@article{MatuzBirbaumerHautzingeretal.,
  author    = {Matuz, Tamara and Birbaumer, Niels and Hautzinger, Martin and K{\"u}bler, Andrea},
  title     = {Psychosocial adjustment to ALS: a longitudinal study},
  series = {Frontiers in Psychology},
  volume    = {6},
  journal   = {Frontiers in Psychology},
  number    = {1197},
  issn      = {1664-1078},
  doi       = {10.3389/fpsyg.2015.01197},
  url       = {http://nbn-resolving.de/urn:nbn:de:bvb:20-opus-190208},
  abstract  = {For the current study the Lazarian stress-coping theory and the appendant model of psychosocial adjustment to chronic illness and disabilities (Pakenham, 1999) has shaped the foundation for identifying determinants of adjustment to ALS. We aimed to investigate the evolution of psychosocial adjustment to ALS and to determine its long-term predictors. A longitudinal study design with four measurement time points was therefore, used to assess patients' quality of life, depression, and stress-coping model related aspects, such as illness characteristics, social support, cognitive appraisals, and coping strategies during a period of 2 years. Regression analyses revealed that 55\% of the variance of severity of depressive symptoms and 47\% of the variance in quality of life at T2 was accounted for by all the T1 predictor variables taken together. On the level of individual contributions, protective buffering, and appraisal of own coping potential accounted for a significant percentage in the variance in severity of depressive symptoms, whereas problem management coping strategies explained variance in quality of life scores. Illness characteristics at T2 did not explain any variance of both adjustment outcomes. Overall, the pattern of the longitudinal results indicated stable depressive symptoms and quality of life indices reflecting a successful adjustment to the disease across four measurement time points during a period of about two years. Empirical evidence is provided for the predictive value of social support, cognitive appraisals, and coping strategies, but not illness parameters such as severity and duration for adaptation to ALS. The current study contributes to a better conceptualization of adjustment, allowing us to provide evidence-based support beyond medical and physical intervention for people with ALS.},
  language  = {en}
}
@article{ErlbeckMochtyKuebleretal.2017,
  author    = {Erlbeck, Helena and Mochty, Ursula and K{\"u}bler, Andrea and Real, Ruben G. L.},
  title     = {Circadian course of the P300 ERP in patients with amyotrophic lateral sclerosis - implications for brain-computer interfaces (BCI)},
  series = {BMC Neurology},
  volume    = {17},
  journal   = {BMC Neurology},
  number    = {3},
  doi       = {10.1186/s12883-016-0782-1},
  url       = {http://nbn-resolving.de/urn:nbn:de:bvb:20-opus-157423},
  year      = {2017},
  abstract  = {Background: Accidents or neurodegenerative diseases like amyotrophic lateral sclerosis (ALS) can lead to progressing, extensive, and complete paralysis leaving patients aware but unable to communicate (locked-in state). Brain-computer interfaces (BCI) based on electroencephalography represent an important approach to establish communication with these patients. The most common BCI for communication rely on the P300, a positive deflection arising in response to rare events. To foster broader application of BCIs for restoring lost function, also for end-users with impaired vision, we explored whether there were specific time windows during the day in which a P300 driven BCI should be preferably applied. Methods: The present study investigated the influence of time of the day and modality (visual vs. auditory) on P300 amplitude and latency. A sample of 14 patients (end-users) with ALS and 14 healthy age matched volunteers participated in the study and P300 event-related potentials (ERP) were recorded at four different times (10, 12 am, 2, \& 4 pm) during the day. Results: Results indicated no differences in P300 amplitudes or latencies between groups (ALS patients v. healthy participants) or time of measurement. In the auditory condition, latencies were shorter and amplitudes smaller as compared to the visual condition. Conclusion: Our findings suggest applicability of EEG/BCI sessions in patients with ALS throughout normal waking hours. Future studies using actual BCI systems are needed to generalize these findings with regard to BCI effectiveness/efficiency and other times of day.},
  language  = {en}
}
@article{KaethnerHalderHintermuelleretal.2017,
