Internet discussion forums, an information and support resource for orthognathic patients

Introduction

Orthognathic patients appear to be increasingly using the Internet to obtain information about their proposed treatment. The aim of this study was to investigate the information that orthognathic patients share and discuss with peers away from the clinical environment to improve the provision of information for orthognathic patients.

Methods

Posts made by persons in a large publicly accessible online orthognathic discussion forum were analyzed; 1912 randomly selected forum posts were evaluated using a qualitative analysis technique known as “thematic analysis” that involves coding the posts and collating them into meaningful and distinct themes.

Results

The main themes identified were (1) reasons for undergoing orthognathic treatment, (2) presurgery and postsurgery treatment stages including orthodontics, (3) surgery including postsurgical complications and difficulties, (4) expected and actual end of treatment changes, and (5) seeking and sharing information.

Conclusions

This study demonstrates that orthognathic patients look to the Internet to supplement information regarding their proposed treatment. This may suggest a possible gap in the provision of information by health care professionals. However, it is clear that patients use Internet forums to seek additional information, support, and reassurance from peers undergoing similar treatment. Therefore, there is a need for clinicians to ensure that patients have access and are guided to appropriate and relevant Internet resources.

Highlights

  • We focused on information shared by patients on the Internet about orthognathic treatment.

  • We used thematic analysis to look at posts discussing all phases of orthognathic treatment.

  • Similar research has focused on the surgical phase of treatment only.

  • Analysis confirms the Internet is used as a health care resource and enables access to peer support.

  • Clinicians need to ensure that patients have access to appropriate and relevant Internet resources.

Provision of information to patients is an essential aspect of patient care in all clinical settings. Research has shown that orthognathic patients are more likely to be satisfied when they receive more information about discomfort and surgical risks and when they were forewarned about negative events such as pain, numbness, and swelling.

A review of the literature suggests that most previous studies in the field of orthognathic surgery have focused on information about the surgical aspects of the treatment pathway and not enough on the whole orthognathic treatment pathway, especially the orthodontic phases before and after surgery.

To increase posttreatment satisfaction, it is essential to understand what information patients want about the entire orthognathic treatment journey. Focusing on what information patients are seeking and discussing away from the clinical environment is a useful avenue to understand this. It is clear that with the increase in access to the Internet, patients are now using it to obtain health care-related information and also to discuss aspects of their treatment with peers. This is increasingly the case for orthognathic patients, who often tell clinicians that they have found some information about treatment on a Web site. For clinicians, this poses some important questions. What information do patients discuss with peers? Why do they choose to discuss this in Internet forums? What is the quality of information being shared on the Internet?

This issue of the validity of the information available on the Internet is a particular concern for many clinicians. In a study assessing the quality of information available to orthognathic patients on the Internet, Aldairy et al found that only 6 of the 25 Web sites in the United Kingdom provide medical information of such a quality that could be recommended to orthognathic patients. Internet discussion forums allow patients to interact with their peers and offer and seek advice, support, and information. However, the information shared is often subjective and may not be reliable.

To gain a greater understanding of what patients are discussing about orthognathic surgery, Sousa and Turrini and do Rego Barros et al analyzed comments from blogs and virtual communities in the Portuguese language. However, their analyses were limited to those relating to expectations or concerns regarding orthognathic surgery and did not include the entire orthognathic treatment journey. In addition, as acknowledged by do Rego Barros et al, the research only focused on virtual communities in the Portuguese language, and the authors recommended analyses of Internet users in other countries. Sousa and Turrini found that patients posted information that they considered to be essential but that professions considered too basic to be of concern. This is an important consideration; therefore, it is vital to understand what information patients require, rather than what health care professionals think they should know.

The use of qualitative research is increasing in health care and is a useful research method to gain an in-depth understanding of patients’ thoughts and experiences. Analyzing discussion forums has been recommended as a qualitative research methodology because it can make the users’ beliefs and concerns apparent in comparison with more closed-ended quantitative research methodologies. Since the researcher is not present during data collection and the conversations analyzed occur naturally, this prevents any bias by the researcher.

There has been limited research published to date investigating patients’ perceptions of their information needs concerning both the orthodontic and the surgical phases of orthognathic treatment. Analyzing the questions patients ask and the information they share will provide a valuable insight into what patients want to know so that clinicians can manage expectations and improve satisfaction. This research was conducted to address this gap in the literature. In our qualitative study, we aimed to gain insight into the topics discussed by orthognathic patients regarding the whole treatment process among fellow patients on an internationally used online orthognathic discussion forum to improve the provision of information for these patients throughout their treatment pathway.

