Contributing factors for a satisfying orofacial pain patient journey: a mixed-methods study

2.1 Study design

A concurrent triangulation mixed methods design was used [16]. For the primary research aim, quantitative (physical journey) and qualitative (emotional journey) data were collected. Because a qualitative design allows for a deeper understanding of emotions and experiences, a mixed-methods study is most effective for a complete patient journey mapping. For the secondary research question, only quantitative data were used.

2.2 Study population

Patients were recruited from the Orofacial Pain and Dysfunction (OPD) clinic of ACTA. In this clinic, patients with orofacial pain or dysfunction complaints, bruxism, or sleep apnea are managed by a multidisciplinary team consisting of dentists specialized, or in training to be specialized, in orofacial pain, orofacial physiotherapists, and a psychologist. The dentists specialized in orofacial pain have completed a three-year fulltime postgraduate program, which is a combination of a theoretical and clinical program to deepen their knowledge and experience with the various types of patients with orofacial pain. Before the intake visit, all patients fill out an online questionnaire which includes the Symptom Questionnaire of the Diagnostic Criteria for TMD (DC/TMD) [17], as well additional questionnaires regarding their complaints, co-morbid conditions such as headache [18], sleep, and psychosocial factors. During the intake, a standardized examination is conducted by a trained dentist according to the DC/TMD protocol [17].

Patients were included in the study if they (1) reported orofacial pain complaints; (2) were minimally 18 years old; (3) were able to communicate in Dutch; and (4) signed an informed consent form. There were no exclusion criteria based on specific types of orofacial pain. Patients were invited by one of the healthcare providers of the OPD clinic between March 2022 and June 2023. A random subgroup of participants was invited to participate in an in-depth interview. From the list of included participants, every fifth person was invited to participate in the interviews. If one person declined, the next person was invited. Recruitment for the interviews continued until saturation was achieved, which was considered to be the case when no new information was identified from the last two interviews. A priori, this was expected to occur after six to twelve interviews [19].

2.3 Quantitative data collection: characteristics and outcome measures

The following participant characteristics were extracted from the participants’ medical files: age, gender, diagnosis, orofacial pain intensity, interference, and duration. The orofacial pain intensity and interference were extracted from the Graded Chronic Pain Scale, which resulted in a Characteristic Pain Intensity Score (0–100) and an interference score (0–100) [20]. Additionally, information regarding headache, oral behaviors, somatic symptoms, depression, anxiety, stress, and optimism were also extracted from the medical files.

All participants received an additional survey specifically designed for this study, which included: (1) questions regarding their orofacial pain complaints (what are the complaints, duration, where did they seek information about the complaints); (2) questions regarding the number of, and experience with, healthcare practitioners visited prior to their visit at the OPD clinic for their orofacial pain complaints; (3) the Multidimensional Health Locus of Control scale (MHLCS) [21]; (4) the Multidimensional Pain Readiness to Change Questionnaire (MPRCQ) [22]; (5) the Pain Catastrophizing Scale (PCS) [23]; (6) the brief Illness Perception Questionnaire (IPQ) [24]; and (7) the Tampa Scale for Kinesiophobia for TMD (TSK-TMD) [25]. The survey was self-administered by the participants in their home environment. The Dutch versions of the MHLCS, MPRCQ, PCS and IPQ are downloadable through the website www.meetinstrumentenzorg.nl.

2.4 Qualitative data collection: interviews

Semi-structured interviews were performed with participants using a pre-defined topic guide (Supplementary Table 1), asking in-depth questions about the answers to the survey they filled out regarding their experience with health care providers. The questions aimed to identify the “why” and the “why continue” behind seeking help from different specialists, as well as their personal experience of their emotional journey.

The participants were interviewed by one researcher (HvdM) and the interviews were analyzed by two researchers independently (HvdM and AvdW). Two other researchers (AR and CV) had an advisory role regarding the topic guides and analysis. HvdM is an orofacial physiotherapist at the OPD clinic and knew some of the participants personally. The interviews were held either at the OPD clinic or online in an environment where the patient was comfortable and not disturbed. The interviews were audio- and videorecorded, transcribed verbatim, and imported in Atlas.ti version 23.0 (ATLAS.ti Scientific Software Development GmbH, Berlin, BE, Germany) for further analysis.

