Family Practice Vol. 19, No. 2, 125-127
© Oxford University Press 2002
Original Paper |
How are patients informed about their HIV test results?
a Unit of Epidemiology, Scientific Institute of Public Health, J. Wytsmanstraat 14, 1050 Brussels and
b Department of General Practice, University of Brussels, Brussels, Belgium.
Devroey D, Van Casteren V and Sasse A. How are patients informed about their HIV test results? Family Practice 2002; 19: 125–127.
Received 4 April 2001; Revised 2 October 2001; Accepted 1 November 2001.
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Abstract |
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Background. AIDS and HIV are hot topics in public health nowadays, but little information is available about the way in which HIV test results are communicated to patients.
Objective. Our aim was to find out about the way in which patients are informed about their HIV test results and the delay they experience.
Method. Since 1996, a representative network of sentinel GPs has recorded data about requests for HIV tests, risk factors and the way in which and the delay with which patients are informed about their HIV test results.
Results. Between 1996 and 1999, 4807 requests for an HIV test were recorded. Test results were given mostly by phone (41.9%). Patients at risk were informed more often during a planned follow-up. Anxious patients were informed more often about the results by phone, and in 61.2% test results were communicated during the first week following the test. Results were given earlier if patients were anxious or had themselves asked for the test. Although non-consensual HIV testing is against the European guidelines on informed consent, 102 tests (2.2%) were performed without informed consent.
Conclusions. Even though notification by phone decreases the delay, physicians should be encouraged to make follow-up appointments to inform the patient about the test results. A face-to-face conversation is the only way in which physicians can offer valuable post-test counselling. Physicians should be informed about the unlawfulness of non-consensual HIV testing.
Keywords. Family practice, HIV infection, sentinel networks.
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Introduction |
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Little information is available about the way in which HIV test results are communicated to patients. Mak-ing the decision to be tested is a stressful and sometimes traumatic experience. In particular, the period between the test and the communication of the results is a stressful period. Patients may feel anxious and depressed, and may fear contracting AIDS and having infected others.1,2
Confidential counselling and testing can be carried out by all Belgian GPs. They can perform HIV tests without specific legal restrictions on the testing indication or on the patient's consent. However, according to Belgian law concerning deontology and physical integrity, patients should be aware of the test and physicians can only perform the test for diagnostic reasons or treatment follow-up. As part of a larger study, this paper reports on the way in which GPs inform their patients about HIV test results.
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Methods |
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The Belgian sentinel network of GPs made the recordings for this study. The network has been functioning since 1979 and serves as a reliable source for the surveillance of morbidity in Belgium.3,4 Since May 1988, every adult patient who consulted their GP and requested an HIV test was registered. Risk factors, motivation and request data were collected in the initial recording on a weekly registration form. Two weeks after the initial recording, the physician was sent an in-depth questionnaire on the HIV test results. Since 1996, the in-depth questionnaire contains questions on the way in which test results are reported to the patient. Patients were asked about their own perception of anxiety and risk of HIV, but no measuring scales were used. Because of the small number of patients who were confirmed to be HIV-positive (n = 25), no specific analyses were done for this group.
SPSS-PC 9® (SPSS Inc., Chicago, IL) was used for analysis and statistical processing. Significant differences were detected with the independent-samples t-test. The cross-tables from Epi Info 2000® were used to detect differences between groups by means of chi-square tests. Where these were not applicable, the Fisher exact two-tailed P-value was used.
The sentinel population (n = 140 000) was estimated to be 1.4% of the Belgian population.
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Results |
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An HIV test was performed for 97.6% of the 4807 requests recorded between 1996 and 1999. About 52.4% of the tested subjects were female. The mean age of the tested subjects was 32.7 years. The mean age for men (34.7 years) was higher than for women (31.0 years) (P < 0.001). Most of the tested subjects (59.0%) were aged between 25 and 44 years (Fig. 1
). The ethnicity of the subjects was not recorded.
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Most tests (65.9%) were performed upon patients' request. The remainder were recommended by the GP. About 2.2% of the patients were being tested without their explicit authorization. Most of the patients (58.3%) considered themselves at risk. Anxiety was recorded in 45.2% of all requests.
Way of communication
For 41.9% of those tested, HIV test results were given by telephone, for 33.1% during a previously planned follow-up consultation and for 20.0% during the next unscheduled consultation. Only 3.4% of the results were given by mail, and other means were used for 1.6%.
Test results were given by phone more often if patients requested the test. For tests recommended by GPs, results were communicated more often during the next contact or by mail (Table 1). Test results were communicated more commonly during a planned follow-up for tests performed with the patient's consent. If not, test results were given more often during the following unscheduled meeting.
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For patients who were not at risk and/or anxious, test results were given more often by telephone. Patients at risk received their test results more often during a planned follow-up consultation (Tables 2 and 3
).
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Delay in communication
For 62.2%, HIV test results were communicated to the patient within a week following the test. For 33.1%, the results were given during the second week, for 4.4% after 2–4 weeks and for 0.7% after >4 weeks.
