Association of site-specific and participant-specific factors with retention of children in a long-term pediatric HIV cohort study
Paige L Williams, Russell Van Dyke, Michelle Eagle, Dorothy Smith, Carol Vincent, Gregory Ciupak, James Oleske, George R Seage 3rd, PACTG 219C Team, Arlene Bardeguez, Arry Dieudonne, Linda Bettica, Juliette Johnson, Stephen I Pelton, Ellen R Cooper, Lauren Kay, Ann Marie Regan, Joseph A Church, Theresa Dunaway, Audra Deveikis, Jagmohan Batra, Susan Marks, Ilaisanee Fineanganofo, Margaret A Keller, Nasser Redjal, Spring Wettgen, Sheryl Sullivan, Nancy Hutton, Beth Griffith, Mary Joyner, Carolyn Keifer, Douglas Watson, John Farley, Mary E Paul, Chivon D Jackson, Faith Minglana, Heidi Schwarzwald, Kenneth M Boyer, Jamie Martinez, James B McAuley, Maureen Haak, Michael Brady, Katalin Koranyi, Jane Hunkler, Charon Callaway, Gwendolyn B Scott, Charles D Mitchell, Claudia Florez, Joan Gamber, Diane W Wara, Ann Petru, Nicole Tilton, Mica Muscat, Ann Petru, Teresa Courville, Karen Gold, Katherine Eng, Stephen A Spector, Rolando M Viani, Mary Caffery, Kimberly Norris, Margaret Donnelly, Kathleen McGann, Carole Mathison, John Swetnam, Tom Belhorn, Jean Eddleman, Betsy Pitkin, Vincent R Bonagura, Susan Schuval, Blanka Kaplan, Constance Colter, Elaine J Abrams, Maxine Frere, Delia Calo, William Borkowsky, Nagamah Deygoo, Maryam Minter, Seham Akleh, Diana Dobbins, Hans Spiegel, Ann J Melvin, Kathleen M Mohan, Michele Acker, Suzanne Phelps, Kenneth C Rich, Karen Hayani, Julia Camacho, Warren A Andiman, Leslie Hurst, Janette de Jesus, Donna Schroeder, Denise Ferraro, Jane Perillo, Michele Kelly, Sohail Rana, Helga Finke, Patricia Yu, Jhoanna Roa, Andrea Kovacs, James Homans, Michael Neely, LaShonda Spencer, Mobeen H Rathore, Ayesha Mirza, Kathy Thoma, Almer Mendoza, Ana M Puga, Guillermo Talero, James Blood, Stefanie Juliano, Geoffrey A Weinberg, Barbra Murante, Susan Laverty, Francis Gigliotti, Suzanne R Lavoie, Tima Y Smith, Aditya Gaur, Katherine Knapp, Nehali Patel, Marion Donohoe, Irma L Febo, Licette Lugo, Ruth Santos, Ibet Heyer, Steven D Douglas, Richard M Rutstein, Carol A Vincent, Patricia C Coburn, Jilly Foster, Janet Chen, Daniel Conway, Roberta Laguerre, Emma Stuard, Caroline Nubel, Stefan Hagmann, Murli Purswani, Mahrukh Bamji, Indu Pathak, Savita Manwani, Ekta Patel, Katherin Luzuriag, Richard Moriarty, Barbara W Stechenberg, Donna J Fisher, Alicia M Johnston, Maripat Toye, Juan C Salazar, Kirsten Fullerton, Gail Kara, Stuart Foshee, Chitra S Mani, Dennis L Murray, Christopher White, Mary Y Mancao, Benjamin Estrada, Ronald D Wilcox, Margarita Silio, Thomas Alchediak, Cheryl Borne, Shelia Bradford, Paige L Williams, Russell Van Dyke, Michelle Eagle, Dorothy Smith, Carol Vincent, Gregory Ciupak, James Oleske, George R Seage 3rd, PACTG 219C Team, Arlene Bardeguez, Arry Dieudonne, Linda Bettica, Juliette Johnson, Stephen I Pelton, Ellen R Cooper, Lauren Kay, Ann Marie Regan, Joseph A Church, Theresa Dunaway, Audra Deveikis, Jagmohan Batra, Susan Marks, Ilaisanee Fineanganofo, Margaret A Keller, Nasser Redjal, Spring Wettgen, Sheryl Sullivan, Nancy Hutton, Beth Griffith, Mary Joyner, Carolyn Keifer, Douglas Watson, John Farley, Mary E Paul, Chivon D Jackson, Faith Minglana, Heidi Schwarzwald, Kenneth M Boyer, Jamie Martinez, James B McAuley, Maureen Haak, Michael Brady, Katalin Koranyi, Jane Hunkler, Charon Callaway, Gwendolyn B Scott, Charles D