Klara Curtis, M.D., Rod Curtis, M.D., & Sandy Vicari, Ph.D.
A survey seeking information about health care services to persons with mental retardation was sent to a randomly selected group of practicing physicians of various specialties in the state of Illinois. Of the 312 respondents (24% response rate), 95% reported that they currently provide clinical care to this population. Seventy percent of the responding physicians reported having had no prior formal educational experience in the care of persons with mental retardation. Survey results also identify those areas in which the physicians desired increased education.
In the Surgeon General's Closing the Gap: A National Blueprint to Improving the Health of Persons with Mental Retardation (2002), the unmet health needs and disparities in health care services experienced by persons with mental retardation were brought to our nation's attention. One of the important goals outlined by the report emphasized the need to improve educational experiences for health care providers in the care of adults and children with mental retardation.
The importance of training medical students and resident physicians, as well as increasing awareness of the needs of persons with mental retardation in practicing physicians in the community, is clear. To begin addressing these issues, a survey was developed with the intent to obtain information in three broad areas. First, to help identify those health care providers currently caring for persons with developmental disabilities; second, to establish their personal comfort level in working with this population; and third, to gain information regarding past formal training the physicians may have had to assist them in their current practice. The survey was sent to a group of randomly selected physicians practicing in Illinois.
Physicians currently practicing in the state of Illinois were included in the study. A random sample was drawn from a listing of all practicing physicians which had been divided into groups according to the major geographic divisions in Illinois (Southern Illinois, Central Illinois, Northern Illinois and the Chicago area). The original list was compiled by Southern Illinois University data base personnel. This yielded a sample of 1291 physicians.
A two page survey was sent to each physician. Background information regarding the physician's specialty, characteristics of his / her practice, number of active patients with mental retardation was obtained. Responses to additional questions addressing the physician's comfort level in working with this population as well as past formal training they may have had were elicited. Issues regarding adequacy of reimbursement and accessibility of referral centers / specialists and, finally, interest in gaining additional information / educational experiences were explored.
A descriptive analysis of the survey data was completed and is presented here.
Questionnaires were completed and returned by 312 respondents after the initial mailing (24 %). A substantial portion of nonrespondents were from Northern Illinois and the Chicago area.
Table 1 profiles the physician respondents. Family practitioners, internists, and psychiatrists represent the majority of the specialties (48.1, 23.1 and 12.2 % of the total number, respectively) with similar numbers practicing in individual, small (< 10), and large (>10) group situations. 36.9 % have been in practice over 20 years.
Provision of care issues
As shown in Figure 1a, 95% of the physician respondents are currently providing care to persons with mental retardation. The number of patients represent less than 10% of the physician's total number of patients in the great majority of practices (95%) with only 1% of the physicians indicating they have > 20% of patients with mental retardation in their current practice (Figure 1b). Over 70% of the reimbursement is obtained from Medicare and Medicaid.
Formal past educational experience in the care of persons with mental retardation is shown in Figure 2. 70% of physicians reported no prior training with the remaining 30% having had some form of education during either medical school or residency. Of interest, 57% of the physicians surveyed believed their training was adequate to meet their professional needs.
When asked to rate their current comfort level providing care to persons with mental retardation, 42% of the physicians reported feeling very comfortable, 29% reported feeling somewhat comfortable, 20% were neutral and 9% were very uncomfortable (Figure 3).
Potential resources to assist physicians in the care of persons with MR
Availability of adequate referral centers/specialists for people with mental retardation was assessed. 44% of physician respondents reported adequate access to such services while 56% reported inadequate access (Figure 4).
66% of respondents expressed an interest in further education in providing care to this population. Table 2 identifies the topics of interest with the three most common involving unique medical problems, common medical illnesses and the management of challenging behaviors.
Providing health care for persons with mental retardation involves a number of challenges for the physician. Many of these difficulties have been recognized and described by various authors over the past two decades (Garrard, 1983; Minihan, 1993) and include such issues as lack of clinical experience with individuals who have mental retardation, uncertainty about the adequacy of their skills for examining and communicating with the patients, frustration at the resistance of some individuals to preventative, diagnostic or therapeutic procedures, difficulty recognizing health problems when the person cannot communicate directly, discouragement because of the extraordinary time requirements and inadequate financial reimbursement, and negative attitudes that may lead to the rejection of patient or the denial of life sustaining therapies. In 1993, a survey of physicians in Maine by Minihan et al set out to investigate the major issues in the provision of medical care of persons with mental retardation. Their findings helped identify the potential obstacles faced by physicians with the greatest concern related to the ability to obtain pertinent information about the patient's presenting problem and medical history.
Persons with mental retardation residing in the community receive health care services from a variety of physicians in various specialties. While providing these services is often challenging and requires clinical experience, most physicians lack formal training and have limited clinical experience with regards to the unique health care needs of this population. Community physicians also face the challenge of limited referral centers to assist them in the management of complicated issues. These barriers, among others, result in less than ideal conditions for providing efficient and efficacious health care services to this valuable population. It is our hope that the raised awareness prompted by the Surgeon General's report, and the realities reported by a randomly selected group of physicians in Illinois, help foster the development and implementation of enhanced medical education in the field of developmental disabilities and ultimately leads to improved health care and quality of life for all persons with mental retardation.
U. S. Public Health Service. (2002). Closing the gap: A national blueprint to improve the health of persons with mental retardation. Report of the Surgeon General's Conference on Health Disparities and Mental Retardation. Washington, DC: U.S.D.H.S..
Garrard, S. D. (1983). Community health issues. In J. L. Matson & J. A. Mulick (Eds.), Handbook of mental retardation (pp. 289-305). New York: Pergamon Press.
Minihan, P. M., Dean D. H., & Lyons, C. M. (1993). Managing the care of patients with mental retardation: A survey of physicians. Mental Retardation, 31, 239-246.
For further information: Dr. Klara Curtis, firstname.lastname@example.org