- Email: [email protected]
Patient preferences on sharing private information in dental settings
Original Contributions
Patient preferences on sharing private information in dental settings Sheela Raja, PhD; Marcio da Fonseca, DDS, MS; Emily P. Rabinowitz, BS ABSTRACT Background. The authors conducted a study to understand patients’ preferences and comfort levels in discussing personal medical, behavioral, and social information with their oral health care providers. Methods. A self-report survey was completed by US adults 18 years and older (N ¼ 387) using Amazon Mechanical Turk, an online research portal for survey-based research. The survey assessed comfort discussing demographics, physical health, behavioral health, oral health, and living conditions with oral health providers. Results. Factor analysis suggested that participants were comfortable discussing demographics and standard dental questions but were less comfortable answering questions about trauma, stress, coping, and living and behavioral patterns. Demographics did not predict comfort with disclosure, and many participants did not feel personal information was relevant to oral health care. Conclusions. Community education efforts can focus on helping patients understand how oral health is related to behavioral health and social conditions. Practical Implications. Dental education should focus on helping oral health care providers communicate comfortably around these topics, balancing education with respect for a patient’s willingness to disclose. Key Words. Dental education; health care communication; behavioral science. JADA 2020:151(1):33-42 https://doi.org/10.1016/j.adaj.2019.08.015
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ral health is an important part of a patient’s overall health and functioning. Conditions or diseases, such as arthritis, heart disease, stroke, diabetes, emphysema, and hepatitis C, are associated with a greater number of missing teeth and poorer oral health; diseases may also initially manifest in the oral cavity.1,2 In addition, oral health has been linked with many social and behavioral determinants of health including unemployment, poverty, tobacco use, race or ethnicity, medical status, and dietary habits.3 Socioeconomic status may explain partially the relationship between systemic inflammation and periodontal disease.4 Many adults in the United States report that the ability to pay for services is a major barrier to their receiving regular oral health care.5 Food insecurity, which is related to socioeconomic status, has been associated with caries risk in children.6,7 Behavioral health may also influence oral health; for example, patients with higher depression and anxiety scores tend to have more missing teeth and poor periodontal health.8-10 Furthermore, unhealthy habits, such as tobacco use and high sugar consumption, are related to the global health burdens of periodontal disease, oral cancer, and caries.11 The commonly used term patient-centered care suggests a focus on a disease and may have become inadequate as health care professionals continue to learn about the important roles behavioral health and social determinants play in the patient’s overall health. Patient-centered care may still emphasize a specific disease or problem and may not focus on the patient’s physical or social environment. In contrast, the term person-centered care seems preferable as it puts the person (as opposed to a medical patient) and the family at the center of all decision-making related to health, including oral health.12,13 To fully consider all potential etiologies or contributing factors that may play a role in oral health problems, oral health care providers must be able to discuss sensitive and personal issues with patients. For example, being able to discuss depression and anxiety JADA 151(1)
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Copyright ª 2020 American Dental Association. All rights reserved.
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with patients is important because mental health may impair regular oral hygiene practices.9 Injuries in the oral soft tissues, head, and neck, as well as dental trauma, may be a sign of violent relationships, including child abuse.14,15 The principle Beneficence (“do good”) in the American Dental Association’s Principles of Ethics and Code of Professional Conduct states that dentists have an obligation to recognize the symptoms of abuse and neglect and to report suspected cases to the appropriate authorities on the basis of their local jurisdiction.16 Moreover, the Healthy People 2020 objectives OH-7 and OH-8 aim to increase availability and access to preventative oral health interventions; addressing barriers to care such as stigma and anxiety is critical to reaching these goals.17 However, few oral health care professionals ask patients about the social and behavioral aspects of their health. In addition to feeling uncomfortable with personal questions, dentists may not know how to respond when patients reveal medical and social needs outside of the scope of “dental needs.” For example, Parish and colleagues18 conducted a survey of a nationally representative sample of dentists and found that two-thirds of respondents did not feel their professional role should involve screening for substance abuse. Dentists who had received training on this issue were more likely to screen for substance abuse in practice. Similarly, in a national survey, dentists who perceived that their patients and peers would be accepting were more likely to feel comfortable offering rapid HIV tests in their practice.19 Screening in the dentist office for common health problems that have a larger perceived connection to oral health care, such as heart disease, high blood pressure, HIV, diabetes, and hepatitis, has been found to be accepted by patients in private and dental school settings.20 Dental school patients were more comfortable with these practices than private dental clinic patients.20 This may be because dental school patients have less access to a consistent primary care provider, so they are more comfortable with the dentist performing these screenings. Taken together, the literature suggests that the role of the dentist is shaped by how dentists perceive their own roles in the health care system and by patient perceptions of dentists’ expertise. Little is known about what topics patients feel comfortable discussing with their dentists or dental hygienists. As dentistry has placed an increasing importance on interprofessional collaboration,21 understanding patient perceptions of the dentists’ role in their health care is essential. The objectives of our study were to understand patients’ preferences about and comfort levels in discussing personal medical, behavioral, and social information with their oral health care providers and assess the relationship between demographic factors and patients’ comfort levels in discussing this type of information with oral health care providers.
ABBREVIATION KEY MTurk: Mechanical Turk.
