[The needs and expectations of HIV patients before starting a therapeutic patient education program]

The purpose of this study was to identify and quantify needs and expectations among HIV patients with a view to developing and implementing a therapeutic patient education program.A qualitative study using semi-structured interviews was conducted to identify patient education needs. A quantitative study based on a personal questionnaire was subsequently conducted at the teaching hospitals of Nantes and Angers (France).The study was based on a sample of 351 patients (73% of the sample were men and 27% were women). The mean age of the participants was 45.7 years. 73% of the patients stated that they had spoken to a hospital practitioner, while just 29% claimed to have spoken to nurses. 83% stated that they were satisfied with the availability of nursing staff. 88% considered that practitioners explained their treatment decisions, while 80% stated that they had been asked for their opinion. Of the 301 patients treated, 97% felt that they were able to correctly take their medication, while 48% felt that they had no knowledge of HIV-related complications. 68% of the patients expressed concerns about infection risks, particularly young patients (p0.001). Concerning the side effects of treatment (lipodystrophy, pain, insomnia, physical changes), half of the patients felt that they had been adequately informed. In terms of emotional support, 79% of the patients stated that they had someone to talk to in the event of a problem. Half of the patients felt isolated and 19% felt discriminated against. Three quarters of the patients did not wish to discuss their financial difficulties, their work problems or the death of a close relative due to HIV infection. Finally, patients treated for more than ten years felt a stronger need to join an association (p = 0.001).The results suggest the need to improve patients' ability to express their needs, particularly those who are not members of an association. In addition to the implementation of a therapeutic education program, a social support program is also needed.