Abstract
Objective:
To determine if team physicians would allow individuals with hemophilia A to participate in National Collegiate Athletic Association Division I athletics and what factors influence their decisions. An additional purpose was to determine if individuals with hemophilia A are presently participating in Division I athletics.
Design and Setting:
The data were collected with a mail survey designed by the researchers.
Subjects:
66 Division I team physicians.
Measurements:
The questions in the survey were considered important in understanding the history of team physicians with hemophilic athletes, the self-established standard that team physicians would follow in the future with regard to athletic participation by hemophilic players, and the team physicians' reasoning for their standards.
Results:
Of the 231 surveys sent, 72 were returned and 66 were analyzed. Sixteen hemophilic players were reported to have participated in Division I athletics. Several team physicians allowed hemophilic athletes to participate under many circumstances. As the severity of hemophilia A and risk of injury due to sport type (noncontact, contact, or collision) increased, the number of team physicians allowing participation decreased. Also, it was reported that hemophilic athletes were currently participating in sports.
Conclusions:
Athletes with hemophilia are currently participating in Division I athletics, but they have special needs regarding their conditions. Prevention and management plans have been devised to expedite the care of these athletes.
Keywords: blood diseases, preparticipation physical examination, desmopressin acetate
Team physicians' primary responsibilities include conducting preparticipation physical examinations, assessing athletic injuries, and evaluating return-to-play status. With regard to the preparticipation physical examination, the team physician has the right and duty to disqualify anyone not deemed fit to participate.1,2 Guidelines have been established by many sources to aid in the participation decisions of the team physician.3,4 One such source for these guidelines is Athletic Training and Sports Medicine, by the American Academy of Orthopaedic Surgeons. According to this source, complications that call for disqualification include a missing kidney, contagious skin rash, or hemorrhagic disorder.4 Hemophilia A is one such hemorrhagic disorder. Individuals with hemophilia A have a deficiency of clotting factor eight (factor VIII).5–8
To date, very few publications have described individuals with hemophilia and their sport participation. In one article, an overview of participation by hemophilic athletes was provided.9 The authors reported that only 3 other studies gave data on seasonal or yearly athletic participation of hemophilic players,10–12 one on Norwegians and the other two on the Dutch.
Our primary purpose was to determine if team physicians would allow individuals with hemophilia A to participate in National Collegiate Athletic Association (NCAA) Division I athletics and what factors influence their decisions. An additional purpose was to determine if, and under what conditions, individuals with hemophilia A are presently participating in NCAA Division I athletics. Understanding whether team physicians would or do permit individuals with hemophilia A to participate will help us determine whether new guidelines for athletic participation and education for athletic trainers on the treatment and management of hemophilic players with athletic injuries should be developed. The significance of this information may become more important with the advancement of medicine and enforcement of federal statutes such as the Americans with Disabilities Act (ADA).13 With more options available to treat bleeding disorders, individuals with hemophilia may demand to participate.
METHODS
Subjects
The study population was composed of team physicians of universities in the United States with membership in NCAA Division I athletics. These universities were selected from The 1999–2000 National Directory of College Athletics: Men14 NCAA Division I football list. All 231 universities with Division I football programs were included. The purpose of surveying NCAA Division I programs was that these programs tend to have active team physicians who play a role in preparticipation physical examinations. Due to the nature of the topic, the preparticipation screening role was deemed essential.
Before data collection, Bemidji State University's Institutional Review Board approved all methods. Subjects' consents were implied by their responses to the survey.
Instruments
Questionnaire
History was the first area of concern. Physicians who had experience working with hemophilic athletes in the past may have different approaches based on their experiences. A history was also necessary to determine the number of individuals with hemophilia who were participating, along with the severity of the disorder and classification of their sport. In addition to the numbers of individuals, preventive strategies were also addressed in this section, including the location of hemophilia treatment centers, synthetic factor VIII transportation, and desmopressin acetate (DDAVP) precompetition use. These questions were considered important to understanding if the universities had an established protocol for emergency treatment of a hemophilia-related injury.