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METHODS This study was approved by the institutional review board of the University of Illinois at Chicago, Chicago, Illinois. Using Qualtrics software, we uploaded a 65-item survey via the Amazon Mechanical Turk (MTurk) to recruit participants. MTurk is an online platform that increasingly is being used to recruit national samples in science research.22 The participants, referred to as “workers,” create a user profile, which is then used to filter available surveys on the basis of eligibility criteria. The online platform then allows participants to sign up for any survey for which they are eligible. Similar to other online programs, the popularity of MTurk has grown in the past decade via word of mouth and social networks, and now many social science surveys are completed in this manner. Researchers are not involved in directly recruiting participants as eligible MTurk users can choose in which studies they participate. MTurk allows researchers to define inclusion and exclusion criteria for participants. Participants in our study were online MTurk workers 18 years or older, residents of the United States, and able to read English. An introductory information sheet advised all participants that the survey was voluntary and their answers would not be linked to their identity. All participants provided informed consent. Each participant received $1.50 for completing the survey. To ensure anonymity, participants were paid separately by MTurk and were not compensated directly via our study. We created the survey on the basis of our experience working with patients in a large, urban, diverse university setting. The survey had 5 sections: demographics, physical health, behavioral health, oral health, and living conditions (Table 1). We conducted a pilot survey of 25 MTurk participants to ensure readability and ease of administration. Participants (N ¼ 387) completed a demographics section about their sex, age, race, ethnicity, sexual orientation, income, and JADA 151(1)
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Table 1. Topics covered in each survey section. SURVEY SECTION
SPECIFIC SURVEY QUESTIONS
Demographics
Age, sex, race and ethnicity, citizenship and immigration status, educational level, marital status, number of children, number of people living in the household, household income, employment status, medical and dental insurance, use of government programs
Physical Health
Dietary habits, weight, medications, frequency of dental visits, breast-feeding practices
Behavioral Health
Depression, anxiety disorder, alcohol or drug abuse, use of psychiatric medications, traumatic or stressful experiences, domestic or interpersonal violence, cigarette smoking, guns in the house, use of seatbelts
Oral Health
Condition of the participant’s dentition, toothbrushing or flossing habits
Living Conditions
Housing problems, home conditions, food problems, family member in jail
Table 2. Original factor analysis. EIGENVALUE
VARIANCE, %
1
FACTOR
11.537
36.054
2
4.414
13.794
3
2.528
7.901
4
1.432
4.476
5
1.203
3.760
6
1.136
3.549
education. They also reported the time frame of their most recent medical and dental visits. Within each section of the survey, participants were asked to perform the following: n rate their comfort level in answering questions about each topic at the dentist’s office, using a Likert scale ranging from 1 (not at all comfortable) through 5 (extremely comfortable); n check as many answers as they wished that followed the question “Please tell us why you would not be comfortable sharing information about these topics with your dentist’s office.” The possible responses were “I don’t like to discuss these private topics with my dentist,” “I am concerned that my answers will be documented in my medical or dental chart,” “I am concerned that my answers will influence my insurance (for example, increased premiums or concerns about having a preexisting condition),” “I don’t believe these questions have anything to do with my teeth or dental treatment,” and “Some other reason”; n choose their preferred method for providing personal information at the dentist. The possible responses were “On a paper form that I fill out myself,” “On a form on the computer that I fill out myself,” “In a face-to-face interview with the dentist,” or “In some other way”; n answer whether any of their health care providers (dentist, medical physician, nurse) had asked about each topic in the past. We collected the data in 2-hour periods during 1 week in 2018. To maximize the variety of respondents, we balanced the periods to represent mornings, evenings, and afternoons, as well as weekdays and weekends. We conducted all analyses using the Statistical Package for the Social Sciences (IBM). Factor analysis To create an overall measure of patient comfort, we included Likert scale questions from all 5 sections of the survey in a factor analysis following standard procedures of scale development.23 We used pairwise deletion of missing data to include as many participants as possible in the factor analysis. Because we hypothesized that the factors would be correlated, we used a principal factors extraction and an oblique (oblimin) rotation. Initially, we conducted an unrestricted factor analysis to discover how many factors were the best fit (Table 2). We then allocated scale items to each factor on the basis of their eigenvalues (Table 3). We eliminated the variable of “weight” from the scale development on the basis of its inability to load onto a single factor via theory or eigenvalues. We added the variable “sex” to factor 3 on the basis of a theoretical conceptualization that it was most similar to the other variables describing
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Table 3. Factor loading of items. FACTOR LOADING (PEARSON CORRELATION) OF ITEMS
ITEM
1
2
3
4
Age
0.102
0.689
0.530
0.028
Sex
0.114
0.582
0.583*
0.001
Race or Ethnicity
0.209
0.410
0.643
0.043
Citizenship or Immigration Status
0.314
0.092
0.732
0.228
Education Level
0.342
0.170
0.806
0.358
Marital Status
0.333
0.268
0.778
0.255
Number of Children You Have
0.410
0.192
0.803
0.338
Number of People Living With You
0.396
0.040
0.766
0.509
Household Income
0.417
0.056
0.557
0.600
Employment Status
0.424
0.228
0.640
0.493
Type of Medical and Dental Insurance You Have
0.147
0.624
0.489
0.049
Use of Government Programs
0.480
0.027
0.466
0.615
Dietary Habits
0.474
0.585
0.272
0.301
Weight†
0.466
0.488
0.238
0.343
Medications
0.514
0.615
0.348
0.176
How Often You Visit the Dentist
0.272
0.734
0.159
0.055
Breast-feeding Practices
0.537
0.080
0.338
0.601
Diagnosed With Depression
0.892
0.111
0.310
0.567
Diagnosed With an Anxiety Disorder
0.887
0.183
0.339
0.492
Diagnosed With Alcohol or Drug Abuse
0.851
0.167
0.367
0.517
Use of Psychiatric Medications
0.850
0.229
0.280
0.481
Traumatic or Stressful Experiences That Might Have Affected You
0.822
0.119
0.242
0.559
Domestic or Interpersonal Violence Experiences You May Have Had
0.800
0.067
0.291
0.649
Cigarette Smoking in Your Household
0.620
0.418
0.396
0.303
Whether There Are Any Guns in Your House
0.563
0.006
0.387
0.758
How Often You Use a Seatbelt While Driving or Riding in a Car
0.558
0.031
0.436
0.651
The Condition of Your Teeth
0.079
0.800
0.125
0.090
Your Toothbrushing or Flossing Habits
0.064
0.783
0.099
0.122
Housing Problems You Have or May Have Had
0.515
0.043
0.211
0.917
Your House Itself
0.508
0.041
0.275
0.922
Food Problems You Have or May Have Had
0.547
0.101
0.207
0.828
You or a Family Member Being Arrested or in Jail or Prison
0.506
0.015
0.200
0.883
* Sex was assigned to factor 3 on the basis of theory. † Weight was removed from the factor analysis.
demographic variables (race, marital status, employment). The figure shows each of the factors and their variables and mean scores. RESULTS Participants (N ¼ 387) in this study were an average (standard deviation) of 37.1 (11.9) years of age. Most were white (79.6%) and women (58.7%). Respondents came from a variety of income brackets and educational levels (Table 4). In addition, just 42.9% had seen their dentist in the past 6 months. Scale development Given that the percentage of variance explained and eigenvalues decreased less after 4 factors, we chose a fixed factor analysis with 4 factors. Factor 1 (mean [M], 2.9 of 5) was named “trauma, stress, 36
