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General Dentists Perceptions of Educational and Treatment Issues Affecting Access to Care for Children with Special Health Care Needs Paul S. Casamassimo, D.D.S., M.S.; N. Sue Seale, D.D.S., M.S.D.; Kelley Ruehs, D.D.S. Abstract: This study analyzed a data subset of a national survey of general dentists conducted in 2001 to determine their overall care of children with special health care needs (CSHCN). In the survey, dentists were asked to respond to questions in the following areas: did they provide care for CSHCN (children with cerebral palsy, mental retardation, and those who are medically compromised); what were their perceptions of the training they received in dental school related to CSHCN; what was their interest in additional training for CSHCN; and what factors influenced their willingness to provide care for CSHCN? Only about 10 percent see CSHCN often or very often, and only one in four respondents had hands-on experience with these patients in dental school. Postgraduate education in general practice or advanced general dentistry residency had no effect on willingness to care for CSHCN. Older dentists, those accepting Medicaid for all children, and those practicing in small communities were more likely to see CSHCN. Dentists willing to see CSHCN also were more likely to perform procedures associated with special needs and underserved child populations including pharmacologic management and stainless steel crowns. Dentists with hands-on educational experiences in dental schools with CSHCN were less likely to consider such factors as level of disability and patient behavior as obstacles to care and were more likely to desire additional education in care of CSHCN. Dr. Casamassimo is Professor and Chair, Section of Pediatric Dentistry, The Ohio State University; Dr. Seale is Regents Professor and Chair, Department of Pediatric Dentistry, Baylor College of Dentistry; and Dr. Ruehs is in private practice in Dallas, Texas. Direct correspondence and requests for reprints to Dr. N. Sue Seale, Department of Pediatric Dentistry, Baylor College of Dentistry, P.O. Box 660677, Dallas, TX 75266-0677; 214-828-8131 phone; 214-828-8132 fax; sseale@tambcd.edu. This study was supported by the American Academy of Pediatric Dentistry, the American Dental Association, and the American Dental Education Association. Submitted for publication 9/15/03; accepted 11/19/03 The U.S. Surgeon General has identified children with special health care needs (CSHCN) among those groups who are experiencing difficulty gaining access to dental care in the United States. 1 Newacheck et al. 2 recently reported dental care access a major concern of parents of CSHCN in this country, validating the Surgeon General s observations. As far back as three decades, reports in the dental literature noted dentists reluctance to care for disabled populations, suggesting that practitioners experience numerous obstacles to care of the disabled ranging from low reimbursement to inadequate dental school training. 3 In the mid-1980s, curriculum guidelines were established to assist dental education in providing instruction about the needs of special needs patients. 4 These curriculum guidelines were issued a decade after a pilot program, funded by the Robert Wood Johnson Foundation, to train dental students to care for the handicapped population; this program had positive, but limited results. 5 The shift to a competency-based education process in dentistry in the 1990s brought with it changes in the exposure of dental students to the disabled population. A study by Romer et al. 6 indicated that, in 2000, dental students were receiving very limited educational experiences in the care of the disabled and those experiences varied widely in terms of didactic, clinical, and hands-on mix. The American Academy of Pediatric Dentistry (AAPD) conducted a survey of approximately 5,000 general dental practitioners in the summer of 2001 to learn more about the care of children in their practices, in response to a resolution by the American Dental Association (ADA) House of Delegates in 2000. 7 Included in the survey was a series of questions about special needs patients. Specifically, general dental practitioners were asked: did they provide care for CSHCN (children with cerebral palsy, mental retardation, and those who are medically compromised); what were their perceptions of the training they received in dental school related to CSHCN; January 2004 Journal of Dental Education 23

