RESUMO
OBJECTIVE: To elicit utility-based quality of life (QOL) of adolescent kidney transplant recipients. STUDY DESIGN: We measured QOL in adolescent transplant recipients by using a visual analog scale (VAS), and 2 utility-based QOL measures, the Health Utilities Index (HUI) Mark 2/3 (HUI2/3), and the time trade-off. Participants aged 11-19 years old were recruited from 5 transplantation centers in Australia. Mean scores were compared by using paired t tests, and linear multiple regression was used to define predictors for time trade-off QOL weights. RESULTS: Twenty-six adolescents participated in the study. On a scale with extremes of 0 (death) and 1 (full health), the participants had a mean (SD) time trade-off QOL weight of 0.99 ± 0.01 and HUI2/3 utility scores of 0.86 ± 0.16 and 0.85 ± 0.21, respectively. Time trade-off values were significantly higher than HUI Mark 2 values (P = .01) and HUI Mark 3 values (P = .02). From the HUI measure, decrements were observed in specific QOL domains, including vision, emotion (depression and anxiety), cognition, and pain. CONCLUSION: Adolescent kidney transplant recipients had consistent and high values for their current QOL, which suggests that they perceive themselves to be close to full health. However, adequate emotional and cognitive support may improve their overall QOL.
Assuntos
Transplante de Rim/psicologia , Qualidade de Vida , Adolescente , Austrália , Criança , Estudos Transversais , Feminino , Nível de Saúde , Humanos , Modelos Lineares , Masculino , Inquéritos e Questionários , Adulto JovemRESUMO
OBJECTIVE: To describe the experiences of adolescents who underwent organ transplantation. STUDY DESIGN: We conducted a systematic review of qualitative studies that explored the experiences of adolescents who underwent organ transplantation. We searched 5 electronic databases (to week 3 of July 2008) and reference lists of relevant articles. RESULTS: Eighteen articles reporting the experiences of 313 adolescent organ transplant recipients were included. Five major themes were identified: (1) redefining identity (seeking normality, anxiety and disappointment, adopting a positive attitude, desiring independence); (2) family functioning (parental overprotection, sibling support); (3) social adjustment (support networks, peer rejection, maintaining schoolwork, participation in physical activities); (4) managing medical demands (assuming responsibility, dependence on caregivers, disruption to lifestyle, vigilant adherence, pain and discomfort); and (5) attitude toward the donor (obligation of gratitude, strengthened relationship, concerns about risks to donor). CONCLUSIONS: Although transplantation offers adolescents a better chance of survival and increased freedom and energy, it poses many challenges. A multifaceted response is needed to equip adolescent transplant recipients with skills and capacities to help them achieve a sense of normality, cope with fear of death and organ rejection, gain acceptance among their peers, build confidence in learning, and resolve relationship tensions with the living donor.