ORIGINAL ARTICLE

A Survey of Dentists’ Knowledge and Attitudes With Respect to the Treatment of Scleroderma Patients David Leader, DMD, MPH, Athena Papas, DMD, PhD, and Matthew Finkelman, PhD

Objective: Scleroderma or systemic sclerosis causes dry mouth, a major risk factor for tooth decay, and shrinks the mouth opening, complicating care. A 2011 survey determined that 28% of systemic sclerosis patients have difficulty finding dentists prepared to treat them, and 63% do not recommend their current dentist to other systemic sclerosis patients. We use a survey to gauge dentists’ knowledge and attitudes regarding the care of scleroderma patients. Methods: We conducted an Internet-based survey of all 4465 members of the Massachusetts Dental Society to determine their knowledge and attitudes of treating systemic sclerosis patients. Data were analyzed using SPSS and Qualtrics research suite. Results: Surveys were accessed by 351 dentists and completed by 269. Responses were primarily from Eastern Massachusetts (80%), but represented the Boston area less than expected. Most dentists believed they have an ethical responsibility to treat patients who have scleroderma (93%). More than half of dentists believed that in not knowing about systemic sclerosis they might harm a patient (51%). If contacted by a patient who has scleroderma, 50% of dentists would gather information on the disease or the patient’s condition. Dentists who felt prepared (71%) were more likely to correctly answer questions related to diagnosis and classification of scleroderma than those who felt unprepared (P = 0.004, Mann-Whitney U test). Conclusion: Results indicate the potential value of creating a health communication effort targeting oral health providers to improve scleroderma patient satisfaction and access to care. Key Words: scleroderma, scleroderma and oral health, access to care, systemic sclerosis, scleroderma and dentist, access to oral health care (J Clin Rheumatol 2014;20: 189Y194)

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any scleroderma patients have difficulty finding a dentist who will accept them for care,1 which complicates the severe impact of scleroderma on oral health. Scleroderma affects oral health by reducing the embrasure (the circle of the lips) and the maximum interincisal measure (the distance between the upper and lower incisors when opening). The small mouth opening of many scleroderma patients complicates dental treatment by professionals and personal oral hygiene including brushing and flossing. Some patients even find it difficult to insert and remove full and partial dentures. Sclerodactyly, the characteristic effect of scleroderma on fingers, complicates oral hygiene; patients may require adaptations or assistance to brush and floss their own teeth. As is the case with other rheumatic diseases such as

From the Department of Diagnosis and Health Promotion, Tufts University School of Dental Medicine, Boston, MA. The authors declare no conflict of interest. No financial support was received for this study. Correspondence: David Leader, DMD, MPH, Department of Diagnosis and Health Promotion, Tufts University School of Dental Medicine, Fourth Floor, One Kneeland St, Boston, MA. Email: [email protected] Copyright * 2014 by Lippincott Williams & Wilkins ISSN: 1076-1608/14/2004Y0189 DOI: 10.1097/RHU.0000000000000102

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rheumatoid arthritis, systemic lupus erythematosis, and Sjo¨gren’s syndrome, about 70% of scleroderma patients have xerostomia (dry mouth).2 Xerostomia is an extreme risk factor for caries and a risk factor for periodontal disease. Adverse effects of the many medications taken by scleroderma patients may affect oral health such as xerostomia, dysgeusia (change in taste), and stomatitis. Furthermore, scleroderma may affect the gastrointestinal tract causing unremitting gastroesophageal reflux disease, another extreme risk factor for tooth decay and erosion. Dental training includes medical treatment of enamel hypocalcification due to xerostomia with prescription fluoride applications, muscarinic agonists (pilocarpine and cevimeline), and highly concentrated calcium applications. Surgical treatment of tight mucosa can help patients regain tongue and lip mobility. Scleroderma patients benefit from speaking with dentists and dental hygienists about adaptive appliances and techniques for oral hygiene. However, a 2011 survey of 350 scleroderma patients established that this group of patients has difficulty accessing oral health care.1 Almost a third of respondents had an urgent need for dental care at the time of that survey (30%). More than a quarter of respondents (28%) reported difficulty finding a dentist to treat them. More than a quarter of respondents felt that their condition limited their dentist’s ability to care for them. Most distressingly, 63% would not recommend their dentist. These findings confirmed that there is a need for better access to oral health care for scleroderma patients. Whereas scleroderma patients report contacts with dentists, there was a suggestion that the access to care issue is due to dentists’ knowledge and/or attitudes about the disease. The objective of this survey was to understand the dentist’s perspective on treating patients with scleroderma. Do dentists believe that they have a responsibility to treat scleroderma patients? Do dentists feel prepared to treat scleroderma patients? Do dentists believe that treating scleroderma patients without knowledge of the disease might cause harm to the patient? Do dentists feel that treating scleroderma patients might be time consuming?