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Table 4. Respondents’ demographic information (N ¼ 387). VARIABLE
N (%)
Sex Male
157 (40.6)
Female
227 (58.7)
Other
2 (0.5)
Missing
1 (0.3)
Race and Ethnicity White
308 (79.6)
Black
30 (7.8)
Hispanic
14 (3.6)
Asian or Pacific Islander
24 (6.2)
Multiracial or biracial
7 (1.8)
Other
3 (0.8)
Missing
1 (0.3)
Household Income, $ 0-20,000
55 (14.2)
20,001-60,000
194 (50.1)
60,001-80,000
66 (17.1)
> 80,000
71 (18.3)
Missing
1 (0.3)
Education High school or less
39 (10.1)
Some college
123 (31.8)
College degree
155 (40.1)
Graduate or professional degree
65 (16.8)
Missing
5 (1.3)
Sexual Orientation Heterosexual
345 (89.4)
Bisexual
23 (6.0)
Homosexual
18 (4.7)
Missing
1 (0.3)
History Visiting Dentist 0-6 months ago
166 (42.9)
1 year ago
79 (20.4)
> 1 year ago
140 (36.2)
Missing
2 (0.5)
and coping” and included a number of items related to trauma, mental health, and coping mechanisms (drugs and alcohol). This 7-item factor had a Cronbach a of .925. Factor 2 (M, 4.35 of 5) was named “standard dental questions” and included questions that participants are used to being asked at the dentist, including age, insurance, medications, and toothbrushing habits. This 7-item factor had had a Cronbach a of .829. Factor 3 (M, 4.0 of 5) was termed “demographics” because it included demographic information, such as race and ethnicity, education, number of children, and marriage status. This 8-item factor had a Cronbach a of .878. Factor 4 (M, 2.45 of 5) was named “living and behavioral patterns” because it included information about conditions in which patients live (housing and food insecurity, guns in the house, and others) and behavioral patterns (use of JADA 151(1)
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Table 5. Factor scores by demographic group. VARIABLE
MEAN (STANDARD DEVIATION) SCORE Trauma, Stress, and Coping
Standard Dental Questions
Demographics
Living and Behavioral Patterns
Sex Male
3.00 (1.25)
4.37 (0.63)
3.97 (0.86)
2.61 (1.16)
Female
2.90 (1.13)
4.33 (0.58)
4.04 (0.86)
2.24 (1.09)
Heterosexual
2.96 (1.18)
4.37 (0.59)
4.02 (0.86)
2.47 (1.12)
Bisexual
3.09 (1.20)
4.22 (0.68)
4.08 (0.86)
2.75 (1.16)
Homosexual
2.54 (1.35)
4.44 (0.42)
3.71 (0.72)
2.40 (1.35)
Sexual Orientation
Race and Ethnicity White
2.90 (1.1.6)
4.32 (0.60)
4.02 (0.86)
2.46 (1.13)
Black
3.14 (1.31)
4.49 (0.61)
4.07 (0.81)
2.48 (1.07)
Hispanic
2.75 (1.01)
4.39 (0.60)
3.87 (0.77)
2.33 (1.00)
Asian or Pacific Islander
3.35 (1.35)
4.48 (0.48)
3.49 (1.00)
2.66 (1.16)
Multiracial or biracial
4.06 (0.68)
4.27 (0.43)
4.23 (.052)
3.19 (1.29)
Other
1.67 (0.36)
3.50 (0.33)
4.04 (0.59)
1.89 (0.80)
Table 6. Comfort level of participants disclosing information by method used. METHOD OF DISCLOSURE
GROUP OF QUESTIONS
Paper
Demographic
266 (68.7)
Physical health
263 (67.7)
Behavioral health
250 (64.6)
Oral health
262 (67.7)
Living conditions
223 (57.6)
Demographic
202 (52.2)
Physical health
210 (54.3)
Computer Form
Face to Face
PARTICIPANTS, NO. (%)
Behavioral health
200 (51.7)
Oral health
224 (57.9)
Living conditions
202 (47.8)
Demographic
113 (29.2)
Physical health
137 (35.4)
Behavioral health
127 (32.8)
Oral health
233 (60.2)
Living conditions
141 (36.4)
government programs, breast-feeding, and others). Overall, this factor offers information about the patient’s socioeconomic position, as well as relevant conditions that may affect the person’s health (time in jail or income). This 9-item factor had a Cronbach a of .915. Overall, participants were not comfortable disclosing information on the trauma, stress and coping and living and behavioral patterns factors. Participants were comfortable discussing information on the standard dental questions and the demographics factors. We attempted to assess whether the means for each information comfort scale were different for demographic groups. However, when we examined the means of each factor by demographic group,
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Table 7. Reasons participants prefer not to discuss personal information. REASON
GROUP OF QUESTIONS
Do Not Want to Discuss Private Information
Demographic
97 (25.1)
Physical health
72 (18.6)
Behavioral health Oral health Living conditions Do Not Want Information Documented in Chart
3 (1.0) 153 (40.0) 30 (7.8)
Physical health
12 (3.1)
Behavioral health
61 (15.8) 4 (1.0)
Living conditions
33 (8.5)
Demographic
46 (11.9)
Physical health
11 (2.8)
Behavioral health
38 (9.8)
Oral health Living conditions Do Not Believe Information Is Relevant to Dental Care
147 (38.0)
Demographic
Oral health
Worried How Information May Influence Insurance
PARTICIPANTS, NO. (%)
2 (0.5) 19 (4.9)
Demographic
196 (50.6)
Physical health
146 (37.7)
Behavioral health
238 (61.5)
Oral health Living conditions
1 (0.0) 264 (68.2)
the means appeared too similar to warrant further parametric testing. Table 5 shows mean scores for demographic groups on all 4 factors. Preferences in reporting sensitive information Across the 5 original survey sections (demographics, physical health, behavioral health, oral health, and living conditions), participants were more comfortable sharing information via paper and computer tools rather than in person (Table 6). Although 60% of the participants were comfortable sharing oral health information in a face-to-face interview with a provider, they were less comfortable discussing demographic information, behavioral health, physical health, and their living conditions in face-to-face interviews. The main reason that patients gave about why they objected to providing certain information was that they did not believe the information was relevant to dental treatment (Table 7). For example, many participants did not think their living conditions, behavioral health, or demographics were relevant to dental treatment (68%, 62%, and 51%, respectively). Some participants also indicated that they did not want to discuss private information about living conditions, behavioral health, and demographics with their dentist (40%, 38%, and 25%, respectively). DISCUSSION In this study, we assessed participants’ comfort levels in discussing specific types of information with their dentists. A factor analysis of the survey revealed 4 categories of information that participants’ comfort levels clustered around trauma, stress and coping; standard dental questions; demographics and living and behavioral patterns. As hypothesized, patients are comfortable discussing standard dental questions and relevant demographics in dental settings. Although we were unable to find any demographic differences within each of the information comfort factors, the findings of our study show that participants are less comfortable sharing information about trauma, stress, and coping and living and behavioral patterns than they are sharing information about dental history and typical demographics (Figure). JADA 151(1)
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Factor
1
2
3
4
Mean Score
2.9
4.35
4.0
2.47
Name
Trauma, stress, and coping
Standard dental questions
Demographics
Living and behavioral patterns
Variables
• Depression • Anxiety • Alcohol or drug abuse • Psychiatric medications • Trauma • Intimate partner violence • Cigarette smoking
• Age • Insurance • Dietary • Medications • How often visit the dentist • Condition of teeth • Toothbrushing habits
• Race and ethnicity • Immigration status • Education level • Marital status • Number of children • Number of people living with you • Employment • Sex
• Income • Use of government programs • Breast-feeding • Guns in house • Seatbelt use • Housing problems • Housing condition • Food problems • Jail or prison
Figure. Factor naming and conceptualization. Scores could range from 0 through 5. A score of 5 was “extremely comfortable.” The higher the mean score, the more comfortable people are discussing the topic with their dentist.
