TY  - JOUR
A1  - Kübler, Andrea
A1  - Hautzinger, Martin
A1  - Ludolph, Albert
A1  - Dickhaus, Thorsten
A1  - Real, Ruben G. L.
T1  - Well-being in amyotrophic lateral sclerosis: a pilot experience sampling study
N2  - Objective: The aim of this longitudinal study was to identify predictors of instantaneous well-being in patients with amyotrophic lateral sclerosis (ALS). Based on flow theory well-being was expected to be highest when perceived demands and perceived control were in balance, and that thinking about the past would be a risk factor for rumination which would in turn reduce well-being.

Methods: Using the experience sampling method, data on current activities, associated aspects of perceived demands, control, and well-being were collected from 10 patients with ALS three times a day for two weeks.

Results: Results show that perceived control was uniformly and positively associated with well-being, but that demands were only positively associated with well-being when they were perceived as controllable. Mediation analysis confirmed thinking about the past, but not thinking about the future, to be a risk factor for rumination and reduced well-being.

Discussion: Findings extend our knowledge of factors contributing to well-being in ALS as not only perceived control but also perceived demands can contribute to well-being. They further show that a focus on present experiences might contribute to increased well-being.
KW  - amyotrophic lateral sclerosis
KW  - ALS
KW  - coping
KW  - well-being
KW  - experience sampling
KW  - ESM
KW  - reminiscence
KW  - rumination
Y1  - 2014
U6  - http://nbn-resolving.de/urn/resolver.pl?urn:nbn:de:bvb:20-opus-113057
ER  - 
TY  - JOUR
A1  - Lulé, Dorothée
A1  - Kübler, Andrea
A1  - Ludolph, Albert C.
T1  - Ethical principles in patient-centered medical care to support quality of life in amyotrophic lateral sclerosis
JF  - Frontiers in Neurology
N2  - It is one of the primary goals of medical care to secure good quality of life (QoL) while prolonging survival. This is a major challenge in severe medical conditions with a prognosis such as amyotrophic lateral sclerosis (ALS). Further, the definition of QoL and the question whether survival in this severe condition is compatible with a good QoL is a matter of subjective and culture-specific debate. Some people without neurodegenerative conditions believe that physical decline is incompatible with satisfactory QoL. Current data provide extensive evidence that psychosocial adaptation in ALS is possible, indicated by a satisfactory QoL. Thus, there is no fatalistic link of loss of QoL when physical health declines. There are intrinsic and extrinsic factors that have been shown to successfully facilitate and secure QoL in ALS which will be reviewed in the following article following the four ethical principles (1) Beneficence, (2) Non-maleficence, (3) Autonomy and (4) Justice, which are regarded as key elements of patient centered medical care according to Beauchamp and Childress. This is a JPND-funded work to summarize findings of the project NEEDSinALS (www.NEEDSinALS.com) which highlights subjective perspectives and preferences in medical decision making in ALS.
KW  - ethics
KW  - quality of life (QoL)
KW  - care
KW  - amyotrophic lateral sclerosis (ALS)
KW  - well-being
KW  - depression
KW  - coping
KW  - psychosocial adaptation
Y1  - 2019
U6  - http://nbn-resolving.de/urn/resolver.pl?urn:nbn:de:bvb:20-opus-196239
SN  - 1664-2295
VL  - 10
ER  -