This qualitative study raised the question of adequate patient information in the course of orthodontic-orthognathic surgery treatment. Does ‘one size fit all’ regarding patient information? According to relevant literature and our study results, the answer should be ‘no’. Interestingly, patients talked about their information needs with distinction regarding the specific treatment phase. This aspect did not occur throughout the focus-group of professionals, i.e. orthodontists and surgeons. Although all parties agreed, that patients should have a broad overview prior to treatment start and should receive information “in a nutshell”, only patients themselves claimed the highest demand for professional information before orthognathic surgery and during the stay at the hospital. Within our focus-group, professionals seemed to think that they know what their patients’ information needs were, possibly due to long-lasting experience. Yet, they stressed the importance of individualized information transfer for each patient. Interestingly, some stated, that they „test their patients“, whether they want a lot of information or only the least necessary prior to treatment start, but it remained unclear how they did so. Over time, professionals might develop strategies during everyday orthognathic routine to find out what kind of patient they are dealing with – scared or tough; with high, maybe unrealistic expectations or potentially easy to please – but it is crucial to question those strategies once in a while, alter them, if needed, and ask for psychological assistance when trying to properly assess patient’s psychological traits [21, 24, 25]. As we are usually specialized dentists, we might lack detailed communicative knowledge, which is especially important when dealing with orthognathic patients. Reflecting the own approach to deliver information is beneficial for our patients as well as for their treatments in specific. Catt et al. investigated the relation between oral health-related quality of life and the quality of communication perceived by orthognathic surgery patients and came to the conclusion, that the better informed patients thought they had been after treatment, the higher was their oral health-related quality of life [26]. In line with our results, patients wanted to be involved in the decision-making process prior to treatment. Patients from our study frequently reported that they found openness and empathy to be crucial for doctor-patient-communication. Although there are still only few studies that look at the correlation between quality of communication and satisfaction and/or oral health-related quality of life in the field of orthognathic surgery, it seems obvious, that ‘being prepared for what comes next’ or ‘being prepared for surgery itself’ is highly important for combined orthodontic-orthognathic patients, especially because this treatment approach mostly includes an elective surgery. Cunningham et al. highlighted the aspect of open doctor-patient-communication throughout treatment. Patients should be allowed and even encouraged to ask questions at any point of treatment – or prior to it – and sufficient patient management in orthognathic surgery should include a patient-centered way of communication [10].
Verbal and empathetic doctor-patient-communication was most important for our patients, which was in line with results from relevant research. The factor time seemed to play a large role. Some patients wished that medical staff would have taken more time to talk. This should be an alarming signal for an interdisciplinary team. Having these criticisms in mind, every medical staff member of a combined orthodontic-orthognathic team should question their everyday routine. Patient-centered communication, as mentioned above, is a major key to a successful treatment and overall patient satisfaction [10].
Furthermore, written information about combined orthodontic-orthognathic treatment and the potential side-effects is generally a common tool for information transfer [27,28,29,30], especially prior to treatment uptake. Patients of our study reported that they found written information mostly beneficial. Written informational material for patients should be generally designed evidence based [30,31,32,33]. In addition to that, some researchers declared supplementary visual tools to be additionally helpful in order to inform orthodontic patients [13, 14]. Another way for obtaining information is using the internet. Professionals who were questioned in the course of this study openly addressed their concerns regarding this source of information. On the one hand, some found it to be fine and up-to-date. On the other hand, they questioned the use and clinical significance of such information due to potentially flawed and unfiltered data of personal experiences. Yet, they did not offer a specific way to guide their patients through internet-based information. Social media platforms like YouTube, Twitter and Instagram frequently provide specific and potentially biased information [6, 15, 16, 34]. Patients might be overwhelmed and even frightened by such unfiltered information with a potential to raise unrealistic expectations [35]. Although some patients of our study seemed to reflect about these circumstances, some talked about the chance to get independent information by searching the internet. This might be a fallacy, if doctors do not guide patients through internet-based information properly and direct them to validated websites [36]. Interestingly, while professionals agreed on their general experience, that nearly all patients who they had met in recent past and who had been in need for orthognathic surgery searched the internet for information prior to their first consultation at the clinic, patients themselves seemed to think differently and did not deliberately mention this potential source of information. This is in line with previous results [27], but then again, international researchers also stated, that the internet is a useful tool for orthognathic patients [6, 28, 34, 37]. In the context of our study, one might regard this as a phenomenon which might occur when conducting interviews: The interviewee wants to represent him−/herself in a good light and therefore occasionally modifies statements according to his−/her belief of what the interviewer might seek to hear (social desirability, response bias, acquiescence bias). Because this phenomenon is inherent to some qualitative research methods, we should account for it, but not rank this supposedly bias high.