Underscoring the sensitive nature of some of the questions, patients preferred paper survey methods of screening compared with face-to-face discussions with a provider or computer questionnaires. Perhaps participants felt that paper surveys were less embarrassing or more anonymous than face-toface discussions. Patients also may have had concerns about how computer screenings would be stored, who would have access to the information, and possible online breaches of confidentiality. It is noteable that 1 of the main objections patients raised to sharing information was that they felt it was too personal or it was not relevant to dental treatment. The results of our study are consistent with previous work that underscored how difficult it is for dentists to discuss personal information with patients. For example, Parish and colleagues24 found that few dentists screen for interpersonal violence on their patient history forms. More than onehalf of dentists also did not know where to refer patients who are experiencing interpersonal violence and did not believe that routine screening should be part of their professional roles.24 This finding and ours are in contrast to aforementioned evidence showing that sensitive topics like intimate partner violence, mental health, and living and behavioral health conditions play an important role in oral health, including caries rates, periodontal disease, and number of missing teeth.6-10 Our findings suggest that part of the reason patients are uncomfortable discussing important information with their dentists is because they do not understand the role of these factors in their oral health. Similar research has found a lack of awareness of oral adverse effects of similarly stigmatized conditions like HIV and diabetes.25 Community education and public health efforts can focus on helping people understand how oral health is related to overall health and behavioral and social conditions.26 Patients may not be aware that medications used to treat mental illness have substantial adverse effects on oral health including xerostomia, dysgeusia, and tardive dyskinesia.27 Similarly, patients may not be aware that social conditions like history of incarceration28 or domestic violence29 have direct implications for oral health such as extended time without oral health care or improperly healed craniofacial fractures. These examples point to the necessity of explaining the link between these sensitive topics and oral health. Finally, dentists need to be provided with more education on how to communicate comfortably around these topics, balancing education with respect for a patient’s willingness to disclose. On a macro level, dental education and professional organizations can encourage dentists and trainees to work on interprofessional health care teams in which they are able to discuss sensitive topics and refer patients to trusted colleagues. Interprofessional collaboration may help change the subjective societal norms of the dentists’ role, with both providers and patients becoming more comfortable discussing sensitive topics. This study is not without limitations. The sample was limited by the MTurk population, and thus we do not know if our sample was representative of the US population as a whole. Workers who sign up for online tasks tend to be more educated and comfortable with 40
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technology and may be more likely to be unemployed than the general population. However, they are more likely to be representative of the population than undergraduate or convenience samples.30 MTurk users also tend to be younger and more educated than the overall population, suggesting that the need for education about oral health may be even greater in clinic-based populations.31,32 Our sample had a low percentage of nonwhite participants. It will be important for future work to sample minority populations, particularly because mistrust of the health care system historically has been greater among certain racial and ethnic subgroups (especially African Americans). A more representative sample may show even higher levels of discomfort with disclosure of sensitive information. The data were also based on self-reports. Furthermore, we used a measure of demographics that combined race and ethnicity, potentially explaining our inability to find a significant effect of that variable. Researchers in future studies could use detailed race and ethnicity measures such as those in the US census. However, we did collect a large sample (N ¼ 387) with significant social and economic diversity. Furthermore, our factor analysis creates a useful tool for understanding which topics patients are most likely to be uncomfortable discussing. Our survey asked participants about what topics they would discuss “at their dentist’s office.” Future studies can explore whether patients would be more or less willing to disclose to a hygienist than a dentist. CONCLUSIONS In an online study of 387 participants, we found that patients may not be comfortable discussing trauma, stress, coping, living conditions, and behavioral patterns with their oral health care providers. This suggests that future public oral health community education should focus on helping patients understand the link between oral health, behavioral health, and living conditions. In addition, dental education should focus on helping current and future oral health care providers feel more comfortable screening for these issues in ways that patients prefer. To our knowledge, our study is the first survey that has sought to understand patient preferences for disclosing personal information to dentist. As health care moves toward a more person-centered approach, this perspective is essential. Finally, our survey did not ask about patients’ comfort in discussing sexuality and sexual behavior with dentists. Future surveys should include this variable, in addition to the other behavioral and environmental variables we examined in this study. n SUPPLEMENTAL DATA Supplemental data related to this article can be found at https://doi.org/10.1016/j.adaj.2019.08.015.
Dr. Raja is an associate professor, Department of Pediatric Dentistry (MC 850), College of Dentistry, University of Illinois at Chicago, 801 S. Paulina St., Chicago, IL 60612, e-mail [email protected]. Address correspondence to Dr. Raja. Dr. da Fonseca is a professor and the head, Department of Pediatric Dentistry, College of Dentistry, University of Illinois at Chicago, Chicago, IL. Ms. Rabinowitz was a student, Department of Applied Psychology, New York University, New York, NY, when the work described in this article was conducted. She is now a graduate student, Department of Psychological Sciences, at Kent State University, Kent, OH.
1. Oral Health in America: A Report of the Surgeon General. Rockville, MD: U.S. Department of Health and Human Services, National Institute of Dental and Craniofacial Research, National Institutes of Health; 2000. 2. Centers for Disease Control and Prevention. Oral Health Surveillance Report: Trends in Dental Caries and Sealants, Tooth Retention, and Edentulism, United States, 1999-2004 to 2011-2016. Atlanta, GA: Centers for Disease Control and Prevention, US Dept of Health and Human Services; 2019. 3. da Fonseca MA, Avenetti D. Social determinants of pediatric oral health. Dent Clin North Am. 2017;61(3):519-532. 4. Gomaa N, Nicolau B, Siddiqi A, Tenenbaum H, Glogauer M, Quinonez C. How does the social “get under
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Disclosure. None of the authors reported any disclosures. Dr. da Fonseca received funding from the Underrepresented Minority Recruitment Funds. The authors would like to thank Ruchi Gupta, BDS, MBA, from the Pediatric Dentistry Department at the College of Dentistry at the University of Illinois at Chicago for her research assistance and Somya Anand, PhD, from the Survey Research Lab at University of Illinois at Urbana-Champaign for help with survey design.
the gums”? The role of socio-economic position in the oral-systemic health link. Can J Public Health. 2017; 108(3):e224-e228. 5. Dental Services: Information on coverage, payments, and fee variation. Washington, DC: U.S. Government Accountability Office; 2013. GAO publication: 13-754. 6. Chi DL, Masterson EE, Carle AC, Mancl LA, Coldwell SE. Socioeconomic status, food security, and dental caries in US children: mediation analyses of data from the National Health and Nutrition Examination Survey, 2007-2008. Am J Public Health. 2014;104(5): 860-864. 7. Muirhead V, Quinonez C, Figueiredo R, Locker D. Oral health disparities and food insecurity in working poor
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Canadians. Community Dent Oral Epidemiol. 2009;37(4): 294-304. 8. Alkan A, Çakmak Ö, Yılmaz S, Cebi T, Gurgan C. Relationship between psychological factors and oral health status and behaviours. Oral Health Prev Dent. 2015; 13(4):331-339. 9. Kisely S, Sawyer E, Siskind D, Lalloo R. The oral health of people with anxiety and depressive disorders: a systematic review and meta-analysis. J Affect Disord. 2016; 200:119-132. 10. Tyrovolas S, Koyanagi A, Panagiotakos DB, et al. Population prevalence of edentulism and its association with depression and self-rated health. Sci Rep. 2016;6: 37083.
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11. Rouxel PL, Heilmann A, Aida J, Tsakos G, Watt RG. Social capital: theory, evidence, and implications for oral health. Community Dent Oral Epidemiol. 2015;43(2):97-105. 12. Walji MF, Karimbux NY, Spielman AI. Personcentered care: opportunities and challenges for academic dental institutions and programs. J Dent Educ. 2017; 81(11):1265. 13. Mills I, Frost J, Cooper C, Moles DR, Kay E. Patient-centred care in general dental practice: a systematic review of the literature. BMC Oral Health. 2014; 14:64. 14. McAndrew M, Marin MZ. Role of dental professional identification and referral of victims of domestic violence. NY State Dent J. 2012;78(1):16-20. 15. Nelms AP, Gutmann ME, Solomon ES, Dewald JP, Campbell PR. What victims of domestic violence need from the dental profession. J Dent Educ. 2009;73(4):490498. 16. American Dental Association. Principles of Ethics and Code of Professional Conduct. Available at: https:// www.ada.org/en/about-the-ada/principles-of-ethics-code-ofprofessional-conduct. Accessed July 10, 2019. 17. Healthy People 2020. Washington, DC: U.S. Department of Health and Human Services, Office of Disease Prevention and Health Promotion. Available at: https://www.healthypeople.gov/2020/topics-objectives/topic/ oral-health/objectives. Accessed September 30, 2019.