Mitchell, Claudia Florez, Joan Gamber, Diane W Wara, Ann Petru, Nicole Tilton, Mica Muscat, Ann Petru, Teresa Courville, Karen Gold, Katherine Eng, Stephen A Spector, Rolando M Viani, Mary Caffery, Kimberly Norris, Margaret Donnelly, Kathleen McGann, Carole Mathison, John Swetnam, Tom Belhorn, Jean Eddleman, Betsy Pitkin, Vincent R Bonagura, Susan Schuval, Blanka Kaplan, Constance Colter, Elaine J Abrams, Maxine Frere, Delia Calo, William Borkowsky, Nagamah Deygoo, Maryam Minter, Seham Akleh, Diana Dobbins, Hans Spiegel, Ann J Melvin, Kathleen M Mohan, Michele Acker, Suzanne Phelps, Kenneth C Rich, Karen Hayani, Julia Camacho, Warren A Andiman, Leslie Hurst, Janette de Jesus, Donna Schroeder, Denise Ferraro, Jane Perillo, Michele Kelly, Sohail Rana, Helga Finke, Patricia Yu, Jhoanna Roa, Andrea Kovacs, James Homans, Michael Neely, LaShonda Spencer, Mobeen H Rathore, Ayesha Mirza, Kathy Thoma, Almer Mendoza, Ana M Puga, Guillermo Talero, James Blood, Stefanie Juliano, Geoffrey A Weinberg, Barbra Murante, Susan Laverty, Francis Gigliotti, Suzanne R Lavoie, Tima Y Smith, Aditya Gaur, Katherine Knapp, Nehali Patel, Marion Donohoe, Irma L Febo, Licette Lugo, Ruth Santos, Ibet Heyer, Steven D Douglas, Richard M Rutstein, Carol A Vincent, Patricia C Coburn, Jilly Foster, Janet Chen, Daniel Conway, Roberta Laguerre, Emma Stuard, Caroline Nubel, Stefan Hagmann, Murli Purswani, Mahrukh Bamji, Indu Pathak, Savita Manwani, Ekta Patel, Katherin Luzuriag, Richard Moriarty, Barbara W Stechenberg, Donna J Fisher, Alicia M Johnston, Maripat Toye, Juan C Salazar, Kirsten Fullerton, Gail Kara, Stuart Foshee, Chitra S Mani, Dennis L Murray, Christopher White, Mary Y Mancao, Benjamin Estrada, Ronald D Wilcox, Margarita Silio, Thomas Alchediak, Cheryl Borne, Shelia Bradford
Abstract
Minimizing loss to follow-up (LTFU) in long-term cohort studies is essential for reducing bias and maintaining statistical stability. However, factors associated with attrition of children in observational studies have received little attention. The authors used survival analysis methods to evaluate the association of participant and site characteristics with time to LTFU in a multicenter cohort study conducted in the United States of 2,693 human immunodeficiency virus (HIV)-infected and 1,370 HIV-exposed-but-uninfected children enrolled in 2000-2004. As of 2004, 91% of HIV-infected and 86% of uninfected children had been retained in the study. Among the HIV infected, factors associated with higher risk of LTFU included site prohibition of participant compensation, low caregiver educational level, age >15 years, and higher viral load, whereas death of a family member was associated with better retention. Among uninfected children, sites accruing low numbers of subjects, social worker responsible for retention, young age (1-2 years), and birth abnormalities were associated with higher risk of LTFU. Occurrences of certain stressful life events, such as a death in the family or financial instability, were associated with higher retention, but risk of LTFU increased when children started school or mothers began employment. Although participant characteristics are difficult to modify, the authors identified several potentially modifiable site practices that could be targeted to improve retention.
Conflict of interest statement
Conflict of interest: none declared.
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Source: PubMed