Material and methods

The Google Internet search engine was used to search for discussion forums with the terms “discussion forum,” “orthognathic surgery,” “surgical orthodontics,” and “jaw surgery.” An orthognathic discussion forum based in the United States was selected for analysis of posts because it was identified as one of the most active forums in use. This was reflected by the number of messages posted (N = 18,846), and this forum is used by an international audience. The discussion forum creator and moderator consented to our analysis of the posts on the forum.

Since the discussion forum contained nearly 19,000 posted comments, posts selected for analysis were randomly chosen using a random number generator. This process was repeated until data saturation was obtained and no new themes were identified. Posts were analyzed with thematic analysis based on the guidelines of Braun and Clark. Thematic analysis involved reading all the posts repeatedly and marking ideas and notes in relation to orthognathic treatment. Posts were grouped together into topics and then reviewed and refined until meaningful and distinct main themes and subthemes were developed. A selection of quotes has been provided in the Results to illustrate the relevant themes.

Thematic analysis has been previously used to analyze comments on computer-mediated support groups by other fields in medicine, such as investigating social support online for people living with irritable bowel syndrome.

Results

We analyzed 1912 randomly selected posts. Most of the people who posted on the forum either were considering treatment or were on the treatment pathway, sharing their concerns and experiences so far. Also, some who posted messages had completed treatment and were offering informational and emotional support to those who were considering or undergoing treatment. Five major themes, each with subthemes, were identified from the data and are discussed below.

Reasons for undergoing orthognathic treatment

A wide range of reasons have been identified to explain why persons chose to undergo orthognathic treatment. The 2 main reasons are considered below.

Difficulties with function was a reason that some mentioned; they were concerned with how their malocclusion affected them on a day-to-day basis. The most common difficulties referred to eating, speaking, and breathing. These can be key reasons for seeking advice or treatment.

“I was sick and tired of not being able to enjoy food properly.”

“I’m constantly pushing my lower jaw forward in order to speak properly without my lower lip being caught under my upper teeth.”

“I have a problem with my airway, makes it difficult to breathe at night.”

Unhappiness with appearance was another reason expressed; dental or facial appearance gave some patients a reason to undergo treatment. They described being self-conscious of their own appearance but also recounted experiences of others commenting on their appearance.

“I hardly ever show my teeth whilst smiling, can’t wait for the day I feel confident enough to smile properly.”

“I became really insecure about my profile as my lower jaw just kept growing longer and people kept pointing it out.”

Presurgery and postsurgery treatment stages including orthodontics

Several messages had been posted asking questions regarding specific stages of treatment. Many people wanted to know how long it would be before they could have the surgery and what wearing braces entails. The treatment stages are discussed in turn.

The posts demonstrate that those who are considering treatment have many questions regarding what to expect at their initial consultation. Responses from patients who have attended such appointments focused on the importance of this initial consultation and the information that is discussed.

“I feel it’s very important for someone in your situation to actually go ahead and hear out the surgeon, express your concerns and your smile/jaw problems to him/her and only after having all the knowledge about your choices should you make a decision.”

Removal of wisdom teeth is another concern. Once a person decides to begin orthognathic treatment, depending on the type of surgery planned, the mandibular third molars might need to be extracted. The posts showed that some people have heard or read that removal of wisdom teeth is required as a part of the orthognathic treatment process, either from posts on the discussion forum or when attending their treatment appointments. Also, some patients mentioned that their wisdom teeth were removed at different stages of their treatment.

“I’ve heard about people having surgery and wisdom tooth removed at the same time.”

“I did not do the wisdom tooth surgery.”

This can potentially cause confusion, especially for those who do not require their third molars to be removed, since they would not have received any information regarding this. Reassuringly, as the following quote on the forum illustrates, patients farther along in treatment can inform those in the earlier stages why wisdom tooth removal is often required and when this may be carried out.

“If you are having lower jaw surgery, then wisdom teeth usually have to come out before because that is right in the area where the surgeon makes the cut through your mandible. Usually people have them out months before their jaw surgery. My surgeon said they usually like to wait 5 to 6 months after wisdom teeth come out before they do jaw surgery so they give the socket and bone a chance to heal.”

When patients commence treatment, they usually have many questions regarding the orthodontic treatment: in particular, when fixed orthodontic appliances can be placed and how long the presurgical orthodontic phase lasts before surgery is planned.

The posts demonstrate that many people are made aware as teenagers that they may require orthognathic treatment to address their facial or dental concerns. However, since the surgical phase is usually not carried out until the patient has completed growth, often this means waiting before the orthodontic appliances can be placed.

“My ortho refused to let me have my braces done until I reached the age of 18, because braces come with jaw surgery.”