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18. Parish CL, Pereyra MR, Pollack HA, et al. Screening for substance misuse in the dental care setting: findings from a nationally representative survey of dentists. Addiction. 2015;110(9):1516-1523. 19. Pollack HA, Pereyra M, Parish CL, et al. Dentists’ willingness to provide expanded HIV screening in oral health care settings: results from a nationally representative survey. Am J Public Health. 2014;104(5):872880. 20. Greenberg BL, Kantor ML, Jiang SS, Glick M. Patients’ attitudes toward screening for medical conditions in a dental setting. J Public Health Dent. 2012;72(1): 28-35. 21. Palatta A, Cook BJ, Anderson EL, Valachovic RW. 20 Years beyond the crossroads: the path to interprofessional education at U.S. dental schools. J Dent Educ. 2015;79(8): 982-996. 22. DeSoto A. Under the hood of Mechanical Turk. Available at: https://www.psychologicalscience.org/observer/ under-the-hood-of-mechanical-turk. Accessed April 30, 2019. 23. DeVellis RF. Scale Development: Theory and Applications. Thousand Oaks, CA: Sage Publications; 1991: 26. 24. Parish CL, Pereyra MR, Abel SN, Siegel K, Pollack HA, Metsch LR. Intimate partner violence screening in the dental setting: results of a nationally representative survey. JADA. 2018;149(2):112-121.
25. Edwards J, Palmer G, Osbourne N, Scambler S. Why individuals with HIV or diabetes do not disclose their medical history to the dentist: a qualitative analysis. Br Dent J. 2013;215(6):E10. 26. Watt RG. From victim blaming to upstream action: tackling the social determinants of oral health inequalities. Community Dent Oral Epidemiol. 2007;35(1):1-11. 27. Cockburn N, Pradhan A, Taing MW, Kisely S, Ford PJ. Oral health impacts of medications used to treat mental illness. J Affect Disord. 2017;223:184-193. 28. Treadwell HM, Formicola AJ. Improving the oral health of prisoners to improve overall health and wellbeing. Am J Public Health. 2008;98(9 suppl):S171-S172. 29. Lincoln HS, Lincoln MJ. Role of the odontologist in the investigation of domestic violence, neglect of the vulnerable, and institutional violence and torture. Forensic Sci Int. 2010;201(1-3):68-73. 30. McDuffie D. Using Amazon’s Mechanical Turk: benefits, drawbacks, and suggestions. Available at: https://www. psychologicalscience.org/observer/using-amazons-mechanicalturk-benefits-drawbacks-and-suggestions. Accessed September 30, 2019. 31. Berinsky AJ, Huber GA, Lenz GS, Alvarez RM. Evaluating online labor markets for experimental research: Amazon. com’s Mechanical Turk. Political Analysis. 2012;20(3):351-368. 32. Litman L, Robinson J, Abberbock T. TurkPrime.com: a versatile crowdsourcing data acquisition platform for the behavioral sciences. Behav Res. 2017;49(2), 443-442.
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Patient preferences on sharing private information in dental settings Sheela Raja, PhD; Marcio da Fonseca, DDS, MS; Emily P. Rabinowitz, BS ABSTRACT Background. The authors conducted a study to understand patients’ preferences and comfort levels in discussing personal medical, behavioral, and social information with their oral health care providers. Methods. A self-report survey was completed by US adults 18 years and older (N ¼ 387) using Amazon Mechanical Turk, an online research portal for survey-based research. The survey assessed comfort discussing demographics, physical health, behavioral health, oral health, and living conditions with oral health providers. Results. Factor analysis suggested that participants were comfortable discussing demographics and standard dental questions but were less comfortable answering questions about trauma, stress, coping, and living and behavioral patterns. Demographics did not predict comfort with disclosure, and many participants did not feel personal information was relevant to oral health care. Conclusions. Community education efforts can focus on helping patients understand how oral health is related to behavioral health and social conditions. Practical Implications. Dental education should focus on helping oral health care providers communicate comfortably around these topics, balancing education with respect for a patient’s willingness to disclose. Key Words. Dental education; health care communication; behavioral science. JADA 2020:151(1):33-42 https://doi.org/10.1016/j.adaj.2019.08.015
O
ral health is an important part of a patient’s overall health and functioning. Conditions or diseases, such as arthritis, heart disease, stroke, diabetes, emphysema, and hepatitis C, are associated with a greater number of missing teeth and poorer oral health; diseases may also initially manifest in the oral cavity.1,2 In addition, oral health has been linked with many social and behavioral determinants of health including unemployment, poverty, tobacco use, race or ethnicity, medical status, and dietary habits.3 Socioeconomic status may explain partially the relationship between systemic inflammation and periodontal disease.4 Many adults in the United States report that the ability to pay for services is a major barrier to their receiving regular oral health care.5 Food insecurity, which is related to socioeconomic status, has been associated with caries risk in children.6,7 Behavioral health may also influence oral health; for example, patients with higher depression and anxiety scores tend to have more missing teeth and poor periodontal health.8-10 Furthermore, unhealthy habits, such as tobacco use and high sugar consumption, are related to the global health burdens of periodontal disease, oral cancer, and caries.11 The commonly used term patient-centered care suggests a focus on a disease and may have become inadequate as health care professionals continue to learn about the important roles behavioral health and social determinants play in the patient’s overall health. Patient-centered care may still emphasize a specific disease or problem and may not focus on the patient’s physical or social environment. In contrast, the term person-centered care seems preferable as it puts the person (as opposed to a medical patient) and the family at the center of all decision-making related to health, including oral health.12,13 To fully consider all potential etiologies or contributing factors that may play a role in oral health problems, oral health care providers must be able to discuss sensitive and personal issues with patients. For example, being able to discuss depression and anxiety JADA 151(1)
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Copyright ª 2020 American Dental Association. All rights reserved.
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with patients is important because mental health may impair regular oral hygiene practices.9 Injuries in the oral soft tissues, head, and neck, as well as dental trauma, may be a sign of violent relationships, including child abuse.14,15 The principle Beneficence (“do good”) in the American Dental Association’s Principles of Ethics and Code of Professional Conduct states that dentists have an obligation to recognize the symptoms of abuse and neglect and to report suspected cases to the appropriate authorities on the basis of their local jurisdiction.16 Moreover, the Healthy People 2020 objectives OH-7 and OH-8 aim to increase availability and access to preventative oral health interventions; addressing barriers to care such as stigma and anxiety is critical to reaching these goals.17 However, few oral health care professionals ask patients about the social and behavioral aspects of their health. In addition to feeling uncomfortable with personal questions, dentists may not know how to respond when patients reveal medical and social needs outside of the scope of “dental needs.” For example, Parish and colleagues18 conducted a survey of a nationally representative sample of dentists and found that two-thirds of respondents did not feel their professional role should involve screening for substance abuse. Dentists who had received training on this issue were more likely to screen for substance abuse in practice. Similarly, in a national survey, dentists who perceived that their patients and peers would be accepting were more likely to feel comfortable offering rapid HIV tests in their practice.19 Screening in the dentist office for common health problems that have a larger perceived connection to oral health care, such as heart disease, high blood pressure, HIV, diabetes, and hepatitis, has been found to be accepted by patients in private and dental school settings.20 Dental school patients were more comfortable with these practices than private dental clinic patients.20 This may be because dental school patients have less access to a consistent primary care provider, so they are more comfortable with the dentist performing these screenings. Taken together, the literature suggests that the role of the dentist is shaped by how dentists perceive their own roles in the health care system and by patient perceptions of dentists’ expertise. Little is known about what topics patients feel comfortable discussing with their dentists or dental hygienists. As dentistry has placed an increasing importance on interprofessional collaboration,21 understanding patient perceptions of the dentists’ role in their health care is essential. The objectives of our study were to understand patients’ preferences about and comfort levels in discussing personal medical, behavioral, and social information with their oral health care providers and assess the relationship between demographic factors and patients’ comfort levels in discussing this type of information with oral health care providers.
