Am. J. Trop. Med. Hyg., 74(5), 2006, pp. 915-917
Copyright © 2006 by The American Society of Tropical Medicine and Hygiene
RISK FACTORS FOR FOLLOW-UP INTERRUPTION OF HIV PATIENTS IN FRENCH GUIANA
MATHIEU NACHER*,
MYRIAM EL GUEDJ,
TANIA VAZ,
VALÉRY NASSER,
ANDRY RANDRIANJOHANY,
FERNAND ALVAREZ,
MILKO SOBESKY,
CHRISTIAN MAGNIEN, AND
PIERRE COUPPIÉ
Centre d’Information et de Soins de l’Immunodéficience Humaine (CISIH) de Guyane, Centre Hospitalier Andrée Rosemon, Cayenne, French Guiana; Hôpital de Jour Adultes, Centre Hospitalier Andrée Rosemon, Rue des Flamboyants, Cayenne, French Guiana; Service de Médecine, Centre Hospitalier Frank Joly, Saint Laurent du Maroni, French Guiana; Service de Médecine, Centre Médico Chirurgical de Kourou, Kourou, French Guiana; Département d’Information Médicale, Centre Hospitalier Andrée Rosemon, Cayenne, French Guiana; Service de Dermatologie, Centre Hospitalier Andrée Rosemon, Cayenne, French Guiana
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ABSTRACT
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French Guiana is the region of France where the HIV epidemic is most prevalent. To determine the risk factors for being lost for follow-up, we followed a cohort of 1,213 patients between 1992 and 2002 and determined which variables were related to two definitions of being lost to follow-up: permanently disappearing from HIV clinics and coming back after more than 1 year of missed appointments. The incidence rate for permanent follow-up interruption was 17.2 per 100 person-years. The median time to lost to follow-up was 4.3 years (interquartile range = 1.4–8.4 years). Cox modeling showed that the younger age groups, foreigners, patients with initial CD4 counts at the time of HIV diagnosis less than 500/mm3, and patients followed before the availability of highly active antiretroviral therapy (HAART) were significantly more likely to be permanently lost to follow-up, suggesting that some of the patients may have died. When looking at temporary loss to follow-up, younger age groups, untreated patients, patients consulting before the availability of HAART, and patients with CD4 counts more than 500/mm3 were more likely to not come back for a period of more than 1 year.
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INTRODUCTION
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With 48 new AIDS cases per 100,000 inhabitants per year and 1.6% of pregnant women infected with HIV, French Guiana is the French overseas area where the HIV epidemic is most prevalent.1 Transmission occurs through heterosexual sex in more than 90% of the cases. Approximately two thirds of patients with HIV are foreign citizens.2
French Guiana is a crossroad for poor Caribbean and South American populations that emigrate there in search of a better life. The standards of health care are close to those of metropolitan France. All patients with HIV receive free anti-retroviral treatments (including the most recent drugs), regardless of their origin or socio-economic level. All necessary diagnostic procedures are undertaken; genotyping and anti-retroviral concentration measurements are performed when indicated. Illegal immigrants that are HIV+ obtain residence permits.
The follow-up of patients is of paramount importance to measure their immunovirological status and eventually start or optimize anti-retroviral therapy, to screen for and prevent HIV-related morbidity, and last but not least, to deliver prevention messages. In this unique setting where an epidemic that resembles that of a developing country meets a developed health care system, information is needed to adapt strategies to the local reality. Using the data from the French Guiana Cohort (included in the French Hospital Database on HIV), our objective was to determine the risk factors for patients to be lost to follow-up.
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MATERIALS AND METHODS
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General information on French Guiana.
French Guiana is located at the northern part of South America. It is a French Department and Region that is approximately the size of Portugal. As such, it does not appear in the South American statistics of Joint United Nations Programme on AIDS (UNAIDS),3 and the data are pooled with those of metropolitan France, where the epidemic bears little resemblance with the situation in French Guiana.
French Guiana has an equatorial climate, and 90% is covered primarily by rain forests. Consequently, a number of towns are isolated, have no roads, and can only be accessed by air or by river boats. The official population was 157,000 in 1999, but it is estimated that the real number exceeds 200,000. The population is truly multicultural, with the population composed of Creole, metropolitan French, French-bushinengue, French-Lebanese, French-Chinese, French-Hmong, Haitian, Brazilian, Dominican, Surinamese, Guyanean, African, and more. Approximately 30% of the population is economically precarious, 23% are unemployed, 40% cannot read or write, and 11% are on welfare.4
The population increases by 3.6% yearly, which leads to a doubling every 15 years. This is because of a high natality rate at 26.5/1,000 inhabitants and illegal immigration. As a consequence, the population structure is that of a developing country, with 44% of the population being less than 20 years of age. Most immigrants from Haiti fled during the Duvallier regimes and were joined by their relatives in the 90s after a decision from the Office of International Migration. In the early 90s, the civil war in Suriname led to a massive flux of refugees in western French Guiana. After the war, many of the refugees stayed because of better living conditions. There is, in addition, a constant flux of immigrants trying to find a better life than where they come from. Many of these immigrants live in shanty towns.
