Orthodontic treatment for disabled children: a survey of parents’ attitudes and overall satisfaction

Orthodontics and Dentofacial Orthopedics is “the dental specialty that includes the diagnosis, prevention, interception and correction of malocclusion, including neuromuscular and skeletal abnormalities of the developing or mature orofacial structures” [1]. The prevalence of severe malocclusion is particularly high among individuals with physical and/or mental disabilities [2, 3].

Not only do orthodontic alterations compromise oral function, they also represent an obstacle to the social acceptance of physically and learning disabled persons from an aesthetic point of view [4‐6]. It has been estimated that approximately 75% of patients with disability require orthodontic treatment (OT) to achieve and maintain an optimal occlusal relationship necessary to ensure adequate oral function and aesthetic appearance [5, 6]. The cooperation of disabled patients and of their parents is central to the success of OT [7], as treatment can involve ethical dilemmas that have been discussed in detail elsewhere [8].

The OT of disabled patients has been examined in a number of case reports and case series in the literature [9‐11]. Parents play an important role in the uptake of orthodontic care and are the single most important factor in the motivation for treatment [12]. Our literature search has revealed very few studies that have analyzed the factors conditioning the response to OT and the parents’ attitudes to orthodontic care, and none of those studies has included a control group of non-disabled individuals [13‐15].

The aim of our study was to analyze the motivation and expectations of parents regarding the OT of disabled patients, the social implications, the adverse effects of therapy and the level of satisfaction with treatment outcomes.

The parents of 60 disabled children (DCh) with physical, mental and/or sensory impairment undergoing OT were surveyed on attitudes to OT and the level of satisfaction with outcomes. All treatments were performed between 2010 and 2013 in the Special Needs Unit of the School of Medicine and Dentistry of the University of Santiago de Compostela in Spain. The mean age of patients was 13.8 ± 2.3 years (range, 9–18 years). All patients lived at home or in an institution and no overnight stays in our unit were required. All patients were able to tolerate dental procedures using only behavior modification techniques; a single session of deep sedation or general anesthesia was needed in only 4 DCh patients for long procedures requiring a high degree of collaboration (taking impressions and bracket adhesion). Patients with severe malocclusions requiring jaw surgery were excluded.

The orthodontic diagnosis was established in each patient based on the following variables: anteroposterior malocclusion (Angle’s classification system), transverse malocclusion, and pre-treatment Peer Assessment Rating (PAR) index. The orthodontic treatment outcome was evaluated by using the difference between pre-treatment and post-treatment PAR index scores (absolute value and percentage), and the PAR nomogram (worse or no different, improved, greatly improved).

The medical diagnoses in the study group were Down’s syndrome (13 cases), mental and/or psychomotor deficiency (12 cases), congenital malformations with craniofacial involvement (10 cases), cerebral palsy (7 cases), autistic spectrum disorders (4 cases), sensory deficiencies (4 cases) and other rare congenital disorders (10 cases).

The survey was based on previously validated questionnaires [13‐15], and consisted of 23 questions grouped into 4 sections (Spanish version, see Additional file 1).

To establish a control group, the parents of 60 healthy children (HCh) undergoing OT at the Orthodontic Unit of the same institution and treated by the same orthodontists were also surveyed. HCh were matched with the DCh group for age, sex, anteroposterior malocclusion and pre-treatment PAR index score. All patients (DCh and HCh) were treated with both removable and fixed appliances.

In our experience, OT may take longer to complete in DCh patients than in the general population due to the complexity of the malocclusions, the greater number of appointments required, and occasionally due to the temporary withdrawal of appliances (a consequence of traumatic lesions, gingival thickening, or poor oral hygiene). Motivation is a key factor in achieving good cooperation during OT [13]. In HCh undergoing OT it has been suggested that the level of motivation does not increase during the different phases of treatment and that it is conditioned by the presence of discomfort and by the degree of acceptance of the device; furthermore, parents are often significantly more motivated than their children for OT to be performed [16]. Disabled individuals usually receive continuous daily attention from motivated parents, who are willing to do everything possible to increase their child’s well-being [13]. The DCh parents are often therefore willing to become members of the orthodontic team [7]; this occurred in the present series, in which DCh parents had a significantly higher degree of motivation than HCh parents.

Inadequate oral hygiene can be the greatest obstacle to the success of OT [7, 14]. Atassi et al. [17] in a series of healthy patients undergoing OT, found that 60% of them had poor oral hygiene, confirming the need to develop oral hygiene maintenance programs for application during OT. In the present series, over 80% of HCh parents stated that the level of collaboration in their child’s oral hygiene was low. Waldman et al. [5] considered that the principal limitations to OT in physically and learning disabled patients were their lack of understanding of the need for good oral hygiene and their reduced ability to perform adequate hygiene techniques. However, in the present study, the frequency of toothbrushing before and during OT was similar in the study and control groups.

A high percentage of HCh report feeling less discomfort with removable orthodontic appliances than with fixed ones [18], although greater collaboration was required from patients during the fixed appliance phase [16]. Apart from rare exceptions that require the use of removable appliances in patients with intellectual disability [14], our findings coincided with the majority of authors who have stated that these patients tolerate fixed multibracket appliances better [6].