Several persons posted regarding the duration of the presurgery orthodontic phase. It is evident that many have been informed by their treating clinician that they would require orthodontic appliances for approximately 18 months before surgery. An interesting post was the following: “I was told 18 months too but I get the feeling they just say that to everyone!” This illustrates that patients want to know how long the presurgical orthodontics will take and are often dissatisfied with a broad timeline for the various treatment stages. Many mentioned that they felt that the orthodontic preparation for surgery was longer than they initially thought.

Presurgical orthodontic treatment is essential to prepare the dentition for orthognathic surgery. Often the orthodontic movements required can appear to worsen the occlusion. The message below clearly demonstrates how patients farther along in the treatment process can help inform those in the earlier stages of the aims of presurgical orthodontics.

“I knew that my bite was going to get worse when I was in braces. It actually seems to change each month after adjustment. Just remember that the orthodontist is putting your teeth where they need to be AFTER surgery, and your bite may seem weird/worse because of that.”

After patients have their surgery, orthodontic treatment is continued to help the occlusion to settle. Often patients wear elastics in their presurgical phase of orthodontics, but for some patients this is something new after surgery that they may not fully understand, and they can feel uncomfortable.

“What are the elastics for and what do I do if they break.”

Orthodontic retention is an essential part of orthognathic treatment. Patients often underestimate the importance of this phase of treatment, thinking that once the surgery and orthodontics are finished, the treatment is complete. However, retainers must be worn to ensure that the teeth are maintained in their final positions. Patients often resent the need for retainers, and supportive comments on the forum can help them come to terms with this aspect of the treatment.

“Wear retainers 24/7 for the next 6 months!”

“The retainer isn’t too bad, just a clear plastic guard that slots on and off really easy.”

Surgery including postsurgical complications and difficulties

Patients who have completed treatment posted many messages to offer practical advice and support for those who had recently undergone surgery and tips for those due to have surgery. They clearly stressed the importance of being prepared. The issues most often discussed regarding the immediately postsurgical difficulties are considered below.

The messages posted clearly expressed that practical support from family and friends is extremely important during the whole treatment process, and even more so immediately after surgery. In addition to recovering from a general anesthetic, surgery to the facial region causes swelling, pain, and discomfort, and the patient also must contend with changes to his or her facial appearance. Therefore, as the posts demonstrate, those who have undergone surgery strongly suggest to those awaiting surgery to arrange for someone to be with them immediately after surgery. This information should also be given by their clinicians.

“Make sure you’ve got people around to make things easier.”

“You need a person there for the first week or 2 for moral support.”

Many persons worry about the immediate side effects of having surgery, especially how long the swelling lasts and what difficulties it causes. In many posts, patients expressed the difficulties that facial swelling causes—eg, finding it difficult to bring their lips together and produce facial expressions—but this progressively improves with time.

“For most it’s not painful, it’s just the swelling that makes it uncomfortable.”

“I really want the swelling to stop since it is very uncomfortable. It’s very difficult to swallow.”

Most messages regarding swelling related to methods to reduce it. Those who had undergone surgery posted recommendations to sleep as elevated as possible, use ice packs, and take anti-inflammatory medication.

“Sleep elevated if you lay down or on your side, your face is able to swell up like a balloon.”

“Does applying heat help? Or should I stick to ice? And how many times a day should I ice?”

Patients are often concerned with the severity of pain to expect immediately after surgery. Interestingly, those who have had surgery often describe the pain as less severe than expected. Often, it is the swelling that causes the discomfort.

“When I woke up I had some discomfort, but never any pain.”

“The aching didn’t really last long to be honest only a week or so. Then it was just a case of waiting for the swelling to go down.”

Most people who have undergone surgery often experience some form of numbness in the short or long term. Patients should be warned by their treating clinicians of permanent numbness and various forms of altered sensation after surgery.

People posted messages asking others whether their sensations are normal and how long they will last. The type of altered sensation can change during recovery from complete numbness to tingling or burning; most patients regain complete feeling. This period of altered sensation can last longer than some expect, and in some cases complete feeling may not ever be regained.

“What is your experience in chin sensation return? Does it suddenly come back or was it gradual? How long until it came back in your case?”

“Now all I suffer from is a tickling feeling in my nose in the cold. The numbness I was worried about has faded lots, more just pins and needles.”

Immediately after surgery, several patients posted messages mentioning difficulty breathing because their nose was blocked. They asked whether others have also experienced difficulty breathing and what advice they could give to help.

“I can’t breathe through my nose at all. It’s all clotted with blood. Are you having any trouble breathing?”

“Just boiled some water and added Vicks, covered my face in a huge bowl, cleared out my nose, it was so good.”

Eating and drinking immediately after surgery are clearly concerns. Many patients due to have surgery and those who have recently had surgery posted messages mentioning concerns about possible weight loss and asking for suggestions from others about what can be done to maintain their weight.