ABBREVIATION KEY MTurk: Mechanical Turk.
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METHODS This study was approved by the institutional review board of the University of Illinois at Chicago, Chicago, Illinois. Using Qualtrics software, we uploaded a 65-item survey via the Amazon Mechanical Turk (MTurk) to recruit participants. MTurk is an online platform that increasingly is being used to recruit national samples in science research.22 The participants, referred to as “workers,” create a user profile, which is then used to filter available surveys on the basis of eligibility criteria. The online platform then allows participants to sign up for any survey for which they are eligible. Similar to other online programs, the popularity of MTurk has grown in the past decade via word of mouth and social networks, and now many social science surveys are completed in this manner. Researchers are not involved in directly recruiting participants as eligible MTurk users can choose in which studies they participate. MTurk allows researchers to define inclusion and exclusion criteria for participants. Participants in our study were online MTurk workers 18 years or older, residents of the United States, and able to read English. An introductory information sheet advised all participants that the survey was voluntary and their answers would not be linked to their identity. All participants provided informed consent. Each participant received $1.50 for completing the survey. To ensure anonymity, participants were paid separately by MTurk and were not compensated directly via our study. We created the survey on the basis of our experience working with patients in a large, urban, diverse university setting. The survey had 5 sections: demographics, physical health, behavioral health, oral health, and living conditions (Table 1). We conducted a pilot survey of 25 MTurk participants to ensure readability and ease of administration. Participants (N ¼ 387) completed a demographics section about their sex, age, race, ethnicity, sexual orientation, income, and JADA 151(1)
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Table 1. Topics covered in each survey section. SURVEY SECTION
SPECIFIC SURVEY QUESTIONS
Demographics
Age, sex, race and ethnicity, citizenship and immigration status, educational level, marital status, number of children, number of people living in the household, household income, employment status, medical and dental insurance, use of government programs
Physical Health
Dietary habits, weight, medications, frequency of dental visits, breast-feeding practices
Behavioral Health
Depression, anxiety disorder, alcohol or drug abuse, use of psychiatric medications, traumatic or stressful experiences, domestic or interpersonal violence, cigarette smoking, guns in the house, use of seatbelts
Oral Health
Condition of the participant’s dentition, toothbrushing or flossing habits
Living Conditions
Housing problems, home conditions, food problems, family member in jail
Table 2. Original factor analysis. EIGENVALUE
VARIANCE, %
1
FACTOR
11.537
36.054
2
4.414
13.794
3
2.528
7.901
4
1.432
4.476
5
1.203
3.760
6
1.136
3.549
education. They also reported the time frame of their most recent medical and dental visits. Within each section of the survey, participants were asked to perform the following: n rate their comfort level in answering questions about each topic at the dentist’s office, using a Likert scale ranging from 1 (not at all comfortable) through 5 (extremely comfortable); n check as many answers as they wished that followed the question “Please tell us why you would not be comfortable sharing information about these topics with your dentist’s office.” The possible responses were “I don’t like to discuss these private topics with my dentist,” “I am concerned that my answers will be documented in my medical or dental chart,” “I am concerned that my answers will influence my insurance (for example, increased premiums or concerns about having a preexisting condition),” “I don’t believe these questions have anything to do with my teeth or dental treatment,” and “Some other reason”; n choose their preferred method for providing personal information at the dentist. The possible responses were “On a paper form that I fill out myself,” “On a form on the computer that I fill out myself,” “In a face-to-face interview with the dentist,” or “In some other way”; n answer whether any of their health care providers (dentist, medical physician, nurse) had asked about each topic in the past. We collected the data in 2-hour periods during 1 week in 2018. To maximize the variety of respondents, we balanced the periods to represent mornings, evenings, and afternoons, as well as weekdays and weekends. We conducted all analyses using the Statistical Package for the Social Sciences (IBM). Factor analysis To create an overall measure of patient comfort, we included Likert scale questions from all 5 sections of the survey in a factor analysis following standard procedures of scale development.23 We used pairwise deletion of missing data to include as many participants as possible in the factor analysis. Because we hypothesized that the factors would be correlated, we used a principal factors extraction and an oblique (oblimin) rotation. Initially, we conducted an unrestricted factor analysis to discover how many factors were the best fit (Table 2). We then allocated scale items to each factor on the basis of their eigenvalues (Table 3). We eliminated the variable of “weight” from the scale development on the basis of its inability to load onto a single factor via theory or eigenvalues. We added the variable “sex” to factor 3 on the basis of a theoretical conceptualization that it was most similar to the other variables describing
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Table 3. Factor loading of items. FACTOR LOADING (PEARSON CORRELATION) OF ITEMS
ITEM
1
2
3
4
Age
0.102
0.689
0.530
0.028
Sex
0.114
0.582
0.583*
0.001
Race or Ethnicity
0.209
0.410
0.643
0.043
Citizenship or Immigration Status
0.314
0.092
0.732
0.228
Education Level
0.342
0.170
0.806
0.358
Marital Status
0.333
0.268
0.778
0.255
Number of Children You Have
0.410
0.192
0.803
0.338
Number of People Living With You
0.396
0.040
0.766
0.509
Household Income
0.417
0.056
0.557
0.600
Employment Status
0.424
0.228
0.640
0.493
Type of Medical and Dental Insurance You Have
0.147
0.624
0.489
0.049
Use of Government Programs
0.480
0.027
0.466
0.615
Dietary Habits
0.474
0.585
0.272
0.301
Weight†
0.466
0.488
0.238
0.343
Medications
0.514
0.615
0.348
0.176
How Often You Visit the Dentist
0.272
0.734
0.159
0.055
Breast-feeding Practices
0.537
0.080
0.338
0.601
Diagnosed With Depression
0.892
0.111
0.310
0.567
Diagnosed With an Anxiety Disorder
0.887
0.183
0.339
0.492
Diagnosed With Alcohol or Drug Abuse
0.851
0.167
0.367
0.517
Use of Psychiatric Medications
0.850
0.229
0.280
0.481
Traumatic or Stressful Experiences That Might Have Affected You
0.822
0.119
0.242
0.559
Domestic or Interpersonal Violence Experiences You May Have Had
0.800
0.067
0.291
0.649
Cigarette Smoking in Your Household
0.620
0.418
0.396
0.303
Whether There Are Any Guns in Your House
0.563
0.006
0.387
0.758
How Often You Use a Seatbelt While Driving or Riding in a Car
0.558
0.031
0.436
0.651
The Condition of Your Teeth
0.079
0.800
0.125
0.090
Your Toothbrushing or Flossing Habits
0.064
0.783
0.099
0.122
Housing Problems You Have or May Have Had
0.515
0.043
0.211
0.917
Your House Itself
0.508
0.041
0.275
0.922
Food Problems You Have or May Have Had
0.547
0.101
0.207
0.828
You or a Family Member Being Arrested or in Jail or Prison
0.506
0.015
0.200
0.883
* Sex was assigned to factor 3 on the basis of theory. † Weight was removed from the factor analysis.
