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

Objectives: 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. Materials and methods: 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). Results: 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 (p < 0.001). 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). Conclusion: 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.