Some patients mentioned, that close relatives had been essential for them throughout treatment. They felt supported by their family, especially during the stay at the hospital. Within the conducted focus-group, professionals confirmed that patients’ families were frequently present at the hospital, but seemed to have difficulties to deal with the situation properly. Furthermore, patients reported that they had wished for more direct communication from doctor to family member as for instance when side-effects like facial swelling were disconcerting for both patients and family alike. Therefore, close relatives might better be involved in discussions from the beginning. One must keep in mind, that many orthognathic patients are young adults at the age of 18+ years old and might not feel completely grown up and independent yet. On the other hand, their parents might be frightened because they still see their child as such and not an adult. The important factor of interpersonal support has been confirmed by studies which showed that orthodontic-orthognathic surgery patients had a significantly higher number of contacts in their social support network [38]. Social support proofed to be not only important immediately after surgery, but also played a major role regarding general patient satisfaction [10, 39]. The implementation of specific family−/ parent-centered information therefore seems highly necessary.
In our study, some patients mentioned the possibility of being scared away by too much and detailed information. They stated, that if patients were not ‘strong enough’ they could not deal with such information. The individual need for information and the question of how much information might be too much information to handle is closely associated with the patients’ expectations of treatment. Cunningham et al. found out that the psychological profiles of patients in need for combined orthodontic-orthognathic surgery differed from a non-affected control group [38]. Ryan et al. made efforts to identify a specific characteristics of orthognathic patients, their expectations and satisfaction. They highlighted the need for pre-treatment psychological screening of patients, together with mental health experts, if needed. As some patients might have unrealistic expectations regarding physical and non-physical changes, professionals must be alert during patients’ first consultations [9]. Mental disorders like the body dysmorphic disorder, where a minor or even imagined defect causes significantly distress [40], have to be thought of when patients report about high expectations, especially regarding non-physical changes [41]. The prevalence of such mental disorders among orthognathic patients has not extensively been described so far, but researchers like Veale et al. estimated it to be 11.2% in the field of orthognathic surgery and 5.2% in orthodontics and cosmetic dentistry [42]. This assumingly high prevalence should be a warning sign for orthodontists as well as for maxillofacial surgeons as they do not regularly have the psychological experience in order to detect and/or treat conspicuous patients. Screening tools like the Dysmorphic Concern Questionnaire might help in this context [43, 44]. Although researchers already reported, that orthodontists might be afraid of referring patients to a mental health professional [24], patients themselves did not seem to be intimidated or have negative feelings about such a referral [21, 45]. Thus, as mentioned above, the need for psychological support within the interdisciplinary team of professionals should not be ignored, but rather addressed [46].
Despite the advantages of the qualitative methods used for this research project, some methodological issues should be raised. A sample size of 16 seems rather small compared to quantitative studies. Yet, as mentioned above, one has to keep in mind, that qualitative studies intentionally and conceptually don’t aim for a large sample size and a statistical numeric generalization, but rather a conceptual generalization [22, 47, 48]. The concept of reflexivity by the researcher is crucial in order to diminish blurring interviewer bias [49]. In this study, the interviewer – and moderator within the focus-group – had been trained and chosen by an interdisciplinary panel of experts, so that potential biasing factors should be regarded as neglectable. Nevertheless, it lies in the very nature of qualitative research that influential personal factors such as gender, age, ethnicity and profession, cannot be avoided. Furthermore, one specific limitation of this study might be seen in the regional limitation. However, discussing our results in the light of relevant international literature showed, that specific categories or themes were applicable across different regions and nations. This, again, highlights the strengths of qualitative methods searching for conceptual generalization. According to internationally reported unmet needs and expectations of orthognathic patients, an individual-centered way to treat and inform this clientele might still not be fully incorporated during everyday routine and should still be regarded as our main task for the future [2, 6, 10, 34].