Oral Communication ▸ One size does not fit all
OC 21Sexual and reproductive unmet clinical needs in Italian women living with HIV: results from Marilyn study
Authors: G.V. Calvino1, M. Errico2, A. Tavelli3, M.L. Cosmaro4, A. Perziano5, A. Bove6, L. Taramasso7, I. Mastrorosa8, M. Di Gaetano9, M. Ferrara10, M. Cernuschi11, M. Lichtner12, A.d’Arminio Monforte3, A. Cingolani13 for Icona Foundation Study Group
Affiliation: 1Anlaids Onlus-ETS, Rome, Italy, 2Network Persone Sieropositive Italia APS, Milan, Italy, 3Icona Foundation, Milan, Italy, 4Fondazione LILA Milano, Milan, Italy, 5Associazione Arcobaleno AIDS ODV, Turin, Italy, 6Circolo di Cultura Omosessuale "Mario Mieli", Rome, Italy, 7Infectious Diseases Clinic, Policlinico San Martino Hospital, Genoa, Italy, 8Clinical and Research Department, National Institute for Infectious Diseases 'Lazzaro Spallanzani' IRCCS, Rome, Italy, 9Department of Infectious Diseases, Azienda Ospedaliero-Universitaria di Modena, Modena, Italy, 10Unit of Infectious Diseases, Department of Medical Sciences, University of Torino, Torino, Italy, 11Associazione Solidarietà AIDS ODV, Milan, Italy, 12Infectious Diseases Unit, SM Goretti Hospital, Sapienza University of Rome, Latina, Italy, 13Infectious Diseases Unit, Fondazione Policlinico Universitario A.Gemelli IRCCS, Catholic University of the Sacred Heart, Rome, Italy
ABSTRACT
Background: Women living with HIV (WLWH) face a unique variety of obstacles in their life and health-care journey with HIV : fear of disclosure, stigma-related and mental-related issues, sexual health management etc. Despite that, WLWH have been under-represented in many areas of HIV clinical research; therefore socio-structural barriers leading to gender-related health inequities still persist. Marilyn, a study promoted by Icona Foundation and community-based organizations, investigated for the first time the unmet needs of women living with HIV in Italy.
Methods: An anonymous nationwide web survey created by the Icona Community Advisory Board (CAB) was promoted by the clinical centers adhering to the Icona network and by Community websites and social media. The survey included 73 questions exploring several aspects such as socio-demographic characteristics (household composition and economic conditions), HIV-related health data, information on HIV disclosure, perceptions of stigma and self-stigma, and other female specific health aspect among which pregnancy, menopause, contraception and screening for cancer. The online RedCap survey was conducted from Jun2022 to March 2023.
Results: 210 women followed in 43 clinical centers of the Icona network and 11 other Italian infectious disease units participated to the survey. Median age is 52 (IQR 40-57); 33.5% were diagnosed in the last 10 years, 31.5% have a univerisity degree or equivalent. 21.1% plan to get pregnant and 40.3% initiated pregnancy after HIV diagnosis. They refer having received a less than acceptable medical (30%), psychological (13%) and social assistance (22%) respectively during pregnancy. 58.2% report being in menopause (median age of entry 49, IQR 47-52); 25% report depression soon after menopause, 68% refer not having received support from their clinical center with respect to menopause and 73.8% declare they have not received hormone replacement therapy. Only 18% received accurate informations regarding menopause and HIV. A total of 92% are using or have used contraceptives, 79.3% of them use condoms. 42.1% were advised to have periodic screenings for gynecological diseases, but only 26.3% received them at their HIV clinical center. Moreover, 46.9% felt they need more information on medications and body change, 32.4% on menopause, 23.4% on screenings, and 22.1% on gynecological conditions, while just 33.8% report to be sufficiently informed.
Conclusions: The Survey indicates that WLWH do not receive adequate support for their sexual health needs. These findings suggest (i) to continue investigation on the unexpressed and unmet needs of WLWH and (ii) to create HIV care pathways specifically designed for the female population and guidelines addressing menopause and its clinical management.
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