what was their interest in additional training for CSHCN; and what factors influenced their willingness to care for CSHCN? An analysis of these data to determine the current availability of dental care provided to CSHCN by the general dentistry practicing community provides a baseline for future planning and educational change. Therefore, the purpose of this report is to present the analysis of this CSHCN-related data subset as it relates to care by general dental practitioners and to examine educational and environmental factors that may affect general dentists practice patterns related to children with special needs. Materials and Methods A random sample of 4,970 general practitioners, chosen by the ADA survey center from the ADA s database and selected to be representative of the nine ADA regions, served as the study population. The survey methodology used to collect responses is described in depth elsewhere. 8 Responses from 1,251 general dentists concerning their practice patterns with CSHCN were available for an adjusted response rate of 24 percent. A comparison of demographic data available from the ADA database from responders and nonresponders indicated no significant differences between the two groups. Questions about respondents demographic data included in this analysis were: year of graduation from dental school; additional training from an accredited postdoctoral general dentistry program including advanced education in general dentistry (AEGD) or general practice residency (GPR); and primary private practice location. Questions concerning respondents practice patterns with children with the special needs of cerebral palsy, mental retardation, and medical compromise included inquiries about whether practitioners treated this category of patients, how they were trained in dental school to provide care for CSHCN, and whether they desired additional training to treat CSHCN. For the question that asked whether they treated CSHCN, respondents were asked to use a 5-point Likert-type scale: Very Often, Often, Sometimes, Rarely, or Never. For dental school educational experiences, respondents used a scale consisting of: Hands-On/Lecture, Lecture Only, or None. To indicate their attitude about the need for additional training, respondents used a scale consisting of: Very Desirable, Desirable, Somewhat Desirable, or Not Desirable. A question asked respondents to identify to what degree various factors were perceived to be a barrier to their willingness to see CSHCN. For each potential barrier, they could choose high, medium, low, or no as ratings. Respondents were asked how frequently they performed specific procedures including use of immobilization devices, stainless steel crowns, and atraumatic restorative treatment (ART). Respondents were asked whether they restore teeth in children one to three years of age and if they use different forms of pharmacologic behavior management. Their willingness to treat non-special needs children funded by Medicaid of all ages and with all degrees of caries was also included in the data set. Responses to these questions were reported as frequencies and percentages. Using Chi-squared analyses, respondents answers to how frequently they treated each of the categories of special needs patients were compared with their responses to 1) year of dental school graduation; 2) practice location; 3) attendance in a GPR or AEGD program; 4) how frequently they perform procedures including use of immobilization devices, stainless steel crowns, nitrous oxide:oxygen sedation alone, conscious sedation alone, and the combination of the two; 5) their willingness to treat non-special needs children funded by Medicaid of all ages; 6) how they were educated in dental school about treatment of CSHCN; 7) their desire for additional training about treatment of CSHCN; and 8) how they perceived barriers to their willingness to provide care to CSHCN in general. Responses of Very Often and Often were combined for these comparisons as were the answers of Rarely and Never for purposes of this analysis. Responses to how practitioners were educated in dental school about treatment of CSHCN were additionally compared with 1) year of graduation from dental school; 2) their desire for additional training about treatment of CSHCN; and 3) how they perceived specified issues as barriers to their willingness to provide care to CSHCN in general. Responses to how the practitioners perceived various factors as barriers to willingness to provide care to CSHCN were compared with their responses about whether they had attended a GPR or AEGD program. A significance level of p<0.05 was chosen for all comparisons. 24 Journal of Dental Education Volume 68, Number 1

Table 1. Responses about how frequently practitioners treat disabled children, how they were educated in dental school to treat disabled children, and their desire for additional training (Responses expressed as percentages) I do this procedure Dental school I desire in my practice education was more training (N=1237) (N=1157) (N=1133) VO/O S R/N HL LO N VD/D SD ND Cerebral Palsy 6 19 68 23 47 23 41 23 30 Mental Retardation 10 32 52 27 46 19 41 22 29 Medically Compromised 10 34 50 26 48 18 43 21 28 VO/O = Very Often/Often HL = Hands-on/Lecture VD/D = Very Desirable/Desirable S = Sometime LO = Lecture/Lab Only SD = Somewhat Desirable R/N = Rarely/Never N = None ND = Not Desirable Results Responses about how frequently practitioners see CSHCN, how they were educated in dental school to treat these patients, and