MATERIALS AND METHODS Review of existing literature did not uncover research specifically related to determining knowledge and attitudes of dentists with respect to the treatment of patients with scleroderma. Research that examined dentists’ attitude, knowledge, and behavior with respect to the treatment of stigma-free conditions such as temporomandibular dysfunction3 and smoking cessation4,5 touched on some of the issues that appear to affect the relationship between scleroderma patients and dentists. However, these studies did not challenge dentists with questions about their sense of responsibility. There are several studies of patients’ and dentists’ attitudes, knowledge, and experience related to oral health care of HIV-infected patients.6Y11 A survey by McCarthy et al12 to determine the knowledge and attitudes of dentists with respect to the treatment of HIV/AIDS patients addressed similar issues that face scleroderma patients. The survey designed by McCarthy et al was adapted to service this

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study by adjusting some of the demographic questions to be specific for Massachusetts, removing questions about HIV, adding questions about scleroderma, and by editing attitude questions. The survey was reviewed with experts and members of the subject population before being loaded into Qualtrics’ (Provo, UT) online survey software.i Inclusion criteria were simply the members of the Massachusetts Dental Society (MDS) who have provided their e-mail addresses to the society. This included 78% of the dentists who practice in Massachusetts. The e-mail was broadcast twice, a week apart, to 4465 members of the MDS by their staff. The survey was active online from February 6, 2013, to February 19, 2013. No compensation was offered for participation in this study. The MDS’s Council on Access Prevention and Interprofessional Relations sent out e-mails with individual survey links to 4465 members of the MDS. Early in the project, a power calculation was done using nQuery Advisor.13 Assuming an odds ratio of 4.1, a sample size of n = 25 individuals who feel unprepared to treat patients with scleroderma/systemic sclerosis and a sample size of n = 85 who feel prepared to treat patients with scleroderma/systemic sclerosis were adequate to obtain a type I error rate of 5% and a power of 80%. The Tufts Medical Center/Tufts University Health Sciences Institutional Review Board granted an exemption as the intervention did not have access to personal identifiers of MDS members. This was important as one of the survey questions, ‘‘I already treat or would treat a patient with the following conditionsI HIV/AIDS,’’ relates to illegal activityVdiscrimination against a protected group. The Qualtrics e-mail manager generated unique anonymous links for each participant. Each subject would be able to access only 1 survey. This survey included 3 questions to test dentists’ basic knowledge of scleroderma; the first asked which of 4 diseases is most like scleroderma. Scleroderma is a rheumatic disease. Many rheumatic diseases cause a reduction in exocrine gland secretions including saliva and tears. This affects about 70% of scleroderma patients2 and is the hallmark sign of Sjo¨gren’s syndrome, the correct answer. The next knowledge question listed 3 hallmarks of scleroderma: thickening of the skin, limited opening of the mouth, and xerostomia. ‘‘All of the above’’ was the correct answer. The last knowledge question asks which sign of scleroderma is uniquely identifiable by dentists. Generalized widening of the periodontal ligament is a striking finding on dental radiographs, which is pathognomonic for scleroderma14 (Figure). Dentists are the only health care providers able to identify this finding. The answers to the 3 knowledge questions were recoded to identify correct answers with a value of 1 and incorrect answers with a value of 0. Values for the 3 answers were totaled for a score of 0 to 3. Knowledge scores were cross tabulated with the feeling of preparedness. The final question asks respondents if they would like to learn more about scleroderma and, if so, their preferred methods of learning. Statistical analyses were carried out using SPSS,15 Qualtrics, and Microsoft Excel 2013.16