The next section consisted of a series of questions giving the physician a situation he or she may not have previously encountered. In each situation, the physician would decide whether to permit or not permit the hemophilic athlete to participate. The situations addressed category of sport, severity of hemophilia, and effectiveness of DDAVP. This section was necessary because physicians may not have been put in the position to make that decision in the past. However, the physician's opinion on the topic was needed to determine if there is a potential for participation of hemophilic players in Division I athletics. If the potential exists, then educating athletic trainers on the topic should be considered.
Upon further exploration into the topic, we decided that the reasons the team physicians made their decisions about this topic might be of importance. Variables such as the availability of synthetic factor VIII, availability and effectiveness of DDAVP, recommendations of medical bodies with respect to preparticipation examinations, and influence of the ADA may affect the team physician's decision. It would be important to understand which variables influence the team physician's decision. If the variables change in the future, the decisions might be altered.
The final section of the survey consisted of demographics, which also might influence decisions. Any correlations between demographics and decision making could be identified. The physician's specialty, athletic conference, and number of athletes cared for were included in the demographic data.
Pilot Study
Before actually administering the survey, we conducted a mock survey using the Bemidji State University team physicians: an orthopaedic surgeon and a general practitioner. Both team physicians were included in the survey to represent their areas of specialty and to allow us to collect more input regarding revision.
Distribution of Questionnaire
The questionnaire (Table 1) was mailed to team physicians of universities with Division I football programs based on The 1999–2000 National Directory of College Athletics: Men.14 We used a 4-point contact system: a cover letter and questionnaire, a second letter and questionnaire, a third letter and questionnaire, and a nonresponse postcard. Mailings were separated by 3 to 4 weeks.
Table 1.
A Survey of Division I Team Physicians: Hemophilic Athletes*


Nonresponse Postcard
We sent a nonresponse postcard to the physicians who did not respond to the survey after the third mailing. This postcard had a list of reasons for nonresponse, and the physician was instructed to check a reason and mail the card back. The reason for nonresponse may be important. For example, if the nonresponse cards indicated that physicians did not complete the survey because they were uncomfortable with their experience levels regarding hemophilia, then education may be needed.
Data Analysis
After the data were collected from the respondents, frequencies and percentages of answers were calculated for each situational participation category based on severity of hemophilia and type of sport. The frequencies and percentages of hemophilic players who had participated in Division I athletics were also calculated based on severity of hemophilia and type of sport. All other questions regarding the history, prevention, and demographics were also analyzed using frequencies and percentages. The SPSS 10.0 Graduate Package (SPSS Inc, Chicago, IL) statistical software and a personal computer were used to calculate frequencies. Finally, a qualitative analysis was performed on team physicians' comments regarding the participation of hemophilic athletes.
RESULTS
A total of 231 surveys were mailed and 72 (31.7%) were returned. Of the 72 returned, not all were analyzed; 5 were filled out by athletic trainers, and 1 had contradictory information. The remaining 66 (28.6%) surveys were analyzed, although not all questionnaires had been fully completed. Questions with no response were recorded as “no response” for frequency analysis. Results are reported in 3 categories: “yes,” “no,” and “no response.”
Of the surveys analyzed, 28 athletic conferences were represented. The range of surveys returned for each conference was between 1 and 6. The Big 10 had the highest survey return (6 surveys) of all conferences. The number of athletes per school ranged from 150 to 1500, but most schools had 201 to 600 athletes (60.6%, n = 40). Seven medical specialties were represented, as follows: family practitioners (51.5%, n = 34), internists (16.7%, n = 11), orthopaedic surgeons (12.1%, n = 8), pediatricians (6.1%, n = 4), general surgeons (1.5%, n = 1), physician assistants (1.5%, n = 1), and obstetrician-gynecologists (1.5%, n = 1). The remaining 9.1% (n = 6) of the respondents did not specify a medical specialty.