their desire for additional training are summarized in Table 1. Only about 10 percent of the general practitioners stated they saw CSHCN Very Often or Often. Nearly 70 percent rarely or never saw children with cerebral palsy. Only about one-fourth had hands-on educational experiences with CSHCN in dental school. Respondents answers about their desire for additional training indicate that greater than 40 percent found additional training pertinent to treating CSHCN very desirable or desirable. General dentists perceptions of barriers to their willingness to see disabled children are summarized in Table 2. By far, the greatest barrier was patient behavior, with over 60 percent of respondents identifying it as a high-level barrier. Chi-square analyses indicated no association between the year a practitioner graduated from dental school and willingness to treat CSHCN. The size of the community of the general practitioner affected access to care for CSHCN. General dentists who practice in a community with a population <20,000 were significantly more likely to see mentally retarded (p<0.01) and medically compromised (p<0.05) children often or very often. Respondents participation in GPR or AEGD programs had very little effect in increasing access for CSHCN. There was no difference between those general practitioners with and without postgraduate general dentistry training in their willingness to treat CSHCN. The only difference was that practitioners with GPR training were significantly less likely (p<0.05) to perceive the patients level of disability or the patients behavior as barriers to their willingness to see CSHCN. The frequency with which practitioners reported seeing CSHCN significantly affected the types of dental procedures they performed, whether they saw non-special needs patients funded by Medicaid, their desire for additional training about treating special needs patients, and what barriers they perceived to treating special needs patients. Those practitioners who report they see CSHCN often or very often reported that they performed several dental procedures significantly more often than general practitioners who rarely or never saw CSHCN. These procedures included stainless steel crowns (CP and MR p<0.01, MC p<0.05) and nitrous oxide:oxygen analgesia, oral sedation, and the combination of these two agents (p<0.001) (see Table 3). There were no Table 2. Practitioners perceptions of issues as barriers to their willingness to treat disabled children (N=1185) (Responses expressed as percentages) High Med Low No Patient s behavior 64 20 6 4 Level of disability 45 28 12 8 Level of disease 33 32 17 12 My level of training 30 35 21 7 Office staff training 24 34 23 13 Availability of funds 23 32 27 12 January 2004 Journal of Dental Education 25

differences among the practitioners for the use of immobilization devices. There was a significant association between general practitioners willingness to see CSHCN and their willingness to be a Medicaid provider for children in general. Those who reported that they treated patients with special needs often/very often were significantly more likely (p<0.001) to often/very often see Medicaid patients of all ages (<3 years to 15 years). Those practitioners who reported often/very often treating CSHCN were significantly more likely to report they desired additional training in treating these special needs children (p<0.0001). They were also significantly less likely to perceive the patients level of disability, dental disease, behavior, their staffs level training, or their own training level as barriers to their willingness to treat CSHCN as compared with general practitioners who rarely or never saw CSHCN (p<0.0001). The level of significance for availability of funding as a barrier was less uniform among the three types of special needs patients examined (CP p<0.05, MR p<0.001, MC p<0.0001). These results are summarized in Table 4. The types of educational experiences general practitioners reported receiving in dental school about treating CSHCN (HL = hands-on/lecture, LO = lecture only, N = none) significantly affected whether they treat CSHCN, how they perceived different factors as barriers to their willingness to provide care, and whether they desired additional training in the care of CSHCN. Practitioners who reported that they received educational experiences with CSHCN in dental school that were both hands-on and lecture (HL) were significantly more likely to report that they often or very often treated these patients (CP p<0.0001; MR p<0.01; MC p<0.0001). Practitioners who received no CSHCN educational experiences in dental school were significantly more likely to report that they never treated special needs patients (CP p<0.0001; MR p<0.01; MC p<0.0001). The impact of types of educational experiences in dental school on practitioners perceptions of barriers was not uniform for the three disabilities examined. Those who had both hands-on and lecture (HL) experiences in treating cerebral palsy and medically compromised