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Patient Expectations of Visiting Department of Oral Medicine for Burning Mouth Syndrome: Relationship between Expectations and Clinical and Psychological Characteristics
Journal of Oral Medicine and Pain 2019;44:147-153
Published online December 30, 2019;  https://doi.org/10.14476/jomp.2019.44.4.147
© 2019 Korean Academy of Orofacial Pain and Oral Medicine

Hye-Kyoung Kim, Mee-Eun Kim

Department of Oral Medicine, College of Dentistry, Dankook University, Cheonan, Korea
Correspondence to: Mee-Eun Kim
Department of Oral Medicine, College of Dentistry, Dankook University, 119 Dandaero, Dongnam-gu, Cheonan 31116, Korea
Tel: +82-41-550-1915 Fax: +82-505-434-7951 E-mail: meunkim@dankook.ac.kr https://orcid.org/0000-0001-9332-532X
Received November 22, 2019; Revised November 29, 2019; Accepted December 3, 2019.
This is an open-access article distributed under the terms of the Creative Commons Attribution Non-Commercial License (http://creativecommons.org/licenses/by-nc/4.0) which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original work is properly cited.
Abstract

Purpose

The aims of this study were to investigate the expectation of patients with burning mouth syndrome (BMS) and assess the relationship between patient expectations and clinical and psychological characteristics.

Methods

Eligibility was retrospectively assessed on 93 patients with BMS. A total of five questionnaires on patients’ expectation for a visit, pain, sleep quality (Pittsburgh Sleep Quality Index), cognition (Pain Catastrophizing Scale) and psychological distress (Symptom Checklist-90 revised) were measured.

Results

Sixty-five patients were included in this study. The top 3 priorities of expectation for a treatment visit to the Department of Oral Medicine were as following; “I want my pain to be free”; “I want to understand why it hurts”; “I want to communicate better with doctors about pain”. Patients with priority of pain relief showed poor sleep quality than patients who are more interested in the disease related information.

Conclusions

To improve treatment outcomes of BMS, clinicians should improve their own understanding of patients who are suffering from BMS. Inquiring about the patient expectations may be one of them, and it would contribute to the enhancement of patients’ overall well-being.

Keywords : Burning mouth syndrome; Expectation; Surveys and questionnaires
INTRODUCTION

Burning mouth syndrome (BMS), also called glossodynia or stomatodynia, is one of the most common, but debilitating oral condition that is characterized by constant burning sensations in the oral mucosa, which does not appear to be abnormal by visual examination or laboratory tests [1,2]. In addition to burning pain, it simultaneously presents a variety of symptoms including xerostomia, dysgeusia, and even psychological distress. However, compared to the great disability of patients, the lack of consensus on the etiology of BMS has made it extremely difficult to establish a correct treatment protocol. Many previous studies have reported that poorly treated BMS can cause patients to visit several hospitals to seek further medical treatment and therefore, has a significant negative impact on the quality of individual life [35]. As mentioned above, patients with BMS may have a long history of oral pain and experience repetitive treatment failure.

Considering the natural course that a patient feels anxiety about a refractory pain of unknown etiology, it is not surprising that BMS, as a chronic pain, is frequently involved with stressful life events and psychological conditions including depression, anxiety, neuroticism and cancerphobia [2,6]. These intractable clinical problems that cannot be fully explained by biological processes are also a challenge for clinicians and thus, even little information on the patients might be a great help to clinicians.

In this context, assessing and understanding the expectations and priorities that BMS patients have may help clinicians to optimize treatment and support patients and finally improve patient-reported outcomes. However, to the authors’s knowledge, little is known about the expectations of patients with BMS.

Therefore, the aims of this study were to investigate the expectation of patients with BMS and assess the relationship between patient expectations and clinical and psychological characteristics.

MATERIALS AND METHODS

1. Subjects

This study was the second part of a study that investigated characteristics of patients with BMS. Part I of the study also examined the pain intensity and interference, sleep quality and psychological distress with the same patients, and it has been previously published [7]. Details of subjects and procedures are described in Lee’s study [7].