It is noteworthy that many who have had surgery posted messages regarding their struggles with eating and drinking, along with suggestions to help those awaiting surgery. A recurring recommendation is the importance of being prepared. A few posted lists of things to buy in advance: eg, a blender and soft foods.

“Eating is definitely a mammoth task, much more difficult than I expected.”

“I want to get as much protein and carbs in my diet as possible.”

“Get all your food in beforehand.”

Frequently, patients mentioned experiencing difficulty sleeping after surgery because of discomfort. Those who have had surgery were happy to help with suggestions such as using lots of pillows or certain shaped pillows to allow them to sleep in a slightly upright position, which they found more comfortable and helped to reduce the swelling.

“Do you have any curved pillows that will hold your head up? I think it’s going to help a lot.”

When patients are informed of their surgery date, they are advised by their clinicians to arrange for time off from their normal routine such as work or college to recover. The length of recovery varies between patients; therefore, an estimated time frame should be given.

Many people posted messages asking how long complete recovery takes. Those who have undergone surgery replied, with most stating 4 to 6 weeks off from work to recover.

“I went back to work after 4 weeks and by then even though I still had swelling it wasn’t so bad.”

“I had 6 weeks off work in total which is what is recommended.”

After surgery, it is essential for patients to maintain excellent oral hygiene to aid healing. Immediately postsurgery, it can be difficult and at times painful to brush the teeth because of the swelling and discomfort. However, those who have undergone surgery can from their own experience recommend aids and techniques that help with maintaining oral hygiene.

“I was brushing my teeth from day one. Baby toothbrush is the perfect size and texture for postsurgery brushing.”

“Rinsing with salt water after surgery helped.”

Expected and actual end of treatment changes

The aim of orthognathic treatment is to correct the malocclusion and optimize facial esthetics. Those awaiting surgery frequently post messages relating to their expectations of surgery and completing treatment. Also, those who have had surgery posted messages regarding the changes to their appearance and function.

People who decide to undergo treatment are generally excited about the changes to their dentition, appearance, and self-confidence. As discussed previously, they have a variety of concerns. Consequently, a person’s expectations of treatment are often based on having these concerns addressed.

Since the surgery addresses the patient’s skeletal discrepancy and therefore changes his or her facial appearance, this can be worrying. This is especially true for those who are concerned only about their malocclusion and not about their facial appearance.

“Right now I’m extremely curious and anxious to know what I’ll look like after surgery. I can’t seem to picture myself with a different jaw.”

Those who underwent the surgical phase of treatment posted messages regarding changes to their facial appearance from the first day after surgery to weeks, months, and years after surgery.

For those who had surgery, the changes to their facial appearance can be overwhelming, even though to some extent anticipated. Immediately postsurgery, patients have facial swelling and are told that it can take months to resolve before the final results can be seen. Patients do require time to adjust to their facial changes; some need more time than others.

“I’m so glad my bottom jaw stopped sticking out.”

“It took about a year for me to really see the final changes and feel like my face was back to normal.”

Several patients who had orthognathic surgery mentioned that their main reason for undergoing treatment was to improve function. Frequently, the functional benefits of an improved bite can be overlooked by more noticeable facial changes.

“I mainly did it to correct my bite. I couldn’t eat properly.”

Seeking and sharing information

The posts demonstrate how a discussion forum provides a platform for people to exchange valuable information and emotional encouragement. This is shown well by those who have completed treatment posting practical advice and support for those who are in the earlier treatment stages to allow others to benefit from their experiences. Also, persons asking questions to those who have further experience of the treatment process are aiming for reassurance after discussions with their clinicians or want to benefit from others’ first-hand experience of the treatment journey.

”Keep us updated on your progress good luck with the rest of recovery!”

“I just joined this site and it’s awesome knowing there are others going through the same thing I’m going through right now.”

“Recovery has been challenging but I have been able to handle it because of all that I learnt on this site.”

Most people who have undergone treatment post messages of support and advice for those in treatment, especially for those who have just had surgery and are finding recovery challenging. Also, many posted messages expressing their appreciation to others for their support and advice regarding the various treatment stages.

“To all of you out there that are thinking about this surgery or you are in your first days of recovery, hang on in there, it’s totally worth it.”

“Thanks for all the support, it really makes a difference and helps me remain positive on my road to recovery.”

Interestingly, some people posted messages seeking advice on more technical aspects of treatment: eg, asking others whether they believe they require orthognathic intervention. Reassuringly, those who responded strongly advised potential patients to seek professional advice.

“When you have your appointment with the surgeon he’ll be able to answer all your questions, and you’ll feel relieved after you have a professional answer.”

“Your orthodontist/surgeon would be able to tell you best if you need surgery.”

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Apr 6, 2017 | Posted by in Orthodontics | Comments Off on Internet discussion forums, an information and support resource for orthognathic patients
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