patients were significantly less likely to perceive the patients level of disability, level of Table 3. General practitioners who often or very often treat disabled children are more likely to often or very often perform the following procedures as compared with general practitioners who rarely or never treat disabled children. Cerebral Palsy Mentally Retarded Medically Compromised (N=1040) (N=1050) (N=1045) Stainless steel crowns p<0.01 p<0.01 p<0.001 N 2 O:O only p<0.0001 p<0.001 p<0.001 Oral sedation only p<0.0001 p<0.001 p<0.0001 N 2 O:O + oral sedation p<0.0001 p<0.0001 p<0.0001 Chi-square test Table 4. General practitioners who often or very often treat disabled children perceive the following issues less frequently as barriers to their willingness to treat them as compared with general practitioners who rarely or never treat disabled children. Cerebral Palsy Mentally Retarded Medically Compromised Level of disability (N=1023) p<0.0001 p<0.0001 p<0.0001 Level of dental disease (N=1022) p<0.0001 p<0.0001 p<0.0001 Patient behavior (N=1018) p<0.0001 p<0.0001 p<0.0001 Level of staff training (N=1013) p<0.0001 p<0.0001 p<0.0001 Availability of funding (N=993) p<0.05 p<0.001 p<0.0001 Current level of training (N=905) p<0.0001 p<0.0001 p<0.0001 Chi-square test 26 Journal of Dental Education Volume 68, Number 1

dental disease, behavior, their staff s level of training, or their own level of training as barriers to their willingness to treat these patients (p<0.05) as compared with those who had lecture experiences only. Those who had both hands-on and lecture (HL) experiences about treating mentally retarded patients were significantly less likely to perceive the patients level of disability, their staff s level of training, or their own level of training as barriers to their willingness to treat them as compared with general practitioners who had lecture experiences only. There were no significant differences in their perceptions of level of dental disease and patient s behavior as barriers compared with their educational experiences in treatment of mentally retarded patients. The method of training in dental school did not significantly affect practitioners attitudes about availability of funding as a barrier to care for all three types of disabilities. These findings are summarized in Table 5. The practitioners dental school training in CSHCN significantly affected whether they desired additional training. Those practitioners who had HL experiences in dental school about all three types of special needs patients were significantly more likely to desire additional training in CSHCN (CP p<0.01, MR and MC p<0.05). A comparison of the responses for types of educational experiences in treatment of CSHCN in dental school with year of graduation indicated significant changes from the 1960s to the 1990s. Those practitioners educated in the 1990s were significantly less likely to state that they had no educational experiences, and those trained in the 1960s were significantly less likely to report that they had received hands-on in combination with lecture experiences (p<0.0001). Discussion The data from this national study of general dentists care of children offered a unique opportunity to gauge the profession s care of children who also have special health care needs. The response rate was modest, but we are confident that the data provide a valid picture of access for CSHCN within the general dental private practice system. Most available studies of practitioners care of special needs populations are state-wide, regional, or alumnirelated 9-11 and do not provide a comprehensive view of care. In addition, our study focused on CSHCN rather than a broader population of special needs patients that includes adults and the elderly, which can color results because of dentist preferences and definitional difficulties. The findings from this survey indicating that fewer than one in ten general practitioners often see children with cerebral palsy, mental retardation, or who are medically compromised confirms previous documentation 1,2 that dental care is one of the greatest unmet health care needs for this population. Results of this study on the effect of education offer a confusing picture for care of CSHCN. Supporting the positive effect of education on the likelihood of caring for CSCHN was the finding that dentists who had not been exposed to hands-on and lecture were less likely to care for these patients. It is also encouraging to note that dentists who had been educated in CSCHN care perceived fewer barriers to providing care to special needs patients. However, those with advanced education in GPR and AEGD programs were not more likely to care for CSHCN, while older dentists who tended not to have had special needs patient education were more likely to care Table 5. General practitioners who had hands-on and lecture (HL) educational experiences in dental school with disabled children less frequently perceive these issues as barriers to their willingness to treat these patients as compared with general practitioners who had lecture experiences only. Cerebral Palsy Mentally Retarded Medically Compromised Level of disability (N=984) p<0.05 p<0.01 p<0.001 Level of dental disease (N=984) p<0.05 NS p<0.05 Patient behavior (N=981) p<0.05 NS p<0.05 Level of staff training (N=976) p<0.05 p<0.01 p<0.01 Availability of funding (N=958) NS NS NS Current level of training (N=877) p<0.0001 p<0.0001 p<0.0001 Chi-square test January 2004 Journal of Dental Education 27