demographic variables (race, marital status, employment). The figure shows each of the factors and their variables and mean scores. RESULTS Participants (N ¼ 387) in this study were an average (standard deviation) of 37.1 (11.9) years of age. Most were white (79.6%) and women (58.7%). Respondents came from a variety of income brackets and educational levels (Table 4). In addition, just 42.9% had seen their dentist in the past 6 months. Scale development Given that the percentage of variance explained and eigenvalues decreased less after 4 factors, we chose a fixed factor analysis with 4 factors. Factor 1 (mean [M], 2.9 of 5) was named “trauma, stress, 36
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Table 4. Respondents’ demographic information (N ¼ 387). VARIABLE
N (%)
Sex Male
157 (40.6)
Female
227 (58.7)
Other
2 (0.5)
Missing
1 (0.3)
Race and Ethnicity White
308 (79.6)
Black
30 (7.8)
Hispanic
14 (3.6)
Asian or Pacific Islander
24 (6.2)
Multiracial or biracial
7 (1.8)
Other
3 (0.8)
Missing
1 (0.3)
Household Income, $ 0-20,000
55 (14.2)
20,001-60,000
194 (50.1)
60,001-80,000
66 (17.1)
> 80,000
71 (18.3)
Missing
1 (0.3)
Education High school or less
39 (10.1)
Some college
123 (31.8)
College degree
155 (40.1)
Graduate or professional degree
65 (16.8)
Missing
5 (1.3)
Sexual Orientation Heterosexual
345 (89.4)
Bisexual
23 (6.0)
Homosexual
18 (4.7)
Missing
1 (0.3)
History Visiting Dentist 0-6 months ago
166 (42.9)
1 year ago
79 (20.4)
> 1 year ago
140 (36.2)
Missing
2 (0.5)
and coping” and included a number of items related to trauma, mental health, and coping mechanisms (drugs and alcohol). This 7-item factor had a Cronbach a of .925. Factor 2 (M, 4.35 of 5) was named “standard dental questions” and included questions that participants are used to being asked at the dentist, including age, insurance, medications, and toothbrushing habits. This 7-item factor had had a Cronbach a of .829. Factor 3 (M, 4.0 of 5) was termed “demographics” because it included demographic information, such as race and ethnicity, education, number of children, and marriage status. This 8-item factor had a Cronbach a of .878. Factor 4 (M, 2.45 of 5) was named “living and behavioral patterns” because it included information about conditions in which patients live (housing and food insecurity, guns in the house, and others) and behavioral patterns (use of JADA 151(1)
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Table 5. Factor scores by demographic group. VARIABLE
MEAN (STANDARD DEVIATION) SCORE Trauma, Stress, and Coping
Standard Dental Questions
Demographics
Living and Behavioral Patterns
Sex Male
3.00 (1.25)
4.37 (0.63)
3.97 (0.86)
2.61 (1.16)
Female
2.90 (1.13)
4.33 (0.58)
4.04 (0.86)
2.24 (1.09)
Heterosexual
2.96 (1.18)
4.37 (0.59)
4.02 (0.86)
2.47 (1.12)
Bisexual
3.09 (1.20)
4.22 (0.68)
4.08 (0.86)
2.75 (1.16)
Homosexual
2.54 (1.35)
4.44 (0.42)
3.71 (0.72)
2.40 (1.35)
Sexual Orientation
Race and Ethnicity White
2.90 (1.1.6)
4.32 (0.60)
4.02 (0.86)
2.46 (1.13)
Black
3.14 (1.31)
4.49 (0.61)
4.07 (0.81)
2.48 (1.07)
Hispanic
2.75 (1.01)
4.39 (0.60)
3.87 (0.77)
2.33 (1.00)
Asian or Pacific Islander
3.35 (1.35)
4.48 (0.48)
3.49 (1.00)
2.66 (1.16)
Multiracial or biracial
4.06 (0.68)
4.27 (0.43)
4.23 (.052)
3.19 (1.29)
Other
1.67 (0.36)
3.50 (0.33)
4.04 (0.59)
1.89 (0.80)
Table 6. Comfort level of participants disclosing information by method used. METHOD OF DISCLOSURE
GROUP OF QUESTIONS
Paper
Demographic
266 (68.7)
Physical health
263 (67.7)
Behavioral health
250 (64.6)
Oral health
262 (67.7)
Living conditions
223 (57.6)
Demographic
202 (52.2)
Physical health
210 (54.3)
Computer Form
Face to Face
PARTICIPANTS, NO. (%)
Behavioral health
200 (51.7)
Oral health
224 (57.9)
Living conditions
202 (47.8)
Demographic
113 (29.2)
Physical health
137 (35.4)
Behavioral health
127 (32.8)
Oral health
233 (60.2)
Living conditions
141 (36.4)
government programs, breast-feeding, and others). Overall, this factor offers information about the patient’s socioeconomic position, as well as relevant conditions that may affect the person’s health (time in jail or income). This 9-item factor had a Cronbach a of .915. Overall, participants were not comfortable disclosing information on the trauma, stress and coping and living and behavioral patterns factors. Participants were comfortable discussing information on the standard dental questions and the demographics factors. We attempted to assess whether the means for each information comfort scale were different for demographic groups. However, when we examined the means of each factor by demographic group,
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Table 7. Reasons participants prefer not to discuss personal information. REASON
GROUP OF QUESTIONS
Do Not Want to Discuss Private Information
Demographic
97 (25.1)
Physical health
72 (18.6)
Behavioral health Oral health Living conditions Do Not Want Information Documented in Chart
3 (1.0) 153 (40.0) 30 (7.8)
Physical health
12 (3.1)
Behavioral health
61 (15.8) 4 (1.0)
Living conditions
33 (8.5)
Demographic
46 (11.9)
Physical health
11 (2.8)
Behavioral health
38 (9.8)
Oral health Living conditions Do Not Believe Information Is Relevant to Dental Care
147 (38.0)
Demographic
Oral health
Worried How Information May Influence Insurance
PARTICIPANTS, NO. (%)
2 (0.5) 19 (4.9)
Demographic
196 (50.6)
Physical health
146 (37.7)
Behavioral health
238 (61.5)
Oral health Living conditions
1 (0.0) 264 (68.2)
the means appeared too similar to warrant further parametric testing. Table 5 shows mean scores for demographic groups on all 4 factors. Preferences in reporting sensitive information Across the 5 original survey sections (demographics, physical health, behavioral health, oral health, and living conditions), participants were more comfortable sharing information via paper and computer tools rather than in person (Table 6). Although 60% of the participants were comfortable sharing oral health information in a face-to-face interview with a provider, they were less comfortable discussing demographic information, behavioral health, physical health, and their living conditions in face-to-face interviews. The main reason that patients gave about why they objected to providing certain information was that they did not believe the information was relevant to dental treatment (Table 7). For example, many participants did not think their living conditions, behavioral health, or demographics were relevant to dental treatment (68%, 62%, and 51%, respectively). Some participants also indicated that they did not want to discuss private information about living conditions, behavioral health, and demographics with their dentist (40%, 38%, and 25%, respectively). DISCUSSION In this study, we assessed participants’ comfort levels in discussing specific types of information with their dentists. A factor analysis of the survey revealed 4 categories of information that participants’ comfort levels clustered around trauma, stress and coping; standard dental questions; demographics and living and behavioral patterns. As hypothesized, patients are comfortable discussing standard dental questions and relevant demographics in dental settings. Although we were unable to find any demographic differences within each of the information comfort factors, the findings of our study show that participants are less comfortable sharing information about trauma, stress, and coping and living and behavioral patterns than they are sharing information about dental history and typical demographics (Figure). JADA 151(1)
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Factor
1
2
3
4
Mean Score
2.9
4.35
4.0
2.47
Name
Trauma, stress, and coping
Standard dental questions
Demographics
Living and behavioral patterns
Variables
• Depression • Anxiety • Alcohol or drug abuse • Psychiatric medications • Trauma • Intimate partner violence • Cigarette smoking
• Age • Insurance • Dietary • Medications • How often visit the dentist • Condition of teeth • Toothbrushing habits
• Race and ethnicity • Immigration status • Education level • Marital status • Number of children • Number of people living with you • Employment • Sex
• Income • Use of government programs • Breast-feeding • Guns in house • Seatbelt use • Housing problems • Housing condition • Food problems • Jail or prison
Figure. Factor naming and conceptualization. Scores could range from 0 through 5. A score of 5 was “extremely comfortable.” The higher the mean score, the more comfortable people are discussing the topic with their dentist.
