congenital hepatic fibrosis (chf) is a rare disease that affects both the liver and kidneys.  congenital hepatic fibrosis (chf) is an autosomal recessive inherited malformation defined pathologically by a variable degree of periportal fibrosis and irregularly shaped proliferating bile ducts. affected individuals also have impaired renal function, usually caused, in children and teenagers, by an...

— Recently there are so many media contents created and used by variety routes. Therefore, it is essential to make a new platform which is used for distributing media contents include IPTV. With open IPTV service, developing the new platform became even more important. Because open IPTV makes it possible for consumers to choose contents regardless of contents of the providers. The new platform ...

The EQ-5D-5L is a widely used generic instrument to measure health-related quality of life. This study evaluates health perception in a representative sample of the general German population from 2015. To compare results over time, a component analysis technique was used that separates changes in the description and valuation of health states. The whole sample and also subgroups, stratified by ...

BACKGROUND Epilepsy is the most common neurological problem that affects people with learning disabilities. The high seizure frequency, resistance to treatments, associated skills deficit and co-morbidities make the management of epilepsy particularly challenging for people with learning disabilities. The Books Beyond Words booklet for epilepsy uses images to help people with learning disabilit...

Background Health Related Quality of Life (HRQoL) is an indicator of patient's physical, psychological and social life. HRQoL is influenced by experience, beliefs, perceptions and expectations, and measures subjective perspective of the patient himself. EQ-5D-5L and SF-12 questionnaires are validated instruments useful to measure HRQoL, increasingly administered in electronic formats. Objecti...

BACKGROUND Interest in collecting Patient Reported Outcomes using electronic methods such as mobile phones has increased in recent years. However there is debate about the level of measurement equivalence between the traditional paper and newer electronic modes. Information about the acceptability of the electronic versions to respondents is also required. The aim of this study is to compare th...

INTRODUCTION Chronic diseases associated with aging, such as arthritis, frequently cause reduced mobility, pain and diminished quality of life. To date, research on the association between mobility and quality of life has primarily focused in the elderly; hence, much less is known about this association in the near elderly. This cross-sectional study aimed to assess the association between mobi...

PURPOSE The ICECAP-A and EQ-5D-5L are two index measures appropriate for use in health research. Assessment of content validity allows understanding of whether a measure captures the most relevant and important aspects of a concept. This paper reports a qualitative assessment of the content validity and appropriateness for use of the eq-5D-5L and ICECAP-A measures, using novel methodology. ME...