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accessed and 269 (6.0%) completed the survey entirely or partially. Demographic data indicated that the survey was less representative of the Metro Boston area and more representative of the area around and including Worcester, MA, and cities and towns northeast of Boston. The number of surveys completed, 269, represented more than double the number suggested in the power calculation; 185 respondents felt prepared to treat scleroderma patients, and 76 did not. The mean completion time for the survey was 5:20 minutes. The survey questions and simple statistics are listed in Table 1. Age distribution was pretty even, ranging from 20% to 28% in each of 4 age groups (G30, 40Y49, 50Y59, and Q60 years). Nearly two thirds of practices were located in communities with a population of 10,000 to 99,000. Eighty percent of respondents practice in eastern Massachusetts, which compares to 71.8% of the membership of the MDS reported from eastern Massachusetts districts. Comparing the regional distribution of respondents to the full membership of the MDS, we note that metropolitan Boston is less well represented in our results. Cities and towns north of Boston (northeastern Massachusetts) and Worcester/central Massachusetts are better represented than expected. More than 91% of respondents felt that dentists have a responsibility to treat scleroderma patients. This feeling was greater than 90% across age groups except for dentists aged 50 to 59 years (89%). Dentists tended to feel a responsibility to treat scleroderma patients if they lived in a city with a population of 100,000 to 500,000 and lived north of Boston. Respondents in small towns with a population of less than 10,000 tended to feel less responsible to care for scleroderma patients. Please note that these tendencies were not statistically significant. A majority of respondents felt prepared to treat patients who have scleroderma (71%). However, younger dentists tended to feel less well prepared. Respondents were asked about their experience treating patients with a variety of conditions and diseases. In the question, ‘‘I already treat or would treat patients with the following conditions,’’ all conditions listed were answered 94% or more affirmatively including rheumatoid arthritis and systemic lupus erythematosis (both rheumatic diseases), heart disease, diabetes, sexually transmitted disease, and HIV/AIDS. About half (51%) of respondents were concerned that in not knowing how to care for a patient with scleroderma they might cause harm. This relates to another question; when asked how the dentist would respond to a contact from a patient with scleroderma, 50% said that they would gather information on scleroderma or the patient’s condition. Similarly, 51% felt that their staff would know how to assist in the treatment of scleroderma patients. Only 2% indicated a concern that the treatment of chronically ill patients might offend other patients.

RESULTS Of the 4465 survey links sent by the Council on Access Prevention and Interprofessional Relations, 351 dentists (7.9%) i

(the survey results and some data analysis for this article were generated using Qualtrics software Version 41859 of the Qualtrics Research Suite, Copyright * 2013 Qualtrics. Qualtrics and all other Qualtrics product or service names are registered trademarks or trademarks of Qualtrics, Provo, UT. http://www.qualtrics.com).

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FIGURE. Panoramic radiograph of a scleroderma patient. * 2014 Lippincott Williams & Wilkins

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TABLE 1. Survey Questions and Answers Question 1. Age group, y (nonresponders)

2. Years since graduation

3. Population of city or town where primary practice is located

4. Geographic region where practice is located (nonresponders)

5. I have an ethical responsibility to treat patients with scleroderma/systemic sclerosis. 6. I feel prepared to treat a patient with scleroderma/systemic sclerosis. 7. My staff would know how to help me care for a patient with scleroderma/systemic sclerosis. 8. I am concerned that in not knowing how to care for someone who has scleroderma/systemic sclerosis I might harm them. 9. Treating a patient with scleroderma/systemic sclerosis might be time consuming. 10. If I were contacted by a patient who has scleroderma, I would

11. I am concerned that treating medically complex patients might offend other patients. Prompt for questions 12 to 17: I have or would treat patients who have the following diseases or conditions: 12. Rheumatoid arthritis

Answer

Response

%

e39 40Y49 50Y59 60+ Total 0Y9 10Y19 20Y29 30Y39 940 Total G10,000 10,000Y99,999 100,000Y500,000 9500,000 Total Metro Boston North of Boston South Shore, Cape Cod Worcester area, central Massachusetts Springfield area, Western Massachusetts Total Disagree Agree Total Disagree Agree Total Disagree Agree Total Disagree Agree Total Disagree Agree Total Treat the patent. Refuse to treat the patient. Gather more information on scleroderma or on the patient’s condition. Refer the patient. I don’t know what I would do. Total Disagree Agree Total

