Health-related quality of life in clinical practice.
This month's question addressed something that many of us perhaps still have not formally incorporated into clinical practice, although we all are interested in our patients' health-related quality of life and want our inventions to result in improvements within this area. This view is exemplified by the response from Australia, which is one of several similar, unpublished, replies from the International Panel on this month's question (others came from Germany and Sweden). As mentioned in the introduction, health-related quality of life is becoming increasingly important as an outcome measure in clinical trials of new therapeutic interventions and several new measures have been and are developed. It is interesting and encouraging to hear about the new developments within this area that are being made by neuroscience nurses in different countries and within different subspecialties around the globe. As reported from the International Panel in here, new HRQL measures are currently developed in Canada and the UK focusing on patients with brains injuries and Huntington's disease (HD), respectively. In contrast to most established measures, the Canadian study has primarily been aimed at the positive aspects of life and not merely absence of the negative ones. Steve Smith in the UK has recently started developing a scale for use in clinical management of patients with HD. As far as I have been able to determine, this is the first measure of this kind to be developed for HD. Anyone who would like to know more about Steve's work or take part thereof is encouraged to contact him at this address above. Despite the fact that there already are several HRQL measures available, there is still a need for new instruments reflecting new aspects of health and disease. In addition, tools need to be designed for challenging conditions not readily addressed by existing measures. The replies from Canada and the UK represent these needs. It will be very interesting to eventually take part of the results from these colleagues' work. Finally, the terms HRQL and quality of life are often used interchangeable, indicating that focus also is needed on definition and conceptual construct within this field. There is still a great deal of controversy about what quality of life is and, as a result, how it is best measured and by whom.
D001315:Australia; D002170:Canada; D006801:Humans; D009488:Neurosciences; D009730:Nursing Assessment / Q000379:methods; D017063:Outcome Assessment, Health Care / Q000458:organization & administration*; D019984:Quality Indicators, Health Care / Q000458:organization & administration*; D011788:Quality of Life; D018434:Sickness Impact Profile; D013041:Specialties, Nursing / Q000592:standards*; D006113:United Kingdom