Factors facilitating the HIV epidemic.
Most cases of HIV are acquired through heterosexual sex. Multiple sex partners (more than one sex partner per year) are found in 43% of men and 13% of women, which is three to four times more frequent than in metropolitan France.5 Various forms of trading sex for material benefits are frequent in an area with marked inequalities, where many women have little education and no financial independence. Sexually transmitted diseases are endemic. Beliefs about supernatural causes of AIDS or conspiracy theories about condoms might be obstacles to classic preventive measures. Overall, these circumstances have been extremely favorable for the development of the HIV epidemic.
HIV care.
There are three hospitals in French Guiana located in the three main residential areas along the shoreline; the inland communes are covered by health centers that may refer patients to the nearest hospital. Cultural mediators are available in two of the three hospitals to merge the gap between the medical explanations and the traditional explanation of AIDS and to translate the medical message to the patients. Social workers assist patients in obtaining residence permits that are delivered to sick patients from countries where they cannot receive treatments. Psychologists support patients when needed. Patient associations are rare in small towns where the stigma of HIV is still one of the greatest fears of most patients. The density of general practitioners is three times lower than in metropolitan France, and so few are willing to follow patients with HIV in their private practice because of the time-consuming complexity of the discipline.
Patients.
HIV-positive patients followed in Cayenne, Kourou, and Saint Laurent du Maroni Hospitals between January 1, 1992 and December 31, 2002 were enrolled in the French Hospital Database for HIV (FHDH). Time-independent variables such as sex, nationality, and contamination mode and time-dependent variables such as age, CD4 counts, HIV1 viral loads, treatments, and clinical events are routinely entered by trained clinical studies technicians.
Overall, 1,213 patients with a total of 18,482 observations were included. The outcome variable was either permanent or temporary (> 1 year) interruption of follow-up.
Patients included in the FHDH gave informed consent for the use of their data. Their identity was encrypted before the data were sent to the Ministry of Health and the Institut National de la Recherche Médicale (INSERM), which centralize data from the Centers for Information and Care of HIV (CISIH) throughout France. This data collection was approved by the Commission Nationale Informatique et Libertés (CNIL).
Statistical analysis.
The data were analyzed with STATA 8.0. A Cox proportional hazards model (Stata Corporation, College Station, TX) was used to evaluate the adjusted relation between failure and explanatory variables. Failure was defined as either permanent interruption of follow-up, excluding patients known to be deceased, or temporary interruption of follow-up defined as a period of more than 1 year before consulting again. The proportionality of the hazard functions was determined graphically using Schoenfeld residuals. Age, nationality, and CD4 count category at the time of HIV diagnosis were transformed into dummy variables to compare groups with a reference group.
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RESULTS
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Overall, there were 578 (47.7%) Haitian patients, 313 (25.8%) French patients, 135 (11.1%), 87 (7.2%) patients from Guyana, 67 (5.6%) Brazilian patients, and 33 (2.7%) patients from other countries. There were 656 (54%) women and 557 (46%) men. Among patients, 40% had ever received highly active antiretroviral therapy (HAART) (48% if considering the period starting in 1996). Fifty-eight patients (4.8%) were less than 20 years of age, 322 (26.6%) were between 20 and 29 years of age, 520 (42.9%) were between 30 and 39 years of age, 485 (40%) were between 40 and 59 years of age, and 82 (6.8%) were more than 60 years old.
There were 660 permanent loss to follow-up events (incidence rate, 17.2 per 100 person-years) for an observation period of 3,839 years. The median follow-up was 2.08 years (interquartile range [IQR]=0–10.9). The median time to failure was 4.3 years (IQR = 1.4–8.4 years).
Table 1
shows that the younger age groups, foreigners, untreated patients, patients with initial CD4 counts at the time of HIV diagnosis less than 500/mm3, and patients followed before the availability of HAART were most likely to be lost to follow-up. Before HAART was available, some patients who had disappeared did so because they went to die in their country. Therefore, we looked at patients who disappeared for more than 1 year and came back to avoid the possibility that the reason for loss of follow-up was unreported death. There were 409 temporary interruptions of follow-up (multiple failure analysis), which represented an incidence rate of 10.6/100 person-years. In this subanalysis, younger patients, untreated patients, patients consulting before the availability of HAART, and patients with CD4 counts of more than 500/ mm3 were more likely to temporarily interrupt follow-up (Table 2).