Test results were communicated during the first week after the test in 64.9% for tests at the patient's request, and in 55.0% for tests recommended by the GP (P < 0.0001). Whether the patient was at risk or not, the delivery time of the test results was approximately the same (P = 0.062). Test results were communicated during the first week in 63.8% for anxious patients and in 60.1% for non-anxious patients (P < 0.01).
How often was the test result withheld?
For 7.0%, the HIV test results were not communicated to the patient. For tests recommended by GPs (11.1%), test results were withheld more often than tests at the patient's request (P < 0.0001). Results for patients not aware of testing were withheld more often (28.1%) than for patients aware of the testing (P < 0.0001).
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Discussion |
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About two-thirds of the tested patients are at risk or feel anxious. GPs take these factors into account and try especially to communicate test results as soon as possible in these circumstances. For other patients, the delay between the collection of the blood sample and the communication of the results can easily be 2 weeks or more. The delay between collection of blood samples and availability of test results is one of the barriers to overcome in HIV testing programmes.5
Test results are often communicated by phone. This can speed up the process for anxious patients and subjects at risk. However, communicating the results by phone also has its limitations.
For patients who tested negatively, post-test counselling is a perfect opportunity to talk about prevention and reduction of risk behaviour.6 This can best be done during a planned follow-up consultation. Once the results have been communicated by phone, the patient will probably not return for post-test counselling. For patients who tested positively, a face-to-face contact is indispensable to inform the patient about his situation and the disease. The quality of prevention and counselling is much better during face-to-face contact.2 Irrespective of the test result or of the anxiety or risk for an infection, an appointment for a post-test follow-up should be made.
The number of HIV tests which are done without the patient's consent is astonishing. A national telephone survey among hospital staff in the USA revealed a similar problem.7 As a result of the large number of tests carried out without consent, a lot of patients are not informed about their test results. It is an infringement of human rights and unlawful to test a subject for HIV without his knowledge and consent. Patients do not necessarily wish to accept testing. A review revealed that the acceptance rates varied widely (3–100%), even within settings of the same type.8 Similar results were demonstrated in two registrations among pregnant women.9,10 Although there is no specific Belgian law on HIV testing, there are strict European guidelines on informed consent. The medical council should give further consideration to non-consensual HIV testing and provide better information to the physicians about this matter.
In conclusion, most test results are communicated by phone. Anxious patients are more likely to be notified by phone as this reduces the waiting time. However, physicians should be encouraged to make follow-up appointments to inform the patients about their test results and to offer post-test counselling. Physicians should be informed about the notion of the abuse of power related to non-consensual HIV testing.
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Acknowledgments |
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The authors would like to thank all participating sentinel practitioners for their daily efforts during many years, Henk Van Renterghem for his contributions to the data set, and Christophe Sykes, Marianne van Winden, Sophie Quoilin and Francis Capet for their comments on this manuscript.
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References |
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1 Perry SW, Jacobsberg LB, Fishman B, Weiler PH, Gold JW, Frances AJ. Psychological responses to serological testing for HIV. AIDS 1990; 4:145–152.[ISI][Medline]
2 Vannotti M, Samaniego M, Guex P, Rossi I. Perception of anxiety in patients requesting anonymous HIV testing. Schweiz Med Wochenschr 1994; 124:1941–1944.[ISI][Medline]
3 Stroobant A, Van Casteren V, Thiers G. Surveillance systems from primary-care data: surveillance through a network of sentinel general practitioners. In Eylenbosch WJ, Noah (eds). Surveillance in Health and Disease. Oxford, Oxford University Press, 1988: 62–74.
4
Lobet M, Stroobant A, Mertens R et al. Tool of validation of the network of sentinel general practitioners in the Belgian health care system. Int J Epidemiol 1987; 16:612–618.
5
Irwin K, Olivo N, Schable CA, Weber JT, Janssen R, Ernst J. Performance characteristics of a rapid HIV antibody assay in a hospital with a high prevalence of HIV infection. CDC–Bronx– Lebanon HIV Serosurvey Team. Ann Intern Med 1996; 125:471–475.
6 Anderson J. Why is testing for HIV so different? Aust Fam Physician 1997; 7:819–823.
7 Freeman HE. HIV testing of asymptomatic patients in U.S. hospitals. Med Care 1991; 29:87–96.[ISI][Medline]
8 Irwin KL, Valdiserri RO, Holmberg SD. The acceptability of voluntary HIV antibody testing in the United States: a decade of lessons learned. AIDS 1996; 10:1707–1717.[ISI][Medline]
9
Simpson WM, Johnstone FD, Boyd FM, Goldberg DJ, Hart GJ, Prescott RJ. Uptake and acceptability of antenatal HIV testing: randomised controlled trial of different methods of offering the test. Br Med J 1998; 316:262–267.
10 Boyd FM, Simpson WM, Hart GJ, Johnstone FD, Goldberg DJ. What do pregnant women think about the HIV test? A qualitative study. AIDS Care 1999; 11:21–29.[ISI][Medline]
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