Between January 2017 to August 2018, a total of 93 patients were diagnosed as BMS at the Department of Oral Medicine of Dankook University Dental Hospital according to the guidelines from the International Classification of Headache Disorders, 3rd edition (beta version) [8]. Inclusion and exclusion criteria are well described in Lee’s study [7]. To rule out the possible secondary causes of BMS, blood test, candida test and salivary flow rate test were performed.

All patients were asked to complete a number of questionnaires prior to initial examination as part of standard protocol of the Department of Oral Medicine of Dankook University Dental Hospital in the waiting room.

Informed consent for using their clinical data for the research purpose prior to the initial examination was obtained. Data were collected retrospectively from clinical records and questionnaires of the eligible patients. The current study was approved by the Institutional Review Board committee of Dankook University Dental Hospital (IRB no. DKUDH IRB 2018-09-001).

2. Assessment of Patients’ Expectation

Patients’ expectation of visiting to the Department of Oral Medicine was assessed using the self-reported questionnaire (Table 1). This questionnaire includes a total of fourteen questions associated with expectation. Patients can select a total of six questions out of the 14 items in the order of their priority. Then, the sum ratio of top three priorities for each question was calculated and used for further comparison.

3. Assessment of Pain and Mental Condition

The four questionnaires on pain and mental condition used in this study are the same as those used in part I [7], and are described in detail elsewhere. The Brief Pain Inventory (BPI) is a valid tool for assessment of pain [9]. In this study, Korean version of BPI [10] was used to measure the pain intensity and pain interference of patients. The Pittsburg Sleep Quality Index (PSQI), a valid and reliable questionnaire for evaluation of subjective sleep quality, was used to measure the sleep quality of patients with BMS in this study [11]. Catastrophizing thinking was measured by pain catastrophizing scale (PCS) [12]. It consists of 3 components including rumination, magnification and helplessness and one total score. Psychological conditions including depression and anxiety were evaluated using the Symptom Checklist-90 revised (SCL-90R) [13]. It measures nine subtypes of psychopathology.

4. Data Analysis

Considering that the possible influence of sex, age and pain duration on the pain experience, data from age, sex, pain duration to pain severity and interference, PCS, PSQI, and SCL-90R from questionnaires were used for statistical analyses. Demographics and pain characteristics of the patients were presented as percentage and frequency. The percentage of expectation rank for each question in the questionnaire were calculated using descriptive statistics. Comparison between groups was performed using the Independent sample t-test. Statistical analyses were conducted using IBM SPSS Statistics for Windows, Version 21.0 (IBM Co., Armonk, NY, USA) and statistical significance was set at p=0.05.

RESULTS

1. Patient Characteristics

Demographics of the study population are described in Table 2. Ninety-three eligible patients were enrolled in this study. Among them, 65 patients were finally included according to the inclusion and exclusion criteria. 56.9% of the patients were female. The mean±SD age and disease duration were 54.8±14.8 years and 21.8±30.7 months, respectively. At baseline, the mean±SD pain severity and pain interference measured by BPI were 4.2±2.6 and 4.4±3.1, respectively.

2. Patient Expectation Ratings

Patients rated priorities on their expectations of visiting Department of Oral Medicine. The Fig. 17 show the proportion of patients’ expected ranking from the first to sixth and the sum ratio of the first, second and third rank for each question in the expectation questionnaire.

In the question “I want my pain to be free”, the sum percentage of expectation rank of 1, 2, and 3 was 76.8% (Fig. 1). For the question “I wish I had less pain”, 29.2% was recorded for the sum percentage of expectation rank of 1, 2, and 3 (Fig. 2). In Fig. 3, the sum percentage of expectation rank of 1, 2, and 3 for the question “I want to understand why it hurts” was 76.9%, which showed the highest proportion of rank 1,2 and 3 with question “I want my pain to be free” (76.8%). The question “I want to communicate better with doctors about pain” showed 66.2% of expectation rank of 1, 2, and 3 (Fig. 4). Proportion of expectation rank for the question “I want to be reassured that my pain is not a sign of a more serious disease”, “I want to have a thorough investigation of my problem” and “I want to get pain medication” were 21.6% (Fig. 5), 18.4% (Fig. 6) and 10.7% (Fig. 7).

