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. [ABSTRACT FROM AUTHOR]
Riva, Silvia, Bullinger, Monika, Amann, Edda, and von Mackensen, Sylvia
Subjects
*HEALTH, *DRUGS, *MEDICINE, *PHYSIOLOGY, *CHILDREN'S health
Abstract
Background: Patient-Reported Outcomes (PROs) are considered important outcomes because they reflect the patient's experience in clinical trials. PROs have been included in the field of haemophilia only recently. Purpose: Comparing the contents of PROs measures used in haemophilia, based on the ICF/ICF-CY as frame of reference. Methods: Haemophilia-specific PROs for adults and children were selected on the grounds of international accessibility. The content of the selected instruments were examined by linking the concepts within the items of these instruments to the ICF/ICF-CY. Results: Within the 5 selected instruments 365 concepts were identified, of which 283 concepts were linked to the ICF/ICF CY and mapped into 70 different categories. The most frequently used categories were "b152: Emotional functions" and "e1101: Drugs". Conclusions: The present paper provides an overview on current PROs in haemophilia and facilitates the selection of appropriate instruments for specific purposes in clinical and research settings. This work was made possible by the grant of the European Murinet Project (Multidisciplinary Research Network on Health and Disability in Europe). [ABSTRACT FROM AUTHOR]
*QUALITY of life, *DENTISTRY, *MEDICINE, *CLINICAL trials, *HEALTH outcome assessment
Abstract
In Dentistry, as in other branches of Medicine, it has been recognised that objective measures of disease provide little insight into the impact of oral disorders on daily living and quality of life. A significant body of development work has been undertaken to provide health status measures for use as outcome measures in dentistry. In descriptive population studies, poor oral health related quality of life is associated with tooth loss. There is a less extensive literature of longitudinal clinical trials, and measurement of change and interpretation of change scores continues to pose a challenge. This paper reviews the literature regarding the development and use of these oral health related QoL measures and includes an appraisal of future research needs in this area. [ABSTRACT FROM AUTHOR]