We thank Bickhardt and Meyer for their correspondence. We concluded from our data that an individual perspective of patients’ individual situations is important and that a simple deductive conclusion from the extent to which quality of life and affective situation are compromised is impossible. We therefore welcome information about others’ experiences that were not captured in our statistically based discussion. Anyone dealing with ALS knows that such patients exist and that they deserve all the respect and care that Bickhardt and Meyer rightly demand. On the basis of international literature and results from our study group as well as other samples of ALS patients (1- 4) we conclude, however, that patients’ quality of life statistically barely deviates from that in the healthy population, even in late stages of the illness and under ventilation. The fact that contrasting examples are found in clinical practice is due to the nature of quantitative methods. Individual experience is not a scientific criterion. It is for this reason that Bickhardt and Meyer in their remarks have underlined our conclusions that individual patients have a right to depressive, autoaggressive, and euphoric phases; these should be treated according to medical and clinical-psychological parameters and not merely accepted as fate.
Another observation made by ourselves as well as others may serve to strengthen our case: the often observed phenomenon that the outer perspective differs significantly from the inner perspective. A patient with—even severe—disabilities assesses his or her quality of life as clearly better than a healthy observer does (4, 2).
As we mentioned and are aware, our study has limitations (patients’ dependence on highly specialized outpatient departments, patients’ willingness to participate in the study), and future studies will have to fill in the gaps (we are currently conducting such studies—which also takes into account the situation in the Netherlands, by comparison). The criticism of our case numbers is understandable; but using statistical methods is an attempt to overcome the disadvantages associated with small numbers, and our conclusions are based on just such methods.
We hope that we have prompted discussions the quality of life of ALS patients, but also of that of other population groups with severe disabilities.
Footnotes
Conflict of interest statement
The authors of all letters and of the reply declare that no conflict of interest exists according to the Guidelines of the International Committee of Medical Journal Editors.
Declaration
The study subjects gave written consent to participate in the study.
The studies were approved by the ethics committees at the universities of Ulm and Tübingen.
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