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2. The Fontan Udenafil Exercise Longitudinal Trial: Subgroup Analysis

Author

Goldberg, David J., Hu, Chenwei, Lubert, Adam M., Rathod, Rahul H., Penny, Daniel J., Petit, Christopher J., Schumacher, Kurt R., Ginde, Salil, Williams, Richard V., Yoon, J. K., Kim, Gi Beom, Nowlen, Todd T., DiMaria, Michael V., Frischhertz, Benjamin P., Wagner, Jonathan B., McHugh, Kimberly E., McCrindle, Brian W., Cartoski, Mark J., Detterich, Jon A., Yetman, Anji T., John, Anitha S., Richmond, Marc E., Yung, Delphine, Payne, R. Mark, Mackie, Andrew S., Davis, Christopher K., Shahanavaz, Shabana, Hill, Kevin D., Almaguer, Marisa, Zak, Victor, McBride, Michael G., Goldstein, Bryan H., Pearson, Gail D., and Paridon, Stephen M.

Published
2023
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4. Texting Teens in Transition: The Use of Text Messages in Clinical Intervention Research

Author

Rempel, Gwen R, Ballantyne, Ross T, Magill-Evans, Joyce, Nicholas, David B, and Mackie, Andrew S

Subjects
Information technology, T58.5-58.64, Public aspects of medicine, RA1-1270
Abstract

BackgroundThe rapidly growing population of young adults living with congenital heart disease (CHD), currently challenging ill-prepared cardiac care systems, presents a novel population in which to consider the use of mHealth. This methodological study was part of a larger study that tested the effectiveness of a clinic-based nursing intervention to prepare teens for transfer from pediatric to adult cardiology care. The intervention included creation of a MyHealth Passport and subsequently SMS (short message service) text messages between the intervention nurse and study participant. ObjectiveOur aim was to determine (1) the preference of teens with CHD to be contacted via text message following the nursing intervention, (2) the effectiveness of texting to collect data regarding the use of MyHealth Passport after participation in the intervention, (3) the nature of the texting interaction, and (4) the risks and benefits of texting. MethodsParticipants were recruited through the intervention study (n=24) by either choosing to receive information from the study coordinator through text message, or texting a question to the study nurses. Inclusion criteria were age 15-17 years, diagnosed with moderate or complex heart disease, and currently being followed by the Division of Cardiology at Stollery Children’s Hospital. Exclusion criteria were heart transplantation and/or less than a 6th grade reading and comprehension ability. Text message transcripts were analyzed by qualitative inductive content analysis. ResultsTwo-thirds of teens (16/24, 67%) chose text messaging as their preferred contact, making them eligible for the study. Texting was effective in collecting information regarding the MyHealth Passport; all but one teen had their MyHealth Passport on them, and many reported carrying it with them wherever they went. All teens reported showing their MyHealth Passport to at least one person. Seven themes were identified in the texting transcripts: mixing formal and informal language, the passive teen, interaction with health care providers, texting teens in transition, texting as a mechanism to initiate other forms of communication, affirmation, and the nurse as an educator. Benefits of texting were identified as flexibility, ability to respond over time, information presented in byte-sized amounts, and information directly related to patient questions. Risks of texting were identified as the possibility that interactions may not be in-depth, distraction of teen and researcher, and invasiveness. ConclusionsText messaging was useful in collecting data regarding the use of the MyHealth Passport. Text messaging resulted in conversations with the teens that were sometimes in-depth and meaningful, especially when combined with other communication modalities. Using text messaging in a manner resulting in full conversations with the patients requires more study and may benefit from protocols and the use of solid theoretical foundations that would standardize the interaction so that more conclusions could be drawn.

Published
2014
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9. Anxiety and Depression in Adults With Congenital Heart Disease

Author

Kovacs, Adrienne H., Luyckx, Koen, Thomet, Corina, Budts, Werner, Enomoto, Junko, Sluman, Maayke A., Lu, Chun-Wei, Jackson, Jamie L., Khairy, Paul, Cook, Stephen C., Chidambarathanu, Shanthi, Alday, Luis, Estensen, Mette-Elise, Dellborg, Mikael, Berghammer, Malin, Johansson, Bengt, Mackie, Andrew S., Menahem, Samuel, Caruana, Maryanne, Veldtman, Gruschen, Soufi, Alexandra, Jameson, Susan M., Callus, Edward, Kutty, Shelby, Oechslin, Erwin, Van Bulck, Liesbet, and Moons, Philip

