors significantly correlated to parental satisfaction after multilevel surgery were: older age at the time of surgery, good GMFCS level and importance of improvement in the sport and physical activity category of the PODCI .

Regarding satisfaction with surgical outcomes, this study found results similar to those reported in the literature with a good level of satisfaction. Lee et al., who also evaluated parents’ satisfaction and parameters influencing their satisfaction, found a mean satisfaction score of 7.9, close to our mean score of 8.3.

1.4.3

Correlation between the opinions of parents and their children

The present study is the only one with the one published by Himpens et al. that focused on measuring children’s quality of life as perceived by children themselves and their parent, as well as the correlation between the answers provided by children and their parent after this type of surgery. Himpens et al. showed significantly higher scores in children/adolescents in their study vs. parents in all the CP QOL domains. Other authors, such as Majnemer et al. using PedsQL in school-age children with CP, conducted a study outside of a surgical context and found a moderate to important correlation coefficient and thus reported that the vision of parents and children were comparable.

Contrarily to the Himpens’ study, our study found a moderate to important correlation between the perception of parents and children regarding the quality of life of the operated child, however similarly to other studies, parents had a tendency to underestimate the quality of life of their child. Our study found results close to those reported by Majnemer et al. but their study did not focus surgical outcomes.

Our study, with the one from Capjon and Bjørk, is the only one evaluating the satisfaction of children and not only their parents. Several studies have underlined the importance of not only focusing on the parents’ point of view. Most studies show that parents underestimate their child’s quality of life, regardless of their child’s pathology. Varni et al. reported that children with cerebral palsy were able in more than 50% of cases to evaluate their quality of life and that we should limit third-party evaluations to children enable to self-assess their quality of life or use these third-party evaluations to study the correlation between the perception of parents and their children .

Our study found a good parent–child correlation regarding the quality of life measures for children after multilevel surgery. For children who are able to self-assess their state, their opinion should be taken into account as soon as possible.

The parent–child correlation evaluation was done with the only parent who attended the half-day evaluation, mainly mothers. In fact, it was not possible for most children to be accompanied by both their parents due to the duration of the evaluation and distance between the family’s home and location of the study center (which was frequently a problem).

In spite of having tried to be as thorough as possible, we realize that the number of participants to the study was quite low. The results from the questionnaire designed by the author must be interpreted with caution, since it was not previously validated for reliability. The great variability in delays between surgery and the evaluation as well as the absence of preoperative data might have led to overestimating the quality of life as underlined by Gage et al. . Furthermore, a longitudinal study is required to show the impact of multilevel surgery on the quality of life of children with CP with a pre- and postoperative evaluation. This could also facilitate the evaluation of the parent–child correlation according to these two specific pre- and postoperative measures. The present study should be considered as a pilot study on ambulatory children with CP regarding the correlation between the perception of parents and perception of their children regarding quality of life and satisfaction after multilevel surgery. Further multicenter studies would be needed to validate these results. Selecting candidates for this type of therapeutic program is difficult because of the complexity of the surgery, high requirements of the subsequent rehabilitation stay, eventual neuro-psychological or behavioral disorders, and sometimes limited comprehension of the parents.

2.2.1

Schéma général de l’étude

Étude observationnelle à visée descriptive monocentrique, réalisée dans un centre de médecine physique et de réadaptation pédiatrique de référence au niveau régional, auprès d’enfants paralysés cérébraux marchants ayant bénéficié d’une chirurgie multi-étagée à partir d’auto-questionnaire et d’entretien semi-dirigé. Cette étude a été approuvée par le comité d’éthique local et un consentement éclairé a été signé par chaque parent participant à l’étude.

