In this study, we could show as a key result that the issues of the children are in the focus of parental worries concerning clubfoot treatment, especially the assumed future motion and the assumed ability to play with other children. Further, we found a decrease of the worries in the course of treatment in line with the visible improvement in the clinical findings. Finally, we can report that the severity of parents’ concerns is independent of the severity of clubfoot.
In our study, we were able to prove the success of the Ponseti method by the highly significant improvement in the Pirani Score, like many authors before us. Due to the overwhelming success, treating clubfoot using the Ponseti method is essential for us. However, from a physiotherapeutic point of view there are opinions that criticize the immobilization in the plaster. An alternative treatment is the French functional method consisting of daily manipulations of the newborns’ clubfoot and temporary immobilization of the foot with nonelastic adhesive strapping (11). In experienced hands, this method achieved slightly inferior but comparable results (12). From a pathoanatomical point of view, we see immobilization as indispensable for remodeling the malformed structures of the tarsal bones (13), so that we only use the Ponseti method in our outpatient clinic.
In our study, we used the Pirani Score as a target parameter to describe the severity of deformity, consisting of midfoot and hindfoot contracture part and can range from 0 to 6 points (14). However, this classification is not to be viewed without criticism. Other classifications were e.g. described by Harrold and Walker (15), with a focus on the ability to correct the deformity. The Catterall system (16) is focused on the evolution of deformity and Diméglio (17) presented the most detailed scoring system with a scale of 0 – 20. In a comparison of the classifications by Wainwright et.al, the Diméglio system showed the highest reliability (18). However, the authors conclude that current classification systems for the analysis of congenital clubfoot are not entirely satisfactory. In a previous study by Agarwal et al. has examined the influence of the Pirani score on the number of casts and found a positive correlation between the parameters (19). Dyer et al. describe the Pirani score as reliable and easy to use with a good forecast about the expected treatment (5). Therefore, we decided to use the Pirani Score in our study. Comparing the determined values for the Pirani score at the beginning of treatment, we found similar results (Our results: 4.75, Fan et al:(1) 4.4, Agarwal et al:(19) 5.0).
The central topic of the study was the parents' fears and worries before and during clubfoot treatment. The Child Health Questionnaire and the American Academy of Orthopedic Surgeons Pediatric Outcomes Data Collection Instrument are two established measurement tools to describe the health status of children (20). But as far as we know, there is no established questionnaire targeting the parents of children with pediatric orthopedic problems in the known literature. Therefore, we had to develop a questionnaire to determine parental distress.
The first section in our questionnaire related to the psychological and physical stress related to the child's deformity. In the recent literature it is accepted, that parents of chronically impaired children e.g. intellectual disability are limited in their psychological and physical health (21-23). Therefore, we included the question of the parents’ current physical capacity and mental resilience in relation to the therapy of the child in our questionnaire.
Looking at the physical stress related to the child's deformity, the treatment of clubfoot does not seem to disturb the daily life of the parents, unlike parents whose children have chronic diseases. From the authors' point of view, this difference is due to the shorter duration of the exposure. In our study, most parents had only known about the deformity for a few days, so that no physical restrictions could develop yet.
In psychological stress our results indicate higher values, especially at the beginning of the treatment (T0). We observe a significant decrease in distress during treatment. In addition to the clinically visible decrease in clubfoot, the reasons for this can also be habituation effects to the weekly change of plaster and the deformity.
In another topic, we asked about the parents' own interests (partnership, spare time, finance, professional life), because elevated marital conflicts and divorces in parents with chronically impaired children are reported in the literature (24). In parents score, we also observed a slight distress of the parents, especially since the additional burden of the treatment is rather small in context with the changes in the daily life of the parents due to the care of the baby (25).
The child’s matters were divided in motion score and child score (general child concerns), in order to receive a more detailed result. In child score we detected the highest score values without relevant decrease during therapy. We were able to detect high fears and worries when asking about teasing, school and later careers. However, these fears seem essentially unfounded. Roye et al found in their survey of 46 clubfoot patients that 81% were never teased because of their clubfoot and 19% sometimes (9). From this data, it can be concluded that the risk of being teased for other reasons in adolescence (such as e.g. weight-based teasing) is much higher (26).
Contemplating the motion score, we found also high values, declining during therapy. We expected this decrease as a result of the positive feedback for the parents regarding the clinically improving deformity during treatment. These prospects are supported by the good outcome of the Ponseti method, in many endpoints comparable to normal feet, as Church et al showed in a follow-up examination of at least 5 year old children (27). In functional scores (e.g. PODCI (Pediatric Outcomes Data Collection Instrument) - transfer and basic mobility, - pain, - happiness) (28), no differences between clubfoot patients and the comparison group could be found.
The results of the survey in general showed small to medium concerns of the parents with a mean point score of maximum 3.11 (child score) and minimum 1.44 (parents score). From the authors' point of view, avoiding high point scores is primarily related to the informational discussion before the beginning of the study, in which the high success rate of conservative treatment according to Ponseti is explained in detail.
As a last important result, we found no correlation between the severity of clubfoot (Pirani Score) and the own mental resilience. On the contrary, a study participant whose child had a rather low Pirani score with a point value of 3 showed a particularly high own mental resilience of 5. Looking at life-threatening diseases in children, such as Cancer, there is a correlation between severity of the disease, number of complications and parental distress (e.g. disease-related fear, anxiety, depression etc.) (29). This effect could not be found in the lower stress situation of clubfoot treatment. This fact should be considered when dealing with affected parents in the daily routine and it should not be erroneously assumed that parents whose children have a discrete finding need less support.
Study limitations
One limitation of our study is the lack of validation of the questionnaire. The validation must be done in further studies before the quality of the questionnaire can be finally reported. Furthermore, the questionnaire was originally created in German and translated for publication. Errors can also arise during the translation. Nevertheless, the question of the present study on the worries and fears of parents during clubfoot treatment can be answered, from the authors´ point of view.