Adherence and health‐related quality of life in adolescent liver transplant recipients

Abstract

Adolescence is a particularly high-risk period for non-adherence with post-transplant medical regimens. There remains a lack of research investigating factors related to non-adherence in adolescent LT recipients. The present study empirically assessed the relationship between adherence and HRQOL in adolescent LT recipients. Participants included 25 adolescents (mean = 15.1 yr, range 12-17.9) and their parent/guardian(s). Adherence was assessed using multiple indices including clinician-conducted interviews, rate of clinic attendance, and s.d. of consecutive tacrolimus blood levels. HRQOL was examined using self-report and parent-proxy report on well-validated assessment measures. Results indicated that 76% of participants were non-adherent on at least one measure of adherence, and HRQOL was significantly lower than normative data for healthy children. Tacrolimus s.d. were significant related to poor HRQOL across domains of physical, school, and social functioning. Non-adherent adolescents reported poorer health perceptions, self-esteem, mental health, family cohesion, and more limitations in social and school activities related to physical, emotional, and behavioral problems. These results suggest that empirically based assessment of HRQOL may help identify those at highest risk for behavior, emotional and school difficulties, as well as non-adherence. The examination of tacrolimus s.d. may also help identify patients who may benefit from intervention to promote adherence and HRQOL. Prospective investigations are necessary to further identify the impact of HRQOL on adherence and long-term health outcomes to further guide clinical intervention.

Study of the Factors Affecting Health-Related Quality of Life in Adolescents After Liver Transplantation

“…(8). This has been confirmed in later studies (9)(10)(11). However, these studies fail to take neurodevelopment into consideration and assume the psychological perception of a child is the same as that of an adolescent.…”

“…Furthermore, a majority of studies rely on parent report rather than self-report, which has shown to be an unreliable method of assessing HRQL (12,13). The limitations of published studies notwithstanding, attempts to identify factors associated with reduced quality of life (QoL) have been described previously (9,(14)(15)(16) (17) and was based on a structured definition of HRQL specific to young people (18 (20) and has been used in previous studies of HRQL in children after LT (9)(10)(11)(14)(15)(16)21 …”

“…Young people after LT had comparable total scores to the general population for self-esteem and emotional state; however, they scored significantly worst on the measure of behavior (total score). (10,16,43). Possible explanations are the use of incentive payments to participate (10) and the use of different normative reference groups.…”

Immunosuppressant Therapy Adherence Scale for Transplant Recipients: The Study of Validity and Reliability

“…[2][3][4][5][6][7][8][9][10][11] Reasons for nonadherence are varied and include, but are not limited to, high costs of IST, adverse drug effects, confusion regarding dosing schedule, psychiatric disorders, beliefs that IST is not effective, health care and work related problems, traveling away from home, and changes in recommended doses of therapy. 4,[11][12][13][14][15] Although various methods have been used to assess nonadherence, no one measure is currently considered the gold standard. 16 To implement strategic interventions targeting IST nonadherence in practice-based settings, measures of nonadherence are needed that are valid and reliable as well as inexpensive, practical, and easily administered.…”

Advancing Transplantation

“…It is considered to be a downside of maturation as the process of developing autonomy, separating from parents and assimilating with peers progresses. 151 Education and convenience of the immunosuppressive regimen are core to the cause of promoting drug adherence. The latter is aided by the least possible number of medications and time points during the day when these need to be taken.…”