The percentages of respondents who worked with hemophilic individuals in the past 5 years and at the time the survey was administered were 21.2% (n = 14) and 10.6% (n = 7), respectively. The percentages of respondents who worked with hemophilic athletes in the past 5 years and at the time the survey was administered were 9.1% (n = 6) and 6.1% (n = 4), respectively. Of the 8 respondents who had experience with a hemophilic athlete, 7 knew the location of their home hemophilia treatment centers, 1 knew the location of all away competition sites' hemophilia treatment centers, and 6 required their hemophilic athletes to carry factor VIII to all competitions.
Team physicians were asked if they would permit individuals with different severity levels of hemophilia to participate in various sports (Table 2); they were also asked if specific factors influence decisions to allow or prohibit participation. The percentages of team physicians reporting that the ADA, present participation guidelines, approval of DDAVP, and the development of recombinant factor VIII influenced their decisions were 12.1% (n = 8), 12.1% (n = 8), 53.0% (n = 35), and 25.8% (n = 17), respectively. Additional reasons ranged from team physicians having positive and negative experiences with hemophilic athletes to team physicians having no experience at all (Table 3).
Table 2.
Team Physicians' Responses to Proposed Situations of Sports Participation by Hemophilic Athletes*

Table 3.
Other Factors That Influence Team Physicians' Decisions Concerning Participation by Hemophilic Athletes

The physicians were asked to report the type of sport and severity for each athlete with hemophilia participating at the Division I level (Table 4) and to report if their athletes with mild and moderate hemophilia respond to and use DDAVP. Of the 14 athletes with hemophilia (13 mild, 1 moderate) reported in the survey, 5 athletes (4 mild, 1 moderate) responded to DDAVP (Table 5).
Table 4.
National Collegiate Athletic Association Division I Participation by Hemophilic Athletes Based on Type of Sport and Severity of Hemophilia

Table 5.
Response to and Use of DDAVP* by Hemophilic Athletes Under Team Physicians' Care

Nonresponse Postcard
Thirty-one nonresponse postcards were returned. Team physicians gave various reasons for survey nonresponse, such as being on sabbatical, not receiving the survey, not having time to complete the survey, no experience working with hemophilic individuals, or two or more of the above, which were reported 1, 3, 3, 18, and 2 times, respectively. In addition, 4 team physicians said that they already returned the survey.
DISCUSSION
Interpretation of Survey Results
Hemophilic athletes are currently participating in Division I athletics, and we noted 2 major trends with respect to team physicians' opinions regarding their participation. First, as the severity of the disorder increases, the willingness of the team physicians to allow athletic participation decreases. Also, as the risk of injury with each type of sport (eg, noncontact versus contact) increases, the willingness of team physicians to allow athletic participation decreases. Thus, the severity of hemophilia and type of sport influence the decisions of the team physician. These findings were consistent with the 1990 “Guidelines for Participation.”3
Although these current trends are similar to the 1990 guidelines, team physicians are apparently now more accommodating. In 1990, the only recommended participation was for athletes with mild hemophilia in noncontact sports.3 In the present group of respondents, 20% to 80% of team physicians would allow mild to severe hemophilic players to participate in noncontact sports, even if they did not respond to DDAVP. In addition, some team physicians would permit athletes with mild or moderate hemophilia to participate in noncontact and collision sports.
Most of the results can be attributed to a third variable, DDAVP. In 1983, DDAVP was approved in the United States for use by individuals with mild and moderate hemophilia A. A synthetic antidiuretic hormone, DDAVP has been shown to release factor VIII from endothelial tissue. If more factor VIII is present in the bloodstream before an injury, the extent, volume, and duration of the hemorrhage will be limited in comparison with having less factor VIII present.15 However, the response to DDAVP is not universal.16 The percentage of team physicians who would allow a hemophilic athlete to participate increases for each situation if the athlete responds to DDAVP. Also, team physicians are more willing to allow participation by an athlete with more severe hemophilia who responds to DDAVP over an athlete with a less severe hemophilia who does not respond to DDAVP.
The importance of DDAVP was also demonstrated in the questions that addressed the factors influencing the team physician's decision regarding participation for different situations. Fifty-three percent (n = 35) of team physicians said that DDAVP influenced their decisions. In fact, DDAVP was the most influential factor affecting team physicians' decisions. The next most influential factor was the introduction of synthetic factor VIII, which was only half as important as DDAVP.