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DISCUSSION
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More than one third of the patients from our cohort have been permanently lost to follow-up. This study shows some of the numerous factors underlining this very high rate of loss of follow-up. Younger patients, patients not receiving any treatment, and patients diagnosed with HIV with CD4 less than 500 mm/3 at the time of diagnosis where more likely to disappear. Foreigners in general also seemed more likely to be lost to follow-up. This confirms another study performed in patients diagnosed with HIV because of dermatological symptoms; patients without residence permits were most likely to be lost.6 Socio-economic difficulties may have led them to rank medical follow-up low in their priorities.7 In addition, immigrants are geographically mobile by definition. Therefore, they would also seem more likely to move on elsewhere in search of better living conditions or to go back in their country of origin for extended periods, either voluntarily or forced back by immigration authorities. The study by Couppié and others6 showed that, before the availability of HAART, 48% of foreign patients returned to their country of origin. Finally, cultural representations of AIDS as a consequence of supernatural forces and a lack of education make it more difficult to adhere to the medical message, and some patients may simply die before they can come back to HIV clinics. Although some patients may have consulted a practitioner that does not work for the FHDH, the increased risk of permanent loss for follow-up in untreated patients and patients with lower CD4 counts suggests that some patients died without benefiting from specialized care.
One of the difficulties of the definition used in this study is that we could not know for sure if patients lost to follow-up were still alive. This is why we looked at a milder version of lost for follow-up defined as patients coming back after more than 1 year. When looking at temporary interruption of follow-up, different factors seemed to be involved. Younger age groups may be less likely to accept the disease than older age groups. They may also have greater geographical and social instability (getting a stable job, finding a stable mate). The fear of being identified as HIV positive may also be greater for those who are still on the "matrimonial market." Patients are often lost to follow-up at the early stages of the infection and come back into the medical circuit at very advanced stages of immunodepression, after a long period of traditional "treatments." In contrast with the results for the permanent interruption of follow-up, CD4 counts of more than 500 mm/3 were associated with temporary disappearance of patients. This suggests that these patients may not feel any tangible symptoms of the HIV infection and thus do not perceive the benefit of strict follow-up. Globally, the above factors have also been shown to predict appointment attendance in the United States.8 The fact that treated patients are less likely to be lost to follow-up and that patients in general have been less likely to disappear since the availability of HAART suggest that when patients understand the benefits conferred by treatment they are more likely to come back if they have hope of improving their health. It is thus important for physicians to explain and emphasize the necessity of follow-up, especially if patients do not receive treatment, to prevent patients from straying because of the disappointment of not receiving treatment.
Received May 12, 2005.
Accepted for publication January 6, 2006.
Acknowledgment: We thank Sergine Soyon and Karine Verin for data entry and management.
* Address correspondence to Mathieu Nacher, CISIH, Center Hospitalier Andrée Rosemon, Rue des Flamboyants, 97306 Cayenne, French Guiana. E-mail: m_nacher{at}lycos.com 
Authors’ addresses: Mathieu Nacher and Christian Magnien, Centre d’Information et de Soins de l’Immunodéficience Humaine (CISIH) de Guyane and Centre Hospitalier Andrée Rosemon, Rue des Flamboyants, 97306, Cayenne, French Guiana. Myriam El Guedj and Tania Vaz, Hôpital de Jour Adultes, Centre Hospitalier Andrée Rosemon, Rue des Flamboyants, 97306, Cayenne, French Guiana. Valéry Nasser and Andry Randrianjohany, Service de Médecine, Centre Hospitalier Frank Joly, Ave du Général De Gaulle, 97320, Saint Laurent du Maroni, French Guiana. Fernand Alvarez, Service de Médecine, Centre Médico Chirurgical de Kourou, 97310 Kourou, French Guiana. Milko Sobesky, Département d’Information Médicale, Centre Hospitalier Andrée Rosemon, Rue des Flamboyants, 97306, Cayenne, French Guiana. Pierre Couppié, Service de Dermatologie, Centre Hospitalier Andrée Rosemon, Rue des Flamboyants, 97306, Cayenne, French Guiana.
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- UNAIDS, Available online at http://www.unaids.org/EN/geographical+Area/By+Region/latin_america.asp. Accessed May 12, 2005.
- Institut National de la Statistique et des Études Économiques (INSEE), 2004. Available online at http://www.insee.fr/fr/insee_regions/guyane/home/home_page.asp. Accessed May 12, 2005.
- Giraud MGA, 1995. Analysis of Sexual Behaviour in the French Antilles and French Guiana. Agence Nationale du Recherches sur le Sida et les Hépatites, Paris, France.
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ABSTRACT
INTRODUCTION
