Objective: The advances made in the surgical and postnatal treatment of congenital diaphragmatic hernia (CDH) have considerably improved patient survival, but morbidity remains significant. The objective of this study was to analyze the effect these sequels have on the health-related quality of life (HRQL) of adolescents and young adults who have survived CDH, and to compare it with that of the general population.
Materials and methods: A transversal descriptive study of patients diagnosed with CDH in our institution from 1997 to 2004 was carried out. Survival, location, hernia size, herniated organs, need for extracorporeal membrane oxygenation, and mechanical ventilation time were analyzed. In addition, a comparative study of the current HRQL of survivors was conducted using the SF-36 survey (36-Item Health Survey Short Form), which assessed physical function, physical role, body pain, general health, vitality, social function, emotional role, and mental health. Data of 24 healthy adolescents was used as a control group.
Results: Of the 29 survivors (70.7%), 21 were successfully contacted, and 16 responded to the survey. They all claimed their overall quality of life was good or very good. The group of adolescents who underwent CDH surgical repair had better results in the vitality (p= 0.001) and mental health (p<0.05) areas, but the overall HRQL score and the remaining health areas were similar. No significant differences were found regarding diaphragmatic size or need for ECMO.
Conclusion: According to adolescent survivors who underwent CDH surgical repair, their quality of life is similar to that of other individuals of their age. Our results are encouraging and may prove useful for future parents of CDH patients.
Objetivo: Los avances en el tratamiento quirúrgico y posnatal han mejorado significativamente la supervivencia de pacientes con hernia diafragmática congénita (HDC). La morbilidad asociada sigue siendo significativa. El objetivo del estudio es evaluar efecto de estas secuelas sobre la calidad de vida relacionada con la salud (CVRS) de adolescentes y adultos jóvenes supervivientes de HDC y compararla con la población general.
Material y metodos: Estudio descriptivo transversal de pacientes diagnosticados de HDC entre 1997 y 2004. Supervivencia, localización, tamaño de la hernia, órganos herniados, necesidad de oxigenación por membrana extracorpórea, tiempo de ventilación mecánica. Estudio comparativo de CVRS actual de pacientes supervivientes mediante la encuesta SF-36 (36-Item Health Survey Short Form): función física, rol físico, dolor corporal, salud general, vitalidad, función social, rol emocional, salud mental. Utilizamos datos de 24 adolescentes sanos como grupo control.
Resultados: De los 29 supervivientes (70,7%), fueron localizados 21 y contestaron la encuesta 16, que consideraron tener una calidad de vida global buena o muy buena. El grupo de adolescentes intervenidos tuvieron mejores resultados en las esferas de vitalidad (p = 0,001) y salud mental (p<0,05), pero la puntuación de la CVRS global y el resto de dimensiones de salud fueron similares. No se objetivaron diferencias significativas en relación con el tamaño diafragmático ni la necesidad de ECMO.
Conclusiones: Los adolescentes supervivientes intervenidos de HDC consideran tener una calidad de vida similar a jóvenes de su misma edad. Los resultados de nuestro estudio son alentadores y permiten un mejor asesoramiento para futuros pacientes con HDC.
Keywords: Congenital diaphragmatic hernia; Extracorporeal membrane oxygenation; Health-related quality of life; Long-term survivors.