One concern that arose was the fact that the DDAVP was not used to its fullest potential. Of those with mild and moderate hemophilia who responded to DDAVP (n = 5), 20% (n = 1) used it for prevention, and 60% (n = 3) used it for treatment. This is a concern because the benefits of DDAVP are already proven for these individuals. With the use of DDAVP, the amount of factor VIII replacement is reduced and recovery time from an injury is decreased.17 It is important to consider that the number of hemophilic athletes responding to DDAVP in this study was only 5. Therefore, the generalizability of these results with regard to current DDAVP use is limited.
Factors that may influence the use of DDAVP are the expense of the product and convenience. One bottle of DDAVP nasal spray costs US $149 and contains 25 doses.18 Each treatment costs about US $6, and the bottle lasts about a month. If the insurance policies of the university or individual do not cover this prescription medication, the expense to the patient will be quite high. In addition, the drug needs to be stored at 2°C to 8°C.19 While traveling, the DDAVP may be stored at 22°C, controlled room temperature.19 This variation in temperature is allowed for convenience; however, the DDAVP lasts longer if refrigerated. Athletes participating in outdoor sports require storage vessels that can maintain room temperature. Another influence may be that plasma factor VIII peaks approximately 1.5 hours after DDAVP use and and maintains its level for about 8 hours.19 The athlete would have to remember to administer the DDAVP before the competition, which may be inconvenient. Another rationale for the lack of DDAVP use as prevention is that with repeated exposures, administered every 12 to 24 hours, the effect of the drug is diminished. Suspending treatment for 1 to 6 weeks can reverse this reduced effectiveness. A final reason for noncompliance with DDAVP could be the possible side effects. Although rarely reported in clinical trials, potential side effects include facial flushing, transient headaches, nausea, nasal congestion, runny nose, and abdominal cramps.16,19,20
Another notable aspect of the results was the team physicians' additional comments regarding concern for the laws, and positive, negative, or no experiences dealing with injured hemophilic athletes. Not all team physicians know how to handle medical situations involving players with hemophilia.
We also found that not all team physicians are comfortable with their knowledge and experience on the topic of participation by hemophilic athletes. In fact, the follow-up postcards indicated that the major reason for not completing the survey was the physicians' lack of experience in working with hemophilic players. Of those team physicians who did respond to the survey, several also indicated that they had no experience working with hemophilic patients, athletes or otherwise. As mentioned earlier, team physicians stated in some cases that they had no experience and would have to consider multiple factors if a situation arose. Also, not all of the team physicians who had experience working with hemophilic athletes knew the locations of both home and away hemophilia treatment centers, and they did not all require their hemophilic athletes to carry factor VIII to competitions.
Limitations
It is important to note that several methods to ensure a high response rate were undertaken, including the use of a 4-point contact, return postage, confidentiality, sponsorship, cover letter, and a clear and well-formatted survey. However, a major limitation of this study is the lack of survey response and inability to generalize the finding to a larger population. From the 28.6% of surveys that were returned and analyzed, we can conclude that some athletes with hemophilia do participate in Division I athletics and that some Division I team physicians are willing to allow participation by athletes with hemophilia based on individual situations. In addition to answering the research questions, we showed that not all Division I physicians are comfortable with the decision to allow participation by—or to disqualify—an athlete with hemophilia.
CONCLUSIONS
Team physicians are willing to permit and presently allow players with hemophilia to participate in Division I athletics. However, these athletes have special needs regarding their conditions, and prevention and management plans have been devised to expedite the care of athletes with hemophilia.21 If injuries can be treated in a safe, effective manner, hemophilic athletes may enjoy the benefits of participating in college athletics, including scholarship monies and enhanced health and social benefits.
ACKNOWLEDGMENTS
This study was conducted with the support of the Bemidji State University's Physical Education, Health and Sport Department. Special acknowledgement goes to Howard Hoody, MD, and Terrance Johnson, MD, for their roles in the content validation of the survey and to Muriel Gilman, Patricia Rosenbrock, and Mary Herried for their assistance in this study.
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