Underscoring the sensitive nature of some of the questions, patients preferred paper survey methods of screening compared with face-to-face discussions with a provider or computer questionnaires. Perhaps participants felt that paper surveys were less embarrassing or more anonymous than face-toface discussions. Patients also may have had concerns about how computer screenings would be stored, who would have access to the information, and possible online breaches of confidentiality. It is noteable that 1 of the main objections patients raised to sharing information was that they felt it was too personal or it was not relevant to dental treatment. The results of our study are consistent with previous work that underscored how difficult it is for dentists to discuss personal information with patients. For example, Parish and colleagues24 found that few dentists screen for interpersonal violence on their patient history forms. More than onehalf of dentists also did not know where to refer patients who are experiencing interpersonal violence and did not believe that routine screening should be part of their professional roles.24 This finding and ours are in contrast to aforementioned evidence showing that sensitive topics like intimate partner violence, mental health, and living and behavioral health conditions play an important role in oral health, including caries rates, periodontal disease, and number of missing teeth.6-10 Our findings suggest that part of the reason patients are uncomfortable discussing important information with their dentists is because they do not understand the role of these factors in their oral health. Similar research has found a lack of awareness of oral adverse effects of similarly stigmatized conditions like HIV and diabetes.25 Community education and public health efforts can focus on helping people understand how oral health is related to overall health and behavioral and social conditions.26 Patients may not be aware that medications used to treat mental illness have substantial adverse effects on oral health including xerostomia, dysgeusia, and tardive dyskinesia.27 Similarly, patients may not be aware that social conditions like history of incarceration28 or domestic violence29 have direct implications for oral health such as extended time without oral health care or improperly healed craniofacial fractures. These examples point to the necessity of explaining the link between these sensitive topics and oral health. Finally, dentists need to be provided with more education on how to communicate comfortably around these topics, balancing education with respect for a patient’s willingness to disclose. On a macro level, dental education and professional organizations can encourage dentists and trainees to work on interprofessional health care teams in which they are able to discuss sensitive topics and refer patients to trusted colleagues. Interprofessional collaboration may help change the subjective societal norms of the dentists’ role, with both providers and patients becoming more comfortable discussing sensitive topics. This study is not without limitations. The sample was limited by the MTurk population, and thus we do not know if our sample was representative of the US population as a whole. Workers who sign up for online tasks tend to be more educated and comfortable with 40
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technology and may be more likely to be unemployed than the general population. However, they are more likely to be representative of the population than undergraduate or convenience samples.30 MTurk users also tend to be younger and more educated than the overall population, suggesting that the need for education about oral health may be even greater in clinic-based populations.31,32 Our sample had a low percentage of nonwhite participants. It will be important for future work to sample minority populations, particularly because mistrust of the health care system historically has been greater among certain racial and ethnic subgroups (especially African Americans). A more representative sample may show even higher levels of discomfort with disclosure of sensitive information. The data were also based on self-reports. Furthermore, we used a measure of demographics that combined race and ethnicity, potentially explaining our inability to find a significant effect of that variable. Researchers in future studies could use detailed race and ethnicity measures such as those in the US census. However, we did collect a large sample (N ¼ 387) with significant social and economic diversity. Furthermore, our factor analysis creates a useful tool for understanding which topics patients are most likely to be uncomfortable discussing. Our survey asked participants about what topics they would discuss “at their dentist’s office.” Future studies can explore whether patients would be more or less willing to disclose to a hygienist than a dentist. CONCLUSIONS In an online study of 387 participants, we found that patients may not be comfortable discussing trauma, stress, coping, living conditions, and behavioral patterns with their oral health care providers. This suggests that future public oral health community education should focus on helping patients understand the link between oral health, behavioral health, and living conditions. In addition, dental education should focus on helping current and future oral health care providers feel more comfortable screening for these issues in ways that patients prefer. To our knowledge, our study is the first survey that has sought to understand patient preferences for disclosing personal information to dentist. As health care moves toward a more person-centered approach, this perspective is essential. Finally, our survey did not ask about patients’ comfort in discussing sexuality and sexual behavior with dentists. Future surveys should include this variable, in addition to the other behavioral and environmental variables we examined in this study. n SUPPLEMENTAL DATA Supplemental data related to this article can be found at https://doi.org/10.1016/j.adaj.2019.08.015.
Dr. Raja is an associate professor, Department of Pediatric Dentistry (MC 850), College of Dentistry, University of Illinois at Chicago, 801 S. Paulina St., Chicago, IL 60612, e-mail [email protected]. Address correspondence to Dr. Raja. Dr. da Fonseca is a professor and the head, Department of Pediatric Dentistry, College of Dentistry, University of Illinois at Chicago, Chicago, IL. Ms. Rabinowitz was a student, Department of Applied Psychology, New York University, New York, NY, when the work described in this article was conducted. She is now a graduate student, Department of Psychological Sciences, at Kent State University, Kent, OH.
1. Oral Health in America: A Report of the Surgeon General. Rockville, MD: U.S. Department of Health and Human Services, National Institute of Dental and Craniofacial Research, National Institutes of Health; 2000. 2. Centers for Disease Control and Prevention. Oral Health Surveillance Report: Trends in Dental Caries and Sealants, Tooth Retention, and Edentulism, United States, 1999-2004 to 2011-2016. Atlanta, GA: Centers for Disease Control and Prevention, US Dept of Health and Human Services; 2019. 3. da Fonseca MA, Avenetti D. Social determinants of pediatric oral health. Dent Clin North Am. 2017;61(3):519-532. 4. Gomaa N, Nicolau B, Siddiqi A, Tenenbaum H, Glogauer M, Quinonez C. How does the social “get under
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Disclosure. None of the authors reported any disclosures. Dr. da Fonseca received funding from the Underrepresented Minority Recruitment Funds. The authors would like to thank Ruchi Gupta, BDS, MBA, from the Pediatric Dentistry Department at the College of Dentistry at the University of Illinois at Chicago for her research assistance and Somya Anand, PhD, from the Survey Research Lab at University of Illinois at Urbana-Champaign for help with survey design.
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