Quality of life, self-reported outcomes and impact of education among people with moderate and severe hemophilia A: An integrated perspective from a Latin American country.

Collecting and interpreting self-reported outcomes among people with hemophilia A supports the understanding of the burden of the disease and its treatment to improve holistic care. However, in Colombia, this information is limited. Therefore, this study aimed to describe the knowledge, perception and burden of hemophilia A from the patients' perspective. A cross-sectional study was conducted in the context of a hemophilia educational bootcamp held from November 29th to December 1st, 2019, in Medellin, Colombia. The bootcamp was organized by a hemophilia patient association responsible for contacting and inviting patients with hemophilia A (PwHA). Information on patients' health beliefs, treatment experiences, and health-related quality of life (HRQoL) was obtained through focus groups, individual interviews and the Patient Reported Outcomes, Burdens and Experiences (PROBE) questionnaire. A total of 25 moderate or severe PwHA were enrolled in this study and completed the PROBE questionnaire. Acute pain was the most frequently reported symptom, with 88% of the patients reporting the use of pain medication. Difficulty with activities of daily living was reported by 48%. Furthermore, 52% reported having more than 2 spontaneous bleeding events in the last year. Treatment was administered at home for 72% of patients, with regular prophylaxis as the most common treatment regimen. In terms of overall HRQoL, the median EQ-5D VAS score was 80 (IQR: 50-100). PwHA in Colombia still suffer from disease complications related to bleeding events, pain and disability that affect their HRQoL, which highlights the need to develop patient-centered initiatives to improve the wellness of this population.

"Existimos": Health and social needs of transgender men in Lima, Peru.

BACKGROUND: The health of transgender men (trans men)-individuals who identify as men and were assigned a female sex assigned at birth-is overlooked globally. This mixed-methods exploratory study sought to understand the lived experiences, health, and social needs of trans men in Lima, Peru to bring visibility to specific health needs and inform responsive and holistic public health efforts. METHODS: Between July 2016-January 2017, 46 trans men in Lima, Peru participated in a mixed-methods study. Four focus group discussions were conducted, complemented with 10 one-on-one interviews to explore in-depth issues that arose in groups. Two individuals participated in both a focus group and an interview. All participants completed a brief survey assessing sociodemographic characteristics and experiences with healthcare, mental health, and stigma. Audio files were transcribed verbatim and analyzed using an immersion crystallization approach to identify themes. RESULTS: Participants had a mean age of 24 years (range 18-48). Trans men reported a lack of awareness and information among medical providers, avoidance of healthcare due to discrimination and maltreatment, an absence of public services for medical gender affirmation (hormones, surgeries), and unmet mental health needs. Trans men described health as multidimensional and influenced by social, economic, and legal contexts including family, school, employment and work, legal identity recognition, discrimination in public spaces, and peer support. Violence, stigma, and intersecting forms of oppression were described as limiting social and legal recognition of trans identity a central dimension of health. Peer support, often in an online environment, was described as important to resistance and well-being. CONCLUSIONS: Findings demonstrate that the physical and mental health of trans men, as well as unmet needs for healthcare services, are influenced by a complex set of social, economic, and legal challenges due to the social exclusion of trans people in Peruvian society. Results are a call to action for stakeholders in Peru to guarantee the rights, health, and wellbeing of this community.