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Bath Erhebungsinstrument der Subjektiven Lebensqualität bei Demenz (BASQID) Benutzerhandbuch für die deutschsprachige Version 1.0: Anleitung für Nutzerinnen und Nutzer sowie Eigenschaften des Instruments
Abstract
Zusammenfassung
Das BASQID ist ein Instrument zur Erfassung von Lebensqualität. Es wurde für den Einsatz bei Menschen mit leichter bis mittelschwerer Demenz, entsprechend dem Mini-Mental-Status-Test (MMST) [1] mit einer Punktzahl von zwölf oder mehr, entwickelt und validiert. Das BASQID wird in Interviewform erhoben, wobei der oder die Interviewende dem Menschen mit Demenz jede Frage visuell und mündlich präsentiert.
Diese Datei umfasst das Benutzerhandbuch für die deutschsprachige BASQID Version 1.0 inklusive der Instruktionen für die Interviewenden und einer Zusammenfassung der Eigenschaften des BASQID. Dateien mit dem Auswertungsbogen und Vorlagen für die Fragen- und Antwortkarten sind ebenfalls erhältlich und befinden sich für die deutschsprachige Version im Anhang. Für die englischsprachige Originalversion sind die Dateien über den folgenden Link erhältlich: https://www.rice.org.uk/basqid
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The terms 'quality-of-life', 'wellbeing' and 'happiness' denote different meanings; sometimes they are used as an umbrella term for all of value, and the other times to denote special merits. This paper is about the specific meanings of the terms. It proposes a classification based on two bi-partitions; between life 'chances' and life 'results', and between 'outer' and 'inner' qualities. Together these dichotomies imply four qualities of life: 1) livability of the environment, 2) life-ability of the individual, 3) external utility of life and 4) inner appreciation of life. This fourfold matrix is applied in three ways: firstly to place related notions and alternative classifications, secondly to explore substantive meanings in various measures for quality of life and thirdly to find out whether quality-of-life can be measured comprehensively. This last question is answered in the negative. Current sum-scores make little sense. The most inclusive summary measure is still how long and happily people live.
To evaluate how well quality of life is being measured in the medical literature and to offer a new approach to the measurement.
Original English-language articles having the term "quality of life" in their titles were identified from a recent Quality-of-Life Bibliography and from two MEDLINE searches. Articles were eligible for review only if they described or used one or more "quality-of-life" instruments.
Twenty-five articles were randomly selected from each of the three data sources.
Each article was reviewed for its compliance with two sets of criteria having several components, which are cited under "Data Synthesis."
(1) Investigators conceptually defined quality of life in only 11 (15%) of the 75 articles; identified the targeted domains in only 35 (47%); gave reasons for selecting the chosen quality-of-life instruments in only 27 (36%); and aggregated their results into a composite quality-of-life score in only 27 (38%) of 71 eligible articles. (2) No article distinguished "overall" quality of life from health-related quality of life; patients were invited to give their own separate rating for quality of life in only 13 articles (17%); and among 71 eligible articles, patients were asked to supplement the stipulated items with personal responses in only nine (13%) and to rate the importance of individual items in only six (8.5%).
Because quality of life is a uniquely personal perception, denoting the way that individual patients feel about their health status and/or nonmedical aspects of their lives, most measurements of quality of life in the medical literature seem to aim at the wrong target. Quality of life can be suitably measured only by determining the opinions of patients and by supplementing (or replacing) the instruments developed by "experts."
This book brings together leading researchers in the field of aging to begin to define the concept of quality of life in the later years, to outline the issues of its measurement, and to evaluate existing interventions. It includes reviews of the literature; a report on a survey designed to assess and compare perceptions of quality of life among older adults, their families, and service providers; and discussions of current research and future research directions.
This book is based on the belief that to ensure a high quality of life in the later years it is necessary to address all aspects of the individual's internal life and his or her role in society. (PsycINFO Database Record (c) 2012 APA, all rights reserved)
This paper describes the World Health Organization's project to develop a quality of life instrument (the WHOQOL). It outlines the reasons that the project was undertaken, the thinking that underlies the project, the method that has been followed in its development and the current status of the project. The WHOQOL assesses individuals' perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns. It has been developed collaboratively in several culturally diverse centres over four years. Piloting of the WHOQOL on some 4500 respondents in 15 cultural settings has been completed. On the basis of this data the revised WHOQOL Field Trial Form has been finalized, and field testing is currently in progress. The WHOQOL produces a multi-dimensional profile of scores across six domains and 24 sub-domains of quality of life
This concluding essay discusses some crucial methodological issues raised by other papers in this issue. It also suggests directions for further conceptual development concerning the qualitative research on chronic illness.
Measurement of quality of life is becoming increasingly relevant to controlled clinical trials. Two basic types of instrument are available: generic instruments, which include health profiles and utility measurements based on the patient's preferences in regard to treatment and outcome; and specific instruments, which focus on problems associated with individual diseases, patient groups or areas of function. The two approaches are not mutually exclusive; each has its strengths and weaknesses and may be suitable under different circumstances. We surveyed 75 randomized trials published in three medical journals in 1986 and categorized them according to the importance of quality of life as a measure of outcome and the extent to which quality of life was actually measured. Although a number of the investigators used quality-of-life instruments in a sophisticated manner, in only 10 of 55 trials in which the measurement had been judged to be crucial or important were instruments with established validity and responsiveness used. We conclude that although accurate measurement of quality of life in randomized trials is now feasible it is still not widely done. Using the framework we have outlined, investigators can choose generic or specific instruments according to the purpose and the focus of their trial.
The patient perspective has been largely ignored in studies of Alzheimer's disease. The person with dementia is often relegated to the status of object rather than legitimate contributor to the research process and much can be gained from a systematic study of patients' views regarding their illness and care. We examine the status of dementia patients in three research areas and identify research challenges and opportunities that may substantially increase our understanding of dementia.