Aspects of care among HIV infected patients : needs, adherence to treatment and health related quality of life

The HIV disease has many manifestations, some of which may compromise the patient's well- being and quality of life. In addition, the intake of antiretroviral drugs entails inconvenience or discomfort that may degrade the heath related quality of life (HRQOL).The objectives of these studies were to describe health related quality of life among patients, from an outpatient clinic specialised in HIV care, in relation to coping ability and biomedical status and to identify HIV infected gay men's perception of health care. Several questionnaires were used to collect data concerning sense of coherence, functional status, HIV symptom, wellbeing, social network, general health, disclosure of the diagnose and adherence to the antiretroviral therapy. In depth interviews were used to collect data from 11 HIV infected gay men.

The results from the interview study indicates the complexity of being a HIV infected gay man when seeking care in the health care community. Factors related to the satisfaction of the patient's needs were to be recognized as an individual, to be integrated and actively involved in the decision-making process of the care, to have available health care personnel specially trained in HIV cam, and to have enough knowledge to manage the health cam system.

HRQOL in relation to gender show that women had lower social support and well-being and were more vulnerable to stressful situations than the men. Notably, among the women who keep the HIV diagnosis for them selves reported a higher level of well-being. Patient's with difficulties in adapting to the disease and daily living exhibit problems with adherence to antiretroviral therapy regardless of disease stage. A majority expressed restrictions in the daily activities caused by antiretroviral therapy. A person's sense of coherence seems to be the strongest predictor for HRQOL, thus the lower the SOC the lower the HRQOL, regardless of biomedical status or background characteristics.The longitudinal study over 24 month shows that the biomedical status improved significantly without any improvement in the HRQOL variables.

The studies revealed the importance of further intervention research to improve HRQOL among those patients having difficulties to handle stressful situations like HIV diagnosis and subsequently the disease progress, together with antiretroviral therapy. The SOC scale suggests to be used as an instrument, identifying patients in need of most care and support.

List of scientific papers

I. Cederfjall C, Wredling R (1999). The expressed needs of a group of HIV-infected gay men subsequent to hospital care. J Assoc Nurses AIDS Care. 10(2): 66-74.
https://pubmed.ncbi.nlm.nih.gov/10065411

II. Cederfjall C, Langius-Eklof A, Lidman K, Wredling R (2001). Gender differences in perceived health-related quality of life among patients with HIV infection. AIDS Patient Care STDS. 15(1): 31-9.
https://pubmed.ncbi.nlm.nih.gov/11177586

III. Cederfjall C, Langius-Eklof A, Lidman K, Wredling R (2002). Self reported adherence to antiretroviral treatment and degree of sense of coherence in a group of HIV infected patients. AIDS Patient Care STDS.

IV. Cederfjall C, Langius-Eklof A, Lidman K, Wredling K (2002). Health related quality of life in relation to sense of coherence in a group of HIV infected patients, a longitudinal study. [Manuscript]