tailieunhanh - báo cáo khoa học:" Experiences and barriers to Health-Related Quality of Life following liver transplantation: a qualitative analysis of the perspectives of pediatric patients and their parents"

Tuyển tập báo cáo các nghiên cứu khoa học quốc tế ngành y học dành cho các bạn tham khảo đề tài: Experiences and barriers to Health-Related Quality of Life following liver transplantation: a qualitative analysis of the perspectives of pediatric patients and their parents | Nicholas et al. Health and Quality of Life Outcomes 2010 8 150 http content 8 1 150 HEALTH AND QUALITY OF LIFE OUTCOMES RESEARCH Open Access Experiences and barriers to Health-Related Quality of Life following liver transplantation a qualitative analysis of the perspectives of pediatric patients and their parents David B Nicholas1 2 Anthony R Otley3 Rachel Taylor4 Anil Dhawan5 Susan Gilmour6 Vicky Lee Ng7 Abstract This paper examines health-related quality of life HRQOL experiences and barriers facing young people who have received a liver transplant LT . Semi-structured qualitative interviews were conducted with children and adolescents who have undergone LT and their parents. Findings indicate that LT fosters substantially improved child and adolescent HRQOL however young people also experience challenges such as difficulties with medication compliance self-management of care routines physical activity restrictions and undesirable medical procedures. Implications and recommendations for clinical practice and research are discussed. Long-term survival following orthotopic liver transplantation LT is now the rule rather than the exception for an increasing proportion of children with chronic or acute end-stage liver disease 1 . Accordingly assessment of outcomes after LT must consider not only the quantity of life years survived but also the lived experience and quality of life for these children and their families. Early reports of improved quality of life after LT in children relied on the presence or absence of conventional outcomes such as growth number of hospitalizations and disease symptoms without direct measurements of social educational and emotional benefits or impairments 2 . While life saving and enhancing quality of life LT is not curative in that a fatal disease is replaced by a chronic condition that introduces morbidities such as renal dysfunction risk of de novo malignancies and a life-long need for immunosuppression. These challenges