for these patients. Casamassimo 5 suggests that educational programs in care of special needs patients do not necessarily increase the number of dentists willing to care for these patients, but rather reinforce the resolve of those practitioners who are already favorable to CSHCN care to try to help these individuals who have such overwhelming needs. When all is said and done, it may be that the conflicting education findings simply reaffirm the complexity of a dentist s decision to see CSHCN, based on financial, attitudinal, and educational factors. Our data also show that three types of general practitioners are more likely to see CSHCN: dentists practicing in small communities, dentists who take Medicaid children without special needs, and older dentists. We can surmise several possible explanations for these findings. First, small town practice brings with it a closer relationship with patients and community, making dentists more likely to care for these patients. More troubling and boding ill for the future is a possible interpretation that younger dentists, heavily in debt, will not see Medicaid patients or those who might displace patients who can afford care and require less effort. The apparent willingness of older dentists to provide care for this population, in spite of less CSHCN education, suggests there may be an economic factor at play that overwhelms education and good intentions. That is, older established dentists do not have educational debt, have sound financial practices, have dispensed with home-buying and child-rearing expenses, and should have financial stability; young practitioners must confront all the above simultaneously. This interpretation is bolstered by the consistency of Medicaid acceptance for CSHCN and non-cshcn in responses. If financial concerns truly overwhelm education, this would be a major blow to improvement in access as student debt worsens and financially secure dentists retire in large numbers over the next decade. 12 All else being said, it is alarming to note that only one in four general practitioners reported having educational experiences with special needs patients. The dental education community is currently looking at the place of special needs patients in accreditation standards with a requirement for special needs training a possibility. 13 If our profession is to address the needs of CSHCN, a major change must occur in exposure of students to this population with meaningful educational experiences for all. REFERENCES 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. Newacheck P, Hung Y-Y, Wright KK. Racial and ethnic disparities in access to care for children with special health care needs. Ambulatory Pediatrics 2002;2:247-54. 3. Siegal MD. Dentists willingness to treat disabled patients. Spec Care Dentist 1985;5:102-8. 4. American Association of Dental Schools. Curriculum guidelines for dentistry for the person with a handicap. J Dent Educ 1985;49:118-22. 5. Casamassimo PS. The great educational experiment: has it worked? Spec Care Dentist 1983;3:103-6. 6. Romer M, Dougherty N, Amores-LaFleur E. Predoctoral education in special care dentistry: paving the way to better access? ASDC J Dent Child 1999;66:132-5. 7. American Dental Association. Resolution 59H-2000 (Trans 2000:477). 2000 transactions for the 141 st Annual Session, October 14-18, 2000. Chicago: American Dental Association, 2000. 8. Seale NS, Casamassimo PS. Access to dental care for children: profiling the general practitioner who treats young and low-income children. J Am Dent Assoc 2003;134:1630-40. 9. McGrady JA, Kanellis MJ, Warren JJ, Levy SM. Access to dental care for group home residents in Iowa. In: Mouradian W et al., eds. Promoting oral health of children with neurodevelopmental disabilities and other special health needs. Proceedings of a Conference, May 4-5, 2001, Seattle, WA, 2001:159-66. 10. Ferguson FS, Berentsen B, Richardson PS. Dentists willingness to provide care for patients with developmental disabilities. Spec Care Dentist 1991;11:234-6. 11. Weintraub JA, Connolly GN. Effect of general practice residency training on providing care for the developmentally disabled. J Dent Educ 1985;49:321-3. 12. Valachovic RW. Trends in dental education 2000: the past, present, and future of the dental profession and the people it serves. Washington, DC: American Association of Dental Schools, 2000. 13. McTigue DJ, chair, Commission on Dental Accreditation, American Dental Association. Personal communication, September 2003. 28 Journal of Dental Education Volume 68, Number 1