Becker et al. [14] suggested that the two problems most frequently detected during OT in DCh were the maintenance of adequate oral hygiene and difficulties in monitoring treatment. In our survey, most HCh parents found maintaining oral hygiene stressful; this was less common among the DCh parents. Parents actively involved in the day-to-day care of a child’s well-being are highly motivated when seeking OT [7], which may explain why more than 40% of surveyed DCh parents did not find any phase of OT an overwhelming problem.

In some published series it has been found that over 90% of HCh undergoing OT and their parents were concerned about aesthetic appearance and that this was the main reason for requesting OT [19]. Al-Sarhad et al. [15] concluded that parents of sensory impaired children (blind and deaf) were aware of their child’s dental aesthetic appearance and that this had a determining role in seeking OT. In physical and learning disabled patients, improved facial appearance has also been reported as the most common reason to request OT [13]. In the present series we did not observe statistically significant differences between the percentage of DCh and HCh parents for whom enhancing the facial appearance of their children was important.

Results of surveys conducted in healthy children undergoing OT revealed that both parents and children felt that an aesthetically pleasing result was important for psychosocial well-being [20]. Improved physical appearance and oral function following OT could increase the quality of life of DCh and promote their social acceptance [13]. This could explain the improvement in social relationships of DCh observed in the present series. However, in previous studies, parents have expressed their difficulty in appreciating these improvements, particularly in patients unable to express their feelings [21].

Becker et al. [13] showed that OT in DCh could not only improve the facial appearance but also masticatory function, speech and drooling control. In a survey performed on Swedish parents of DCh, the improvement in chewing and speech and the reduction of dental trauma were considered the principal benefits of OT [21]. In the present study, parents also requested OT for reasons related to orofacial function, as may be appreciated by the remarkable difference observed in speech improvement in DCh compared with HCh.

It has been shown that OT carries an increased risk of oral mucosal lesions in healthy individuals aged between 6 and 18 years, with gingival inflammation, erosion, ulceration and contusion being the most common findings [22]. In some DCh, such as those with Down’s syndrome, oral ulcers can be the most common complication during OT [11]. In the present series, more than half of HCh parents and 60% of DCh parents declared that their children had oral lesions arising from OT. It has been suggested that adequate oral hygiene instructions and the early treatment of oral lesions are important considerations to increase patient motivation and to complete OT successfully [22]. Pain and discomfort during OT also strongly affect treatment satisfaction [23]. As for the disruption of daily functions during OT, Stewart et al. [18] reported that speech and swallowing disorders appeared in patients wearing removable appliances, and that these persisted in some cases even after 3 months. In the present series, over 75% of DCh parents and 85% of HCh parents confirmed that OT did not cause any alteration in everyday oral functions. However, a significantly higher percentage of DCh than HCh controls presented increased salivary secretion and/or nausea during OT.

In a study conducted on healthy adolescents who had received OT, it was found that only 34% were completely satisfied with results, 62% were relatively satisfied and 4% were dissatisfied [24]. These findings contrast with those described by Becker et al. [13] in a series of DCh in which 100% of parents surveyed said they felt satisfied with results, and 11% even said their expectations had been exceeded. In the present series, over 90% of DCh parents were satisfied, and over 40% stated that OT outcomes had exceeded their expectations; 100% of HCh parents stated they were satisfied with the outcome. These findings in both DCh and HCh may be related to other recently suggested factors conditioning satisfaction with OT outcome, such as quality of care and attention [23]. In a series published by Becker et al. [13], 63% of DCh parents noted positive changes in their child’s oral function after OT. In our series, the perception of improvement in daily activities and in the perceived changes in social life was significantly higher in DCh than in HCh. These improvements will lead to greater self-confidence and satisfaction, and the parents of DCh would therefore allow their children to undergo the same treatment in the future, should it be necessary. Similarly, DCh parents surveyed by Becker et al. [13] would recommend OT to other patients and they would repeat the same procedure should the initial circumstances recur.

This study has certain limitations that must be taken into account, as they may potentially affect the results of the survey. The characteristics of the DCh group meant that their parents answered the questionnaire, and their motivation and expectations may have been exaggerated. The degree of patient collaboration is implicit in the inclusion criteria, as OT is indicated primarily in cooperative patients. The PAR index score had an impact on certain responses, particularly those relating to the degree of satisfaction and appreciation of improvement; as very severe malocclusions, such as those requiring surgical management, were excluded, we do not know if the replies would have been different in patients with higher PAR index scores. Finally, some functional variables, such as the improvement in patient daily activities, were evaluated on a qualitative basis and would benefit from a more objective assessment.

The results of this study confirm that parents of DCh undergoing OT show a high level of motivation and that they are willing to collaborate in oral hygiene procedures. OT can produce a considerable improvement in quality of life, social relationships and oral function in DCh. The perceived level of satisfaction is often very high and parents of these children stated that they would repeat OT, if needed, in the future.