作者: Stacey V Konidis , Alexander Hrycko , Scott Nightingale , Eberhard Renner , Leslie Lilly
DOI: 10.1093/PCH/20.4.189
关键词:
摘要: In 2015, liver transplantation (LT) is the established standard of care for infants, children and adults with end-stage disease, as well other primary indications including paediatric acute failure, tumours liver-based metabolic conditions (1). With a 10-year patient survival rate >80% (2), focus by health teams involved in this population has appropriately shifted to enhancing understanding medical, psychosocial physical post-transplantation complications (3), health-related quality life (HRQOL) (4,5). Quality (QOL) defined WHO “individuals’ perception their position context culture value systems which they live relation goals, expectations, standards concerns” (6). HRQOL quantitative or qualitative self-assessment measuring an individual’s physical, functional, social psychological dimensions (7). Despite excellent long-term rates, only 32% survivors achieved ‘ideal’ outcome following LT (ie, still alive first graft on immunosuppression monotherapy, normal laboratory test results, unimpaired linear growth absence most common medical comorbidities) (2). Most studies conducted date report that generally improves after compared pre-LT; however, follow-up times have mainly been short term (8–12). Paediatric recipients found self-report HRQOLs are lower comparison healthy (8,9,11–15), but comparable chronic illnesses such diabetes asthma Clearly, attention strategies improve warranted. Dommergues et al (16) QOL status 116 reaching adulthood be controls, although these exhibited disturbances many years expressed anxiety about recurrence negative thoughts, limitation freedom feelings loneliness). another study evaluating 37 young two decades LT, validated generic tools revealed HRQOL, measurable transplant-related disability utility (17). A performed United Kingdom involving 15-year identified adaptation functioning, HRQOL; neither formal nor were administered (18). The development availability well-validated, age-appropriate disease-specific would enhance exploration trends across all domains, facilitate novel surveillance, diagnostic interventional techniques toward overarching goal optimizing durable holistic outcomes (4). To date, published literature regarding limited. present aimed use describe experienced standardized scores both general individuals selected illnesses.