2.2.2

Caractéristiques de la population étudiée

Pour participer à cette étude, les enfants devaient répondre aux critères d’inclusion suivants :

• •
  

  être paralysé cérébral marchant (Gross Motor Function Classification Scale (GMFCS) I à III) ;

  
  
• •
  

  avoir moins de 18 ans révolus au moment de la chirurgie ;

  
  
• •
  

  avoir bénéficié d’une chirurgie multi-étagée dans l’établissement hospitalo-universitaire de référence régionale, Lorraine, France, entre 2009 et 2011. Pour être définie comme chirurgie multi-étagée, l’intervention chirurgicale devait comporter lors d’un seul temps opératoire au moins deux gestes chirurgicaux musculo-tendineux (allongement ou transfert musculaire) ou osseux, sur un ou deux membres inférieurs ;

  
  
• •
  

  avoir bénéficié de la rééducation postopératoire au centre de médecine physique et de réadaptation pour enfants de référence régionale, Lorraine, France.

Les enfants qui présentaient une déficience intellectuelle légère (quotient intellectuel en dessous de 70), ou les enfants et/ou leur parent qui refusaient de participer à l’étude n’étaient pas inclus dans l’étude.

2.2.3

Données recueillies

Toutes les données ont été recueillies entre novembre 2012 et mai 2013, lors d’une demi-journée d’évaluation de la chirurgie multi-étagée, durant laquelle les enfants et le parent présent ont répondu, et ce de manière indépendante, à un auto-questionnaire de qualité de vie de l’enfant et à un entretien semi-dirigé par le médecin responsable de l’étude concernant la satisfaction vis-à-vis de la chirurgie et leur perception de l’évolution de la marche. De plus, des données liées à la chirurgie ont été recueillies à partir du dossier médical des patients.

2.2.4

Analyse statistique

Une analyse descriptive de l’ensemble des données recueillies a été réalisée, telle que les variables quantitatives sont exprimées en moyenne (± écart-type) et les variables qualitatives par l’effectif ( n ) et leur proportion (%).

Les scores des 2 dimensions du module spécifique PC du DISABKIDS ont été calculés, pour les enfants ainsi que les parents. La concordance parent–enfant est estimée pour les variables continues, par le coefficient de corrélation intra classe (CCI). Pour les variables qualitatives, la concordance est estimée par le coefficient kappa ajusté sur le biais de prévalence (PABAK) compris entre –1 et +1, accompagné des indices PI (Prevalence Index) et BI (Biais index).

Un biais entre les juges (BI) existe lorsqu’une modalité de réponse est plus souvent rapportée par l’un que par l’autre. Un effet de prévalence (PI) existe lorsqu’une modalité de réponse est majoritairement rapportée, que ce soit par les enfants eux-mêmes ou par leur parent. Ce qui est le cas, pour cette étude, d’où l’utilisation du PABAK .

L’interprétation des indices CCI et PABAK est basée sur la catégorisation faite par Landis et Koch, à savoir :

• •
  

  0,21 à 0,40 concordance faible ;

  
  
• •
  

  0,41 à 0,60 concordance modérée ;

  
  
• •
  

  0,61 à 0,80 concordance bonne ;

  
  
• •
  

  0,81 à 1,00 concordance excellente .

L’analyse statistique a été réalisée à l’aide du logiciel SAS 9.3 [SAS Inst., Cary, NC]. Les différences étaient considérées significatives avec p < 0,05.

2.3.1

Caractéristiques démographiques

Dix-neuf patients étaient éligibles à l’étude. Trois enfants étaient perdus de vue (deux pour cause de déménagement dans une autre région, une patiente est restée injoignable). Après avoir reçu une information éclairée de l’étude, quatre parents ont refusé que leur enfant y participe. Les principaux motifs de refus étaient la participation antérieure à d’autres études, une prise en charge médicale considérée comme consommatrice en temps, d’où un refus pour un nouveau rendez-vous. Au final, 12 familles ont participé à la présente étude.

Les principales caractéristiques démographiques et chirurgicales des 12 enfants ayant participé à l’étude, sont présentées dans le Tableau 1 .

Tableau 1

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