2.5 Data analysis

Descriptive statistics were used to describe the participants’ characteristics and outcome measures. The summary figures were created with the online program Canva (www.canva.com).

3.1 Participants’ characteristics

During the period of March 2022 to June 2023, a total of 595 new patients were seen at the OPD clinic. Of these, 216 patients did not meet the inclusion criteria, 140 patients were not informed about the study and 35 did not consent to participation. Thus, 204 patients agreed to participate and signed the informed consent form. Of these, 102 completed the additional questionnaire and were therefore included in the data analysis. Descriptives for the included participants are depicted in Table 1. For the interviews, 25 participants were invited, of which 10 were interviewed after additional consent was signed.

The age of the included participants (N = 102) ranged from 18 to 77, with a mean of 46 years and standard deviation (SD) of 15.9. The majority (84.3%) was female, and myalgia was the most common OFP diagnosis (66.7%), followed by arthralgia (31.4%). Almost two-thirds of the participants also experienced headaches (65.7%). Tension-type headache (TTH) was the most common type of headache (52.9%), followed by migraine (20.6%), as based on the Headache Screening Questionnaire [18]. Lastly, headache attributed to TMD, as diagnosed with the DC/TMD, was present in 19.6% of the people with headaches [17]. The subgroup of participants who was interviewed (N = 10) was mostly representative of the total population, as their mean age was 49 years and 60% were female.

3.2 Primary aim: description of physical patient journey: quantitative results

For most patients, the complaints started with pain in the facial region (64.7%) and/or head (49.0%). Other complaints at the start of the patient journey were joint sounds (37.3%), limited mouth opening (33.3%), teeth wear (18.6%), and/or sleep problems (2.9%). The patients reported that they had gathered information about their complaints online (27.5%), from family or friends (6.9%), or directly from a healthcare provider (60.8%). The healthcare provider that was most frequently visited for information was the general dentist (19.6%), followed by the general medical physician (15.7%) and (medical) specialists (15.7%).

Participants visited between 1 and 9 healthcare providers for their complaints, with an average of 2.7 healthcare providers before their visit to the OPD clinic. Overall, a total of 39 participants (38.2%) indicated that they were satisfied with their patient journey (score 4 satisfied or 5 extremely satisfied). Post-hoc analysis using a Pearson correlation test showed a small but significant negative association between the number of healthcare providers visited and patient satisfaction (r = −0.264, p = 0.007). A post-hoc Spearman’s test also showed a small but significant association between the number of healthcare providers visited and the duration of the complaints (r = 0.230, p = 0.040).

The healthcare provider visited first was most frequently a general dentist (49.0%), followed by an orofacial physiotherapist (16.7%). Of the 58 participants who visited a second healthcare provider and the 42 participants who visited a third, the general dentist, dentist specialized in orofacial pain, and orofacial physiotherapist were most frequently visited. Fig. 1 depicts the beginning of the patient journey as a graphical summary. For details of the healthcare providers visited, see Supplementary Table 2.

Fig. 1.Graphical summary of the beginning of the physical and emotional patient journey of patients with orofacial pain. The five steps of the beginning of the patient journey are shown: complaints, seeking help, top 5 first healthcare providers visited, experiences with the first healthcare provider and reasons to continue seeking care. TMJ: temporomandibular joint; OFP: orofacial pain.

3.3 Primary aim: description of physical patient journey: qualitative results

The analysis of the first nine interviews resulted in 13 themes, which are all connected to the patient journey experience. Fig. 2 depicts the schematic overview of the patient journey, where the identified themes can be divided into factors contributing to a positive patient journey, factors contributing to a negative patient journey, and perspective on multidisciplinary approach.

Fig. 2.Overview of themes identified related to the patient journey experience based on the qualitative analysis. The patient journey starts with the complaints (blue), and can face factors that contribute to a positive patient journey (green) or factors that are perceived as barriers or negative aspects from the patient journey (red). There is also a central factor related to the experience of a multidisciplinary approach for orofacial pain (yellow).

Patients reported that pain and/or trouble in daily functioning usually were the start of the complaints, which caused them to seek help with a healthcare professional. Patients wanted to understand their complaints (what is it, and how can this be resolved?) and receive help to decrease these complaints as quickly as possible.

