Outcomes of Transition to Adult HV Care in Perinatally HIV-infected Young Adults

Abstract

No one could write a dissertation without the support of many. My special appreciation and thanks to Dr. Consuelo M. Beck-Sagué. She had my back and her prolific knowledge of perinatally HIV-infection, and compassion for underserved populations was invaluable and inspiring to me. I am also indebted to my committee members Drs Elena Bastida, Virginia McCoy, Mary-Jo Trepka and Ana Garcia. For your insightful comments and suggestions, thanks to you. Barbara Messick invited me to conduct this research. She and Dr. Ana Garcia have supported me every step of the way. Above all, I have learned what enormous challenges they face to help patients and their families cope with the consequences of HIV-infection. I admire their dedication, compassion, and wisdom. Thanks also to Dr. Gwendolyn Scott and the staff of the pediatric Special Immunology clinic for sharing their experiences, helping me to find information, and making me feel welcome. Extra appreciation is extended to the study participants. I hope their experiences represented in this research will be of benefit to others. Last but not least, many thanks to my family and friends. Without their love, company, support, and without the distractions they provided, I would not have accomplished much. Special gratitude to my guys Bill and Dries. Bill, who always is seeking for the truth and social justice, inspired me to try to make a difference while acknowledging the limits of research. And to Dries, who has matured into an accomplished, creative, and dynamic young man while I was in grad school, thanks for being you! iv

Transition of children with life-limiting conditions to adult care and healthcare use: a systematic review

“…Representativeness of study population. Five studies 53,[57][58][59][60] used pre-transition groups that were likely not representative of the larger population with the condition (e.g. they used data from a single clinic).…”

“…Controlling for differences between groups. Eight studies [55][56][57]59,60,[64][65][66] controlled for age or, where relevant, other differences between groups. Only three 53,56,66 controlled for severity of condition.…”

Adherence to treatment in young people with perinatal HIV infection in the first years after transition from pediatric to the adult medical service

“…В-третьих, сам по себе переход из детской -комплексной, компактной, ориентированной на ребенка, во взрослую, массовую, неиндивидуализированную службу является фактором риска нарушения приверженности и непрерывности лечения, в том числе и потому, что предполагает ряд изменений -изменение привычной модели диспансерного наблюдения, увеличение ответственности за планирование и управление своим здоровьем, снижение вовлеченности опекающего взрослого [8]. Зарубежные исследования показывают, что молодые люди при переходе из педиатрической службы во взрослую систему помощи по поводу ВИЧ-инфекции часто теряются из наблюдения, только 50% из них удерживаются в системе помощи [9][10][11].…”