65 (630) 55 (754) 73 (903) 71 (1146) 264 (3433) 55 48 66 63 34 266 18 161 44 37 260 81 (1506) 70 (680) 57 (781) 31 (361) 22 (369) 261 (3697) 19 244 263 76 185 261 128 136 264 127 131 258 76 188 264 120 0 133 7 5 265 259 5 264

3 2 100 98 2 100

Yes No Total

260 5 265

98 2 100

24.9 20.8 27.7 26.9 100

(18.4) (22.0) (26.3) (33.4) (100) 21 18 25 24 13 100 7 62 17 14 100 31 (40.7) 27 (18.3) 22 (21.1) 12 (9.8) 8 (10.0) 100 (100) 7 93 100 29 71 100 48 52 100 49 51 100 29 71 100 45 0 50

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TABLE 1. (Continued) Question 13. Heart disease (if cleared by their physician)

14. Systemic lupus erythematosis

15. Sexually transmitted disease.

16. Types I and II diabetes

17. HIV/AIDS

Knowledge questions follow: 18. Scleroderma/systemic sclerosis is most like which of the following?

19. Hallmarks of scleroderma/systemic sclerosis include

20. Dentists may be the first to suspect scleroderma/systemic sclerosis due to

21. I would like to know more about scleroderma/systemic sclerosis. Please choose all that apply. (95.9% chose at least 1.)

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Response

%

Yes No Total Yes No Total Yes No Total Yes No Total Yes No Total

262 3 265 247 15 262 250 12 262 264 1 265 246 15 261

99 1 100 94 6 100 95 5 100 100 0 100 94 6 100

3 121 85 20 33 262 5 4 3 251 2 265 16 72 49 21 104 262 129

1 46 32 8 13 100 2 2 1 95 1 100 6 27 19 8 40 100 50

192 115 169 47

74 45 66 18

Shingles Sjo¨gren syndrome Ectodermal dysplasia Multiple sclerosis I don’t know Total Thickening of the skin Limited opening of the mouth Xerostomia All of the above None of the above Total Enamel erosion A high, unexplained caries rate Unusual radiographic findings Increased pain sensation I don’t know Total I would attend a lecture/workshop for Continuing Education credit. I would read an article in print. I would watch a training video. I would go to a Web site. I would sign up with the Scleroderma Foundation as an interested provider.

Knowledge question 1, which asked respondents to identify the disease that is most similar to scleroderma, was answered correctly by 53.1% of the respondents who said that they felt prepared to treat scleroderma patients. Only 31.6% of those who did not feel prepared answered correctly. W2 analysis demonstrated that this difference was significant (P = 0.002). The next knowledge question listed 3 hallmarks of scleroderma: thickening of the skin, limited opening of the mouth, and xerostomia. Respondents who chose ‘‘all of the above’’ were correct. Nearly all respondents (95%) answered knowledge question 2 (identify hallmarks of scleroderma) correctly. Respondents who felt prepared were significantly more likely to answer this question correctly (96.7% vs 90.8%; P = 0.047).

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The last knowledge question, ‘‘Identify a sign of scleroderma that is uniquely identifiable by dentists,’’ had the smallest percentage of correct answers (19%). Respondents who felt prepared to treat scleroderma patients were more likely to answer correctly (21% vs 14.5%). Although this is similar to the difference demonstrated in the previous 2 knowledge questions, the difference in this case was not significant. Cross tabulation of feeling prepared and the score of the 3 knowledge questions added together produced statistically significant results (Table 2); 13.5% of the respondents who felt prepared recorded a perfect score of 3 compared with 1.3% of those who did not feel prepared. In general, dentists who felt prepared (71%) were more likely to answer knowledge * 2014 Lippincott Williams & Wilkins

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TABLE 2. Cross TabulationVFeeling Prepared Versus Knowledge Score No. of Correctly Answered Knowledge Questions I feel prepared to treat scleroderma patients.