3.4 Primary aim: description of the emotional patient journey: quantitative results

Interestingly, more than half of the patients had a positive experience with the visited healthcare providers, regardless of how many healthcare providers they had visited. However, the majority did not have a satisfactory result throughout their patient journey for the different healthcare providers visited (61.9%–81.4%), or the visited healthcare provider was unable to help the patient (45.0%–57.1%), resulting in visiting another healthcare professional. Another motivation to continue seeking help was that the healthcare provider advised the patient to seek further help (35.0%–57.1%). In some cases, patients continued to seek help from another healthcare provider due to the lack of a personal connection with the healthcare provider (15.0%–57.1%).

3.5 Primary aim: description of the emotional patient journey: qualitative results

Even though patients stated they would like to be helped close to home in private clinics instead of specialized clinics, they felt it often was not an option because the expertise was not available. Specialized clinics with a multidisciplinary approach are needed in complex orofacial pain complaints, as there is a team of experts available to help the patient. “I thought that it was very nice to talk to all professionals during the intake. I had a clear need for help, and the professionals all looked at it from their own expertise, and then they come to you with some advice.” (Pt04)

3.6 Secondary aim: factors contributing to complete patient journey: quantitative results

The number of healthcare providers visited during the patient journey showed an association with readiness to change (r = 0.247; p = 0.012) and illness perception (r = 0.233; p = 0.018) in the single regression analyses. A multiple regression analysis was performed, and both readiness to change and illness perception were retained in the model as significant variables (Table 2).

Patient satisfaction of the patient journey was associated with internal locus of control (r = −0.212; p = 0.032) and readiness to change (r = −0.211; p = 0.033) in the single regression analysis. The other personal factors (external- and chance-related locus of control, illness perception, catastrophizing and kinesiophobia) did not have an association with patient satisfaction. Using a forward approach, only internal locus of control remained in the model (r = −0.212; p = 0.032) (Table 2).

3.7 Secondary aim: factors contributing to complete patient journey: qualitative results

4.1 Triangulation of results: healthcare providers visited

The patient journey of patients with orofacial pain is complex due to different factors. One of the hypotheses was that personal factors would play a role in the journey, for example that highly motivated people would find their way to a specialized center more quickly. One of the personal factors that had an association with the number of healthcare providers visited was indeed readiness to change, which is related to motivation [29]. The other identified personal factor related to the number of healthcare providers visited was illness perception. Patients with a distorted illness perception were more likely to see more healthcare providers, which may be because illness perception may influence treatment outcomes and satisfaction with treatment [37]. When patients are not satisfied, they are more likely to visit another healthcare provider.

The qualitative analysis from the current study showed that patients are often not very satisfied with the professional communication of the visited healthcare providers. Furthermore, even though there was a significant association between the number of healthcare providers visited and patient satisfaction, this association was small. Still, almost half of the patients who had visited relatively few healthcare providers (three or less) were not satisfied with their patient journey. This indicates that other factors are more important for patient satisfaction than the number of healthcare providers visited.

4.2 Triangulation of results: patient satisfaction

The quantitative analysis identified an association between internal locus of control and patient satisfaction, as well as an association between readiness to change and patient satisfaction. Furthermore, the qualitative analysis identified external factors such as communication skills from the healthcare professional as very important. Listening to the patients, taking them seriously, and explaining why the healthcare professional can or cannot help them, were all considered just as important as actually getting help. The statements from the quantitative data analysis did show that the reason patients kept seeking help was because healthcare professionals could not help them and advised them to continue seeking help elsewhere.

These results are comparable to other studies [8, 38]. One qualitative study on the care pathways of patients with persistent orofacial pain also showed that these journeys are not always as efficient as patients are looking for help from different healthcare providers to get their pain diagnosed and managed [38]. Patients often have to wait for referrals to specialists or other healthcare providers, and waiting lists are long, which decreases patient journey efficiency and increases frustration [8, 38]. This may explain why even though most of the participants from the current study saw only three healthcare providers, they were still not satisfied with the patient journey.