3. Comparison of Clinical and Psychological Characteristics between Two BMS Groups with Different Expectation

Table 3 shows the clinical and psychological characteristics differences between two groups with different patient’s expectation.

Of the four expectations that patients value most, patients with the highest expectations in question 1 (I want my pain to be free) and 2 (I wish I had less pain) were stratified into group 1 (n=33). On the other hand, patients who have the highest expectations in question 3 (I want to understand why it hurts) and 4 (I want to communicate better with doctors about pain) were classified into group 2 (n=32). In this stratification, group 1 indicates the patients who focused on being free of pain, understanding the cause of pain, as an expectation, was main characteristics of group 2.

Two groups did not show statistical differences between clinical characteristics including sex (p=0.132), age (p=0.461), duration (p=0.183), pain severity (p=0.122) and pain interference (p=0.446). Pain catastrophizing scores including three dimensions of magnification (p=0.946), rumination (p=0.590) and helplessness (p=0.866) also did not differ between two groups. Multiple dimensions of SCL-90R were compared between two groups. Although the mean Somatization score of group 1 was higher than that of group 2, it did not reach statistical significance (p=0.061). Like somatization, other dimensions of SCL-90R did not statistically differ between two groups. On the other hand, the mean score of global PSQI index was significantly higher in group 1 than group 2 (p=0.035).

DISCUSSION

Previous studies revealed that BMS has a negative impact on the quality of life of patients, but individualized management can improve the patient-reported outcomes including intraoral pain and quality of life [5,14]. For tailored approach, knowledge on the priorities and expectations of patients is valuable.

In this study, the top 3 priorities of expectation for a treatment visit to the Department of Oral Medicine were as following; “I want my pain to be free”; “I want to understand why it hurts”; “I want to communicate better with doctors about pain”.

Among 65 patients, no one patients first visited the Department of Oral Medicine due to oral pain. Despite previous conservative treatment, patients had high expectations about relieving pain and understanding the cause of pain. Patients prioritized for the complete disappearance of pain (76.8%) rather than less pain (29.2%). Patients also expected it was important to know why I am sick (76.9%) and to listen to the doctor’s detailed explanation (66.2%) rather than knowing that my illness was not serious (21.6%) or get a prescribed medicine (10.7%). Generally, it is reported that BMS patients show a great fear of oral cancer called cancerphobia, and therefore, treatment should be focused on supportive reassurance that it is not a serious condition such as oral cancer [15]. Interestingly, this study presents that BMS patients do not give priority to this point.

In this study, two groups with different priority of pain-focused and information-focused expectation were stratified and compared of clinical and psychological characteristics at baseline. Two groups did not show any differences in clinical aspects including demographic and pain characteristics. Also, there was no differences in pain catastrophizing and psychological distress such as depression and anxiety between two groups. Interestingly, the mean score of global PSQI index was significantly higher in pain-focused group than information-focused group (p=0.035). Adamo et al. [16] reported the high prevalence of poor sleep quality in BMS patients. Furthermore, strong positive relationship between poor sleep quality and pain experience in chronic orofacial pain was demonstrated in previous studies [1619]. Considering this bidirectional association between sleep and pain, sleep problem should be more considered in BMS patients with the expectation focused on pain.

Overall, patients had very high expectations for relieving pain and information. Despite similar pain scores and psychological characteristics, patients focused on pain demonstrated poor sleep quality than patients with information-oriented expectations. These results may have implications for prioritizing treatment protocol. For patients with pain-oriented expectations, active pain-relieving approach with evaluation of comorbid sleep problem should be focused first. On the other hand, providing adequate medical information including disease characteristics and medication effects and related education on pain control and improving functionality in daily activities should be focused for patients who prioritize disease-related information. This education and reassurance may help the patients follow the treatment plan and medication adherence.

The question of whether treatment based on patient’s expectations improves outcomes deserves further research. In addition, further studies are required to investigate whether treatment prognosis differ between patients with different expectations despite the same pain levels and emotional stress, and whether treatments considering expectation priorities are effective.