Published
2024
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12. The Effect of Udenafil on Heart Rate and Blood Pressure in Adolescents With the Fontan Circulation

Author

Edelson, Jonathan B., Zak, Victor, Goldberg, David, Fleming, Greg, Mackie, Andrew S., Patel, Jyoti K., Files, Matthew, Downing, Tacy, Richmond, Marc, Acheampong, Ben, Cartoski, Mark, Detterich, Jon, McCrindle, Brian, McHugh, Kimberly, Hansen, Jesse E, Wagner, Jonathan, Maria, Michael Di, Weingarten, Angela, Nowlen, Todd, Yoon, Ja Kyoung, Kim, Gi Beom, Williams, Richard, Whitehill, Robert, Kirkpatrick, Edward, Yin, Suellen, Ermis, Peter, Lubert, Adam M, Stylianou, Mario, Freemon, D'Andrea, Hu, Chenwei, Garuba, Olukayode D., Frommelt, Peter, Goldstein, Bryan H., Paridon, Stephen, and Garg, Ruchira

Published
2024
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17. Medium-Term Complications Associated With Coronary Artery Aneurysms After Kawasaki Disease: A Study From the International Kawasaki Disease Registry.

Author

McCrindle, Brian W, Manlhiot, Cedric, Newburger, Jane W, Harahsheh, Ashraf S, Giglia, Therese M, Dallaire, Frederic, Friedman, Kevin, Low, Tisiana, Runeckles, Kyle, Mathew, Mathew, Mackie, Andrew S, Choueiter, Nadine F, Jone, Pei-Ni, Kutty, Shelby, Yetman, Anji T, Raghuveer, Geetha, Pahl, Elfriede, Norozi, Kambiz, McHugh, Kimberly E, Li, Jennifer S, De Ferranti, Sarah D, Dahdah, Nagib, and International Kawasaki Disease Registry *

Subjects
International Kawasaki Disease Registry *, Coronary Vessels, Humans, Coronary Aneurysm, Mucocutaneous Lymph Node Syndrome, Registries, Risk Assessment, Retrospective Studies, Child, Child, Preschool, Infant, Female, Male, Kawasaki disease, cardiovascular outcomes, coronary artery, risk factors, Prevention, Cardiovascular, Heart Disease - Coronary Heart Disease, Heart Disease, Cardiorespiratory Medicine and Haematology
Abstract

Background Coronary artery aneurysms (CAAs) may occur after Kawasaki disease (KD) and lead to important morbidity and mortality. As CAA in patients with KD are rare and heterogeneous lesions, prognostication and risk stratification are difficult. We sought to derive the cumulative risk and associated factors for cardiovascular complications in patients with CAAs after KD. Methods and Results A 34-institution international registry of 1651 patients with KD who had CAAs (maximum CAA Z score ≥2.5) was used. Time-to-event analyses were performed using the Kaplan-Meier method and Cox proportional hazard models for risk factor analysis. In patients with CAA Z scores ≥10, the cumulative incidence of luminal narrowing (>50% of lumen diameter), coronary artery thrombosis, and composite major adverse cardiovascular complications at 10 years was 20±3%, 18±2%, and 14±2%, respectively. No complications were observed in patients with a CAA Z score

Published
2020

20. Protocol for READY2Exit: a patient-oriented, mixed methods study examining transition readiness in adolescents with co-occurring physical and mental health conditions

Author

Allemang Brooke, Samuel Susan, Sitter Kathleen C., Patten Scott B., Patton Megan, Pintson Karina, Greer Katelyn, Schofield Keighley, Farias Marcela, Punjwani Zoya, Mackie Andrew S., and Dimitropoulos Gina

Subjects
mental health, mixed methods, patient-oriented research, transition to adult care, youth engagement, Pediatrics, RJ1-570
Abstract

Up to 57% of adolescents and young adults (AYA) with chronic physical health conditions experience mental health conditions, the presence of which contributes to increased morbidity and poor quality of life. AYA with co-occurring physical and mental health conditions, therefore, may experience additional challenges as they transition from pediatric to adult services. While transition readiness – the acquisition of self-management and advocacy skills – contributes to successful transitions to adult care, this concept has not been adequately explored for AYA with co-occurring physical and mental health conditions. Research is needed to identify whether the presence of a mental health comorbidity is associated with transition readiness, and what the experiences of AYA with co-occurring conditions are as they exit pediatric services. This paper outlines the protocol for the Readiness and Experiences of ADolescents and Young Adults with Co-occurring Physical and Mental Health Conditions Exiting Pediatric Services (READY2Exit) study; the first study to address this gap using a patient-oriented, mixed methods design.