Furthermore, the qualitative analysis showed that patients often had to ask for referrals themselves and act as their own case manager. Patients stated that they felt general healthcare providers did not have enough knowledge on orofacial pain to properly help or refer them. As orofacial complaints are in the area of the mouth and jaw, half of the patients (49%) visit their general dentist for help at first. Another study shows that when patients ask their dentist for help, but they cannot help them, this can sometimes lead to distrust and disappointment [39]. This feeling of helplessness is a common theme amongst qualitative studies for orofacial pain, including the current study [38, 39, 40]. The current study focused on the patients’ perspective. Previous studies have described the dentists’ perspective and showed that they usually want to help as much as they can, but sometimes lack the knowledge on orofacial pain to properly manage this type of patients [41]. Since these aspects are such an important part to a satisfactory patient journey from a patient’s perspective, future studies should look into the perspective of healthcare providers as well to improve this.

4.3 Strengths and limitations

One of the strengths of the current study is the use of the mixed methods design, where over 100 participants filled out a questionnaire on their patient journey and 10 of them were interviewed about their experiences. Even though these 10 participants do not speak for the experience of all 100 participants, we identified some strong themes that were also comparable to themes identified in other studies, indicating that the results are more generalizable for a persistent orofacial pain population [38, 42].

A limitation of the current study is that we only describe the patient journey until patients visit the OPD clinic at ACTA. The OPD clinic at ACTA might not be the last clinic the patients will visit. Some patients were referred to another healthcare provider, so their patient journey continued further. Future studies should also follow the patient journey of those patients, to allow cluster analyses to identify which patients benefit from a specialized clinic such as the OPD clinic, and which patients should be seen by other specialties. Furthermore, only including participants from a single clinic could possibly lead to selection bias, especially since the patients coming to this clinic are often more complex. This should be taken into consideration when interpreting the findings of this study.

Another limitation of this study is that the literacy level of the included participants was not checked, which may have resulted in a bias in the results. Specifically, people with higher levels of literacy tend to be more active in the decision-making process which could also influence the patient journey [43]. Future studies should therefore also take (health) literacy into account when looking at factors influencing patient journeys. Furthermore, the use of questionnaires and surveys regarding experiences in the past could lead to potential recall bias. As most people with orofacial pain start their journey at the dentist or general medical physician, it would be interesting to follow people on their journey from that moment in future research. Lastly, the MPRC questionnaire was translated into Dutch, but not validated in the Dutch language. The English version of the MPRCQ show good validity and responsiveness [29], but as this is not determined for the Dutch version this may influence the interpretation of results.

4.4 Clinical implications

Patients in the current study often visited their general dentist as their first healthcare provider for their orofacial complaints but also stated that there was a perceived lack of knowledge on the complexity of orofacial pain and an absence of other healthcare providers who could support the diagnostic and treatment process. Other studies have shown that especially newly graduated dentists do not perceive their knowledge on orofacial pain as adequate [44, 45, 46], which party confirms the perspective of the patients in the current study. It is important to note, however, that the statement on the lack of knowledge was about all healthcare providers visited. The perceived knowledge of other healthcare providers on orofacial pain has not yet been described in the literature. So based on the perspective of the patients of the current study, it is therefore important that the general dentists, as well as other first healthcare providers visited such as the general medical physician or physiotherapist, increase their knowledge on orofacial pain. For general dentists, education regarding orofacial pain should not only be part of the mandatory predoctoral dental curricula as it often is already, but it should be enhanced to the general dentists will experience a higher level of knowledge after graduating. For this, international guidelines to describe the content of such enhanced dental curricula, including some clinical experience with TMD patients as a prerequisite for all dental students before graduation, could be established to ensure higher levels of knowledge on orofacial pain [47].

Furthermore, one of the biggest themes identified that healthcare providers should include in their daily practice, is that the patient wants to be taken seriously. Other studies have also shown that patients with orofacial pain get frustrated when they do not get answers about their complaints, and when healthcare providers do not listen or do not show compassion [40, 42]. Since patients who understand their complaints and who feel that they are taken seriously often establish a stronger therapeutic alliance and show more self-efficacy [48], it is important that healthcare providers take this into consideration when communicating with their patients with orofacial pain.

Lastly, it is important to put the findings of this study in the context of the country and healthcare system in which this study was performed. In the Netherlands, dentists are often the primary point of contact for orofacial pain, whereas in other countries, this may be the maxillofacial surgeon [49]. Hence, the overall results regarding factors that may have influenced the patient journey satisfaction, both from questionnaire data and interviews, should be taken into the clinic and perhaps studied in different countries to confirm the external validity of these results.