No Yes

Total

Count % Count % Count %

0

1

2

3

Total

5 6.6% 5 2.7% 10 3.8%

39 51.3% 75 40.5% 114 43.7%

31 40.8% 80 43.2% 111 42.5%

1 1.3% 25 13.5% 26 10.0%

76 100.0% 185 100.0% 261 100.0%

questions correctly than those who felt unprepared (P = 0.004, Mann-Whitney U test). Similarly, cross tabulation of question 9, ‘‘I am concerned that in not knowing how to care for someone who has scleroderma/systemic sclerosis I might harm them,’’ to the knowledge questions using Fisher’s exact test demonstrated a statistically significant relationship between correct answers on questions 19 (comparison to other diseases, P = 0.045) and 20 (hallmarks of scleroderma, P = 0.001), whereas there is no significant difference on question 21 (‘‘Dentists may be the first to suspect scleroderma/systemic sclerosis due to’’; P = 1.0). This relationship implies that dentists who know more about scleroderma are more likely to choose to treat scleroderma patients. With respect to the last question, ‘‘I would like to know more about sclerodermaI,’’ most respondents chose at least 1 method (95.9%).

DISCUSSION Many scleroderma patients report that they have difficulty obtaining professional oral health care, and most are not satisfied with the care they receive.1 This survey illuminates the problem from the dentists’ perspective. In this survey, 71% of dentists reported that they felt prepared to treat scleroderma patients, and 51% felt that they might cause harm to a scleroderma patient because of insufficient knowledge. The level of knowledge of dentists who felt prepared to treat scleroderma patients was better than that of dentists who did not feel prepared. Therefore, increased knowledge is associated with an increased feeling of preparation. We believe that this increased feeling of preparation translates into an increased level of acceptance of scleroderma patients in practice. Readers should be aware of a range of biases in this survey. For example, the response rate of 6% indicates that the results of this survey are likely to be subject to volunteer bias.17 Volunteers are likely to be better educated and more involved than nonvolunteers. Respondents were members of the MDS. It is possible that members of a professional organization are different in some respects from nonmembers. However, the MDS represents 80% of dentists who practice in the Commonwealth of Massachusetts. That this survey was limited to Massachusetts is a concern. Similar to the population of Massachusetts, respondents were mainly from the eastern end of the state. There is a major scleroderma center at Boston Medical Center and a concentration of cases in South Boston. The headquarters of the Scleroderma Foundation in Danvers, MA, is in the region labeled ‘‘North of Boston,’’ a region that was more highly represented in this survey than in the source population. Respondents would be expected to be more experienced and educated on scleroderma average for dentists in the United States. * 2014 Lippincott Williams & Wilkins

Reporting bias occurs when the subject answers in the manner that he/she believes is most socially acceptable.17 This type of bias is especially likely in this survey as an answer to 1 question, ‘‘Have you or would you treat a patient with the following conditions: HIV/AIDS.’’ Discrimination against patients infected with HIV/AIDS is a violation of state and federal statute. Even so, 15 subjects responded negatively; they have not or would not treat a patient with this condition. Potential bias considered, the results of this survey demonstrate that many dentists lack basic knowledge of scleroderma, and that lack of knowledge is a source of discomfiture. The results of this survey demonstrate a positive relationship between knowing about scleroderma and feeling prepared to treat scleroderma patients. Therefore, it is likely that informing dentists about scleroderma will result in improved care and increasing access to oral health care. Based on the results of this survey, the Diffusion of Innovation model predicts that the treatment of scleroderma patients is an innovation that would disseminate easily through the dental profession. The Diffusion of Innovation model aids in the understanding and planning of the dissemination of new information, ideas, and techniques. This model predicts that the rate at which subjects adopt new behaviors varies, depending on characteristics of the target audience members and the innovation. Important characteristics of an innovation include relative advantage, the degree to which it is perceived to be better than what it supersedes, compatibility (consistency with existing values, past experiences, and needs), complexity (difficulty of understanding and use), trialability (the degree to which it can be experimented with on a limited basis), and observability (the visibility of its results).18 The survey validates compatibility and relative advantage of this innovation. Dentists believe that it is their responsibility to treat scleroderma patients. About half of respondents believe that treating scleroderma patients without knowledge of the disease may harm the patient. That 95.9% of respondents expressed a desire to learn about scleroderma reveals that they anticipate the relative advantage of understanding scleroderma and how to treat scleroderma patients. Providing a variety of strategies to learn about scleroderma and oral health reduces complexity for providers. That dentists may choose to treat a scleroderma patient and then may refer them to another dentist establishes trialability. Improvements to the patient’s health and well-being are observable results. Scleroderma patients report challenges obtaining oral health care. Dentists feel an obligation to treat this class of chronically ill patients. However, dentists appear to need and want training and support. Interpretation of this survey through the Diffusion of Innovation model predicts that dentists will be receptive to a thorough communication plan designed to improve knowledge www.jclinrheum.com