Published
2022
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23. Pain in adults with congenital heart disease - An international perspective

Author

Leibold, Allison, Eichler, Erin, Chung, Sukyung, Moons, Philip, Kovacs, Adrienne H., Luyckx, Koen, Apers, Silke, Thomet, Corina, Budts, Werner, Enomoto, Junko, Sluman, Maayke A., Wang, Jou-Kou, Jackson, Jamie L., Khairy, Paul, Cook, Stephen C., Chidambarathanu, Shanthi, Alday, Luis, Oechslin, Erwin, Eriksen, Katrine, Dellborg, Mikael, Berghammer, Malin, Johansson, Bengt, Mackie, Andrew S., Menahem, Samuel, Caruana, Maryanne, Veldtman, Gruschen, Soufi, Alexandra, White, Kamila, Callus, Edward, Kutty, Shelby, and Fernandes, Susan M.

Published
2021
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26. Atrial arrhythmias and patient-reported outcomes in adults with congenital heart disease: An international study

Author

Casteigt, Benjamin, Samuel, Michelle, Laplante, Laurence, Shohoudi, Azadeh, Apers, Silke, Kovacs, Adrienne H., Luyckx, Koen, Thomet, Corina, Budts, Werner, Enomoto, Junko, Sluman, Maayke A., Lu, Chun-Wei, Jackson, Jamie L., Cook, Stephen C., Chidambarathanu, Shanthi, Alday, Luis, Eriksen, Katrine, Dellborg, Mikael, Berghammer, Malin, Johansson, Bengt, Mackie, Andrew S., Menahem, Samuel, Caruana, Maryanne, Veldtman, Gruschen, Soufi, Alexandra, Fernandes, Susan M., White, Kamila, Callus, Edward, Kutty, Shelby, Brouillette, Judith, Moons, Philip, and Khairy, Paul

Published
2021
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27. Patient-Reported Outcomes in Adults With Congenital Heart Disease Following Hospitalization (from APPROACH-IS)

Author

Moons, Philip, Luyckx, Koen, Thomet, Corina, Budts, Werner, Enomoto, Junko, Sluman, Maayke A., Wang, Jou-Kou, Jackson, Jamie L., Khairy, Paul, Cook, Stephen C., Chidambarathanu, Shanthi, Alday, Luis, Oechslin, Erwin, Eriksen, Katrine, Dellborg, Mikael, Berghammer, Malin, Johansson, Bengt, Mackie, Andrew S., Menahem, Samuel, Caruana, Maryanne, Veldtman, Gruschen, Soufi, Alexandra, Fernandes, Susan M., White, Kamila, Callus, Edward, Kutty, Shelby, Apers, Silke, and Kovacs, Adrienne H.

Published
2021
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28. Physical Functioning, Mental Health, and Quality of Life in Different Congenital Heart Defects: Comparative Analysis in 3538 Patients From 15 Countries

Author

Moons, Philip, Luyckx, Koen, Thomet, Corina, Budts, Werner, Enomoto, Junko, Sluman, Maayke A., Lu, Chun-Wei, Jackson, Jamie L., Khairy, Paul, Cook, Stephen C., Chidambarathanu, Shanthi, Alday, Luis, Eriksen, Katrine, Dellborg, Mikael, Berghammer, Malin, Johansson, Bengt, Mackie, Andrew S., Menahem, Samuel, Caruana, Maryanne, Veldtman, Gruschen, Soufi, Alexandra, Fernandes, Susan M., White, Kamila, Callus, Edward, Kutty, Shelby, Ombelet, Fouke, Apers, Silke, and Kovacs, Adrienne H.

