RESUMEN
OBJECTIVES: To examine changes in transition readiness (knowledge, self-efficacy, self-management) over time and explore factors associated with transition readiness, including psychosocial quality of life (QOL) and health service utilization in teens/young adults with congenital heart disease. STUDY DESIGN: In a multicenter prospective cohort study, 356 patients, age 14-27 years, completed transition readiness and QOL assessments at routine cardiology visits at baseline and 1-year follow-up. RESULTS: Median patient age was 19.8 years at 1.03 years (IQR 0.98-1.24) following baseline transition readiness assessment. Average knowledge deficit scores decreased at follow-up (P < .0001) and self-efficacy scores increased (P < .0001). Self-management scores increased (P < .0001), but remained low (mean 57.7, 100-point scale). Information was requested by 73% of patients at baseline and was associated with greater increase in knowledge at follow-up (P = .005). Increased knowledge (P = .003) and perceived self-efficacy (P = .01) were associated with improved psychosocial QOL, but not health service utilization at follow-up. Patients who preferred face-to-face information from healthcare providers (47%) vs other information sources were more likely to request information (P < .0001). In patients <18 years old, greater agreement between teen and parental perception of teen's knowledge was associated with greater increase in patient knowledge (P = .02) and self-efficacy (P = .003). CONCLUSION: Transition readiness assessment demonstrated improved knowledge, self-efficacy, and self-management at 1-year follow-up in teens/young adults with congenital heart disease. Improved knowledge and self-efficacy were associated with improved psychosocial QOL. Self-management remained low. Supplemental media for conveying information and greater involvement of parents may be needed to optimize transition readiness.
Asunto(s)
Conocimientos, Actitudes y Práctica en Salud , Cardiopatías Congénitas/epidemiología , Autoeficacia , Automanejo , Transición a la Atención de Adultos , Adolescente , Adulto , Estudios de Cohortes , Servicio de Urgencia en Hospital/estadística & datos numéricos , Femenino , Hospitalización/estadística & datos numéricos , Humanos , Conducta en la Búsqueda de Información , Masculino , Educación del Paciente como Asunto , Prioridad del Paciente , Calidad de Vida , Adulto JovenRESUMEN
OBJECTIVES: We previously reported common knowledge deficits and lack of transition readiness in 13- 25-year-olds with congenital or acquired heart disease. The aims of this study were to re-evaluate transition readiness in this cohort at follow-up and to examine the relationship between changes in transition readiness and quality of life (QOL). STUDY DESIGN: In this prospective cohort study, patients completed the Transition Readiness Assessment and the Pediatric Quality of Life Inventory using an e-tablet, web-based format at a routine follow-up visit. Changes from initial to follow-up scores were evaluated. RESULTS: Sixty-five percent of patients (106 of 164) completed follow-up assessments at a median age of 18.7 years (IQR, 16.5-21.2 years) at a median follow-up of 1 year. The average perceived knowledge deficit score (percent of items with no knowledge) at follow-up was 18.0 ± 15.2%, which decreased from 24.7 ± 16.5% (P < .0001). On a 100-point scale, the mean score for self-efficacy increased from 71.4 ± 17.0 to 76.7 ± 18.2 (P = .0004) and for self-management increased from 47.9 ± 18.4 to 52.0 ± 20.7 (P = .004). Although physical QOL did not change, the mean psychosocial QOL score increased significantly (P = .02). A decrease in the knowledge deficit score at follow-up was significantly associated with an increased psychosocial QOL score (P = .03). An increase in the self-efficacy score was associated with an increase in psychosocial QOL score (P = .04), especially social QOL (P = .02). CONCLUSIONS: Although deficits in knowledge and self-management skills persist, transition readiness assessment and recognition of deficits can improve transition readiness with improved psychosocial QOL.
Asunto(s)
Conocimientos, Actitudes y Práctica en Salud , Cardiopatías Congénitas/psicología , Calidad de Vida , Transición a la Atención de Adultos , Adolescente , Adulto , Femenino , Cardiopatías Congénitas/terapia , Humanos , Masculino , Estudios Prospectivos , Autoeficacia , Automanejo/psicología , Encuestas y Cuestionarios , Adulto JovenRESUMEN
BACKGROUND: There is a lack of valid health care transition readiness (HCT) scales in Spanish. OBJECTIVE: To provide initial validation of the UNC TRxANSITION Scale™ among Mexican adolescents and young adults (youth) with chronic kidney disease (CKD). METHODS: We used the professionally translated/back translated, provider-administered UNC TRxANSITION Scale™ (Ferris et al., 2012). This 33-question scale measures HCT in ten sub-scales including knowledge about diagnosis or treatment, diet, reproductive health, school/work, insurance, ability to self-manage and looking for new health providers. Its maximum score is 10. We enrolled 163 Mexican adolescents (48.5% females) with CKD stage≥3, mean age of 15.1years (±2.1) and whose primary language is Spanish. There were 15 patients on hemodialysis (9.2%) and 30 transplant recipients (18.4%). Results were compared to those reported in adolescents with chronic conditions from the USA. RESULTS: Our cohort's overall median total score was 5.9. Patients≥16years old had a median total score of 6.4, whereas younger patients had median score of 5.6 (p<0.05). Transplant patients had greater scores in the total and the sub-scales of medication knowledge, issues of reproduction, insurance, trade/work and adherence (p<0.05). When comparing the total score (by age), results from our Mexican youth were similar to those reported in youth from the USA. CONCLUSIONS: In our Mexican cohort of youth with CKD, health care transition readiness is greater in older patients and in transplant recipients. Our cohort's overall score is low, indicating the need for a health care transition preparation program. The UNC TRxANSITION Scale™ results in Mexican youth with CKD are comparable to findings in youth from the USA.