Past Funded Research Project – Medication Compliance

Decision Making in Adolescents and Young Adults Pre and Post-Heart Transplantation

Primary Investigators: Dr. Melissa Cousino-Hood, PhD

Institution: University of Michigan Medical Center

Funding began in 2016.

This study was funded in 2016, with a focus on medication adherence. Medication compliance is a tough issue with adolescents, and noncompliance causes the likelihood of graft failure to increase exponentially. This study looks at the psychosocial medicine behaviors in adolescents, to understand the reasons for noncompliance and thus improve education understanding, and increase medication compliance.


Please read below to learn more about this research project or click here to view the published report.

Adolescents and young adults undergoing heart transplantation experience risks of morbidity and mortality both pre- and post-transplant. To improve end-of-life care for this population, it is necessary to understand their medical and end-of-life decision-making preferences.

Aim 1: To examine adolescent/young adult decision-making involvement specific to heart transplant listing.

Aim 2: To characterize their preferences specific to medical and end-of-life decision making.

Consistent with their preferences, the majority of adolescent/young adult participants (82%) perceived a high level of involvement in the decision to be listed for transplant. Patient involvement in this decision was primarily by way of seeking advice or information from their parents and being asked to express their opinion from parents. Despite a preference among patients to discuss their prognosis and be involved in end-of-life decision making if seriously ill, only 42% of patients had discussed their end-of-life wishes with anyone. Few parents recounted having such discussions. Preferences regarding the timing and nature of end-of-life decision-making discussions varied. 

Although young people are involved in the decision to pursue heart transplantation, little attention is paid to involving them in discussions regarding end-of-life decision-making in a manner that is consistent with individual preferences.


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