Published
2021
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31. Low-Molecular-Weight Heparin vs Warfarin for Thromboprophylaxis in Children With Coronary Artery Aneurysms After Kawasaki Disease: A Pragmatic Registry Trial

Author

Altman, Carolyn A., Anderson, Brett R., Braunlin, Elizabeth, Burns, Jane C., Carr, Michael R., Choueiter, Nadine F., Colyer, Jessica H., Crean, Andrew, Dempsey, Adam, Desjardins, Laurent, Dillenburg, Rejane, Dionne, Audrey, Ferris, Anna, Gewitz, Michael, Grcic, Michelle M., Greenway, Steven C., Hamel-Perrault, Elodie, Harris, Kevin C., Hayden-Rush, Christina, Hill, Kevin D., Jain, Supriya, Jone, Pei-Ni, Kimball, Thomas R., Lang, Sean M., Li, Jennifer S., Lin, Ming-Tai, Mahle, William T., McHugh, Kimberly E., Portman, Michael A., Renaud, Claudia, Sexson Tejitel, S. Kristen, Szmuszkovicz, Jacqueline R., Texter, Karen M., Thacker, Deepika, Selamet Tierney, Elif Seda, Thomas, Thomas, Tremoulet, Adriana H., Wagner-Lees, Sharon, Warren, Andrew, Manlhiot, Cedric, Newburger, Jane W., Low, Tisiana, Dahdah, Nagib, Mackie, Andrew S., Raghuveer, Geetha, Giglia, Therese M., Dallaire, Frederic, Mathew, Mathew, Runeckles, Kyle, Pahl, Elfriede, Harahsheh, Ashraf S., Norozi, Kambiz, de Ferranti, Sarah D., Friedman, Kevin, Yetman, Anji T., Kutty, Shelby, Mondal, Tapas, and McCrindle, Brian W.

Published
2020
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33. Implantable cardioverter-defibrillators and patient-reported outcomes in adults with congenital heart disease: An international study

Author

Lévesque, Valérie, Laplante, Laurence, Shohoudi, Azadeh, Apers, Silke, Kovacs, Adrienne H., Luyckx, Koen, Thomet, Corina, Budts, Werner, Enomoto, Junko, Sluman, Maayke A., Lu, Chun-Wei, Jackson, Jamie L., Cook, Stephen C., Chidambarathanu, Shanthi, Alday, Luis, Eriksen, Katrine, Dellborg, Mikael, Berghammer, Malin, Johansson, Bengt, Mackie, Andrew S., Menahem, Samuel, Caruana, Maryanne, Veldtman, Gruschen, Soufi, Alexandra, Fernandes, Susan M., White, Kamila, Callus, Edward, Kutty, Shelby, Brouillette, Judith, Casteigt, Benjamin, Moons, Philip, and Khairy, Paul

Published
2020
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36. Prevalence and Effects of Cigarette Smoking, Cannabis Consumption, and Co-use in Adults From 15 Countries With Congenital Heart Disease

Author

Moons, Philip, Luyckx, Koen, Kovacs, Adrienne H., Holbein, Christina E., Thomet, Corina, Budts, Werner, Enomoto, Junko, Sluman, Maayke A., Yang, Hsiao-Ling, Jackson, Jamie L., Khairy, Paul, Cook, Stephen C., Chidambarathanu, Shanthi, Alday, Luis, Eriksen, Katrine, Dellborg, Mikael, Berghammer, Malin, Johansson, Bengt, Mackie, Andrew S., Menahem, Samuel, Caruana, Maryanne, Veldtman, Gruschen, Soufi, Alexandra, Fernandes, Susan M., White, Kamila, Callus, Edward, Kutty, Shelby, and Apers, Silke

Published
2019
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38. Differential impact of physical activity type on depression in adults with congenital heart disease: A multi-center international study

Author

Ko, Jong Mi, White, Kamila S., Kovacs, Adrienne H., Tecson, Kristen M., Apers, Silke, Luyckx, Koen, Thomet, Corina, Budts, Werner, Enomoto, Junko, Sluman, Maayke A., Wang, Jou-Kou, Jackson, Jamie L., Khairy, Paul, Cook, Stephen C., Chidambarathanu, Shanthi, Alday, Luis, Eriksen, Katrine, Dellborg, Mikael, Berghammer, Malin, Johansson, Bengt, Mackie, Andrew S., Menahem, Samuel, Caruana, Maryanne, Veldtman, Gruschen, Soufi, Alexandra, Fernandes, Susan M., Callus, Edward, Kutty, Shelby, Moons, Philip, and Cedars, Ari M.