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of scleroderma. Increasing knowledge of scleroderma by dentists will result in improved access to and satisfaction with oral health care for scleroderma patients. REFERENCES 1. Phillis D, Leader D, Tao L. The effectiveness of dentists treating patients with scleroderma. 2010Y2011 Research Abstracts, Tufts University School of Dental Medicine. Boston, MA: Dental Research Administration, Tufts University School of Dental Medicine; 2011. 2. Leader DM. Scleroderma and dentistry: every dentist is a scleroderma specialist. J Mass Dent Soc. 2007;56:16Y19. Summer. 3. Resche L, Truelove L, Dworkin S. Temporomandibular disorders: a survey of dentists’ knowledge and beliefs. JADA. 1993;124:90Y94. Available at: http://www.jrheum.org/content/39/4/784. 4. Albert D, Severson H, Gordon J, et al. Tobacco attitudes, practices, and behaviors: a survey of dentists participating in managed care. Nicotine Tob Res. 2005;7:S9YS18. 5. Secker-Walker R, Solomon L, Hill H. A statewide survey of dentists’ smoking cessation advice. JADA. 1989;118:37Y40. 6. McCarthy GM, MacDonald JK. Gender differences in characteristics, infection control practices and attitudes related to HIV among Ontario dentists. Community Dent Oral Epidemiol. 1996;24:412Y415. 7. McCarthy GM, Haji FS, Mackie ID. Attitudes and behavior of HIV-infected patients concerning dental care. J Can Dent Assoc. 1996;62:63Y69.

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8. Raphael KG, Kunzel C, Sadowsky D. Differences between Asian-American and white American dentists in attitudes toward treatment of HIV-positive patients. AIDS Educ Prev. 1996;8:155Y164. 9. Robinson P, Zakrzewska JM, Maini M, et al. Dental visiting behaviour [sic] and experiences of men with HIV. Br Dent J. 1994;176:175Y179. 10. Robinson PG, Croucher R. Access to dental careVexperiences of men with HIV infection in the United Kingdom. Community Dent Oral Epidemiol. 1993;21:306Y308. 11. Terry SD, Jones JE, Brown RH Dental-care experiences of people living with HIV/AIDS in Aotearoa, New Zealand. N Z Dent J. 1994;90:49Y55. 12. McCarthy G, Koval J, MacDonald J. Factors associated with refusal to treat HIV-infected patients: the results of a national survey of dentists in Canada. Am J Public Health. 1999;89:541Y545. 13. Elashoff J. nQuery Advisor [computer program]. Version 7.0. Farmers Cross, Cork, Ireland: Statistical Solutions; 2007. 14. Bhaskar SN. Synopsis of Oral Pathology. St Louis, MO: Mosby; 1981. 15. IBM SPSS Statistics for Windows [computer program]. Version 19.0. Armonk, NY: IBM Corp; 2010. 16. Microsoft Excel [computer program]. Version 15.0 (Part of Microsoft Office Professional Edition), Redmond, WA: Microsoft; 2013. 17. Oleckno W. Epidemiology: Concepts and Methods. Long Grove, IL: Waveland Press, Inc; 2008. 18. Clark R. A primer in diffusion of innovations theory [Web site]. 1999. Available at: http://www.rogerclarke.com/SOS/InnDiff.html. Accessed May 4, 2013.

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A survey of dentists' knowledge and attitudes with respect to the treatment of scleroderma patients.

Scleroderma or systemic sclerosis causes dry mouth, a major risk factor for tooth decay, and shrinks the mouth opening, complicating care. A 2011 surv...
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