In conclusion, patients with priority of pain relief showed poor sleep quality than patients who are more interested in the disease related information. To improve treatment outcomes of BMS, clinicians should improve their own understanding of patients who are suffering from BMS. Inquiring about the patient expectations may be one of them, and it would contribute to the enhancement of patients’ overall well-being.

CONFLICT OF INTEREST

No potential conflict of interest relevant to this article was reported.

Figures
Fig. 1. Proportion of expectation rank for the question “I want my pain to be free”. R indicates rank of the patient’s expectations for the question. % of rank 1+2+3=76.8%
Fig. 2. Proportion of expectation rank for the question “I wish I had less pain”. R indicates rank of the patient’s expectations for the question. % of rank 1+2+3=29.2%
Fig. 3. Proportion of expectation rank for the question “I want to understand why it hurts”. R indicates rank of the patient’s expectations for the question. % of rank 1+2+3=76.9%
Fig. 4. Proportion of expectation rank for the question “I want to communicate better with doctors about pain”. R indicates rank of the patient’s expectations for the question. % of rank 1+2+3=66.2%
Fig. 5. Proportion of expectation rank for the question “I want to be reassured that my pain is not a sign of a more serious disease”. R indicates rank of the patient’s expectations for the question. % of rank 1+2+3=21.6%
Tables

Demographics and pain characteristics

VariableValue (n=65)
Age (y)54.8±14.8
Female37 (56.9)
Pain duration (mo)21.8±30.7
BPI
 Pain severity4.2±2.6
 Pain interference4.4±3.1

BPI, Brief Pain Inventory.

Values are presented as mean±standard deviation or number (%).

The questionnaire and scale of patient’s expectation of the first visit to the Department of Oral Medicine

Please read the following information, and select 6 things that you think are important, and give them a number (1, 2, 3, 4, 5, 6), where 1 for most important, 2 for second most important)
1I want my pain to be free.
2I wish I had less pain.
3I want to understand why it hurts.
4I want to communicate better with doctors about pain.
5I want to be reassured that my pain is not a sign of a more serious disease.
6I want to have a thorough investigation of my pain problem.
7I want to get pain medication.
8I want to learn how to cope with pain.
9I want to feel less depressive.
10I want to return my daily life (work/school/family life).
11I have no expectation for the visit.

Comparison of clinical and psychological characteristics between two groups with different patient’s expectation (n=65)

VariableGroup 1 (n=33)Group 2 (n=32)p-value
Clinical characteristics
 Sex0.132
 Age56.4±14.653.5±15.70.461
 Duration16.9±25.327.8±36.40.183
 Pain severity3.7±2.44.7±2.70.122
 Pain interference4.1±2.84.7±3.40.446
Pain catastrophizing
 PCS_magnification5.4±3.55.5±3.60.946
 PCS_rumination7.8±5.27.1±5.50.590
 PCS_helplessness9.8±7.410.1±7.30.866
Sleep quality
 PSQI8.6±4.66.4±3.30.035
SCL-90R
 Somatization50.8±14.345.4±6.90.061
 depression45.5±12.644.5±10.00.733
 Anxiety48.4±14.044.2±7.40.135
 Obsessive-compulsive46.2±14.514.3±9.10.539
 Interpersonal sensitivity43.6±13.443.8±8.30.936
 Hostility47.2±13.543.2±3.30.103
 Phobic-anxiety50.0±18.745.6±7.50.219
 Paranoid45.1±13.842.2±6.20.277
 Psychosis46.9±13.644.6±6.80.407

PCS, pain catastrophizing scale; PSQI, Pittsburg Sleep Quality Index; SCL-90R, Symptom Checklist-90 revised.

Values are presented as mean±standard deviation.

Group 1 indicates “I want my pain to be free” (CC1), “I wish I had less pain” (CC2). Group 2 indicates “I want to understand why it hurts” (CC3), “I want to communicate better with doctors about pain (CC4).

p-values were obtained from the Independent sample t-test.

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