Published
2019
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39. Perceived Health Mediates Effects of Physical Activity on Quality of Life in Patients With a Fontan Circulation

Author

Holbein, Christina E., Veldtman, Gruschen R., Moons, Philip, Kovacs, Adrienne H., Luyckx, Koen, Apers, Silke, Chidambarathanu, Shanti, Soufi, Alexandra, Eriksen, Katrine, Jackson, Jamie L., Enomoto, Junko, Fernandes, Susan M., Johansson, Bengt, Alday, Luis, Dellborg, Mikael, Berghammer, Malin, Menahem, Samuel, Caruana, Maryanne, Kutty, Shelby, Mackie, Andrew S., Thomet, Corina, Budts, Werner, White, Kamila, Sluman, Maayke A., Callus, Edward, Cook, Stephen C., Khairy, Paul, and Cedars, Ari

Published
2019
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40. Religion and spirituality as predictors of patient-reported outcomes in adults with congenital heart disease around the globe

Author

Moons, Philip, Luyckx, Koen, Dezutter, Jessie, Kovacs, Adrienne H., Thomet, Corina, Budts, Werner, Enomoto, Junko, Sluman, Maayke A., Yang, Hsiao-Ling, Jackson, Jamie L., Khairy, Paul, Subramanyan, Raghavan, Alday, Luis, Eriksen, Katrine, Dellborg, Mikael, Berghammer, Malin, Johansson, Bengt, Mackie, Andrew S., Menahem, Samuel, Caruana, Maryanne, Veldtman, Gruschen, Soufi, Alexandra, Fernandes, Susan M., White, Kamila, Callus, Edward, Kutty, Shelby, and Apers, Silke

Published
2019
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41. Physical Activity-Related Drivers of Perceived Health Status in Adults With Congenital Heart Disease

Author

Ko, Jong Mi, White, Kamila S., Kovacs, Adrienne H., Tecson, Kristen M., Apers, Silke, Luyckx, Koen, Thomet, Corina, Budts, Werner, Enomoto, Junko, Sluman, Maayke A., Wang, Jou-Kou, Jackson, Jamie L., Khairy, Paul, Cook, Stephen C., Subramanyan, Raghavan, Alday, Luis, Eriksen, Katrine, Dellborg, Mikael, Berghammer, Malin, Johansson, Bengt, Mackie, Andrew S., Menahem, Samuel, Caruana, Maryanne, Veldtman, Gruschen, Soufi, Alexandra, Fernandes, Susan M., Callus, Edward, Kutty, Shelby, Gandhi, Amarendra, Moons, Philip, and Cedars, Ari M.

Published
2018
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43. Transition Intervention for Adolescents With Congenital Heart Disease

Author

Mackie, Andrew S., Rempel, Gwen R., Kovacs, Adrienne H., Kaufman, Miriam, Rankin, Kathryn N., Jelen, Ahlexxi, Yaskina, Maryna, Sananes, Renee, Oechslin, Erwin, Dragieva, Dimi, Mustafa, Sonila, Williams, Elina, Schuh, Michelle, Manlhiot, Cedric, Anthony, Samantha J., Magill-Evans, Joyce, Nicholas, David, and McCrindle, Brian W.

Published
2018
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44. Patient-reported outcomes in adults with congenital heart disease: Inter-country variation, standard of living and healthcare system factors

Author

Moons, Philip, Kovacs, Adrienne H., Luyckx, Koen, Thomet, Corina, Budts, Werner, Enomoto, Junko, Sluman, Maayke A., Yang, Hsiao-Ling, Jackson, Jamie L., Khairy, Paul, Cook, Stephen C., Subramanyan, Raghavan, Alday, Luis, Eriksen, Katrine, Dellborg, Mikael, Berghammer, Malin, Johansson, Bengt, Mackie, Andrew S., Menahem, Samuel, Caruana, Maryanne, Veldtman, Gruschen, Soufi, Alexandra, Fernandes, Susan M., White, Kamila, Callus, Edward, Kutty, Shelby, Van Bulck, Liesbet, and Apers, Silke

Published
2018
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47. Transition readiness of youth with co‐occurring chronic health and mental health conditions: A mixed methods study

Author

Allemang, Brooke, primary, Samuel, Susan, additional, Greer, Katelyn, additional, Schofield, Keighley, additional, Pintson, Karina, additional, Patton, Megan, additional, Farias, Marcela, additional, Sitter, Kathleen C., additional, Patten, Scott B., additional, Mackie, Andrew S., additional, and Dimitropoulos, Gina, additional

Published
2023
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48. Best Practices in Transitional Care

Author

Lopez, Keila N., Mackie, Andrew S., Chessa, Massimo, Series editor, Baumgartner, Helmut, Series editor, Eicken, Andreas, Series editor, Giamberti, Alessandro, Series editor, Schwerzmann, Markus, editor, Thomet, Corina, editor, and Moons, Philip, editor

Published
2016
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