  author    = {K{\"a}thner, Ivo and Halder, Sebastian and Hinterm{\"u}ller, Christoph and Espinosa, Arnau and Guger, Christoph and Miralles, Felip and Vargiu, Eloisa and Dauwalder, Stefan and Rafael-Palou, Xavier and Sol{\`a}, Marc and Daly, Jean M. and Armstrong, Elaine and Martin, Suzanne and K{\"u}bler, Andrea},
  title     = {A Multifunctional Brain-Computer Interface Intended for Home Use: An Evaluation with Healthy Participants and Potential End Users with Dry and Gel-Based Electrodes},
  series = {Frontiers in Neuroscience},
  volume    = {11},
  journal   = {Frontiers in Neuroscience},
  number    = {286},
  doi       = {10.3389/fnins.2017.00286},
  url       = {http://nbn-resolving.de/urn:nbn:de:bvb:20-opus-157925},
  year      = {2017},
  abstract  = {Current brain-computer interface (BCIs) software is often tailored to the needs of scientists and technicians and therefore complex to allow for versatile use. To facilitate home use of BCIs a multifunctional P300 BCI with a graphical user interface intended for non-expert set-up and control was designed and implemented. The system includes applications for spelling, web access, entertainment, artistic expression and environmental control. In addition to new software, it also includes new hardware for the recording of electroencephalogram (EEG) signals. The EEG system consists of a small and wireless amplifier attached to a cap that can be equipped with gel-based or dry contact electrodes. The system was systematically evaluated with a healthy sample, and targeted end users of BCI technology, i.e., people with a varying degree of motor impairment tested the BCI in a series of individual case studies. Usability was assessed in terms of effectiveness, efficiency and satisfaction. Feedback of users was gathered with structured questionnaires. Two groups of healthy participants completed an experimental protocol with the gel-based and the dry contact electrodes (N = 10 each). The results demonstrated that all healthy participants gained control over the system and achieved satisfactory to high accuracies with both gel-based and dry electrodes (average error rates of 6 and 13\%). Average satisfaction ratings were high, but certain aspects of the system such as the wearing comfort of the dry electrodes and design of the cap, and speed (in both groups) were criticized by some participants. Six potential end users tested the system during supervised sessions. The achieved accuracies varied greatly from no control to high control with accuracies comparable to that of healthy volunteers. Satisfaction ratings of the two end-users that gained control of the system were lower as compared to healthy participants. The advantages and disadvantages of the BCI and its applications are discussed and suggestions are presented for improvements to pave the way for user friendly BCIs intended to be used as assistive technology by persons with severe paralysis.},
  language  = {en}
}
@article{LuleKueblerLudolph2019,
  author    = {Lul{\´e}, Doroth{\´e}e and K{\"u}bler, Andrea and Ludolph, Albert C.},
  title     = {Ethical principles in patient-centered medical care to support quality of life in amyotrophic lateral sclerosis},
  series = {Frontiers in Neurology},
  volume    = {10},
  journal   = {Frontiers in Neurology},
  issn      = {1664-2295},
  doi       = {10.3389/fneur.2019.00259},
  url       = {http://nbn-resolving.de/urn:nbn:de:bvb:20-opus-196239},
  year      = {2019},
  abstract  = {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.},
  language  = {en}
}
@article{FroehlichZahnerSchmalzingetal.2023,
  author    = {Froehlich, Matthias and Zahner, Antonia and Schmalzing, Marc and Gernert, Michael and Strunz, Patrick-Pascal and Hueper, Sebastian and Portegys, Jan and Schwaneck, Eva Christina and Gadeholt, Ottar and K{\"u}bler, Andrea and Hewig, Johannes and Ziebell, Philipp},
  title     = {Patient-reported outcomes provide evidence for increased depressive symptoms and increased mental impairment in giant cell arteritis},
  series = {Frontiers in Medicine},
  volume    = {10},
  journal   = {Frontiers in Medicine},
  doi       = {10.3389/fmed.2023.1146815},
  url       = {http://nbn-resolving.de/urn:nbn:de:bvb:20-opus-319761},
  year      = {2023},
  abstract  = {Objectives The spectrum of giant cell arteritis (GCA) and polymyalgia rheumatica (PMR) represents highly inflammatory rheumatic diseases. Patients mostly report severe physical impairment. Possible consequences for mental health have been scarcely studied. The aim of this study was to investigate psychological well-being in the context of GCA and PMR. Methods Cross-sectional study with N = 100 patients with GCA and/or PMR (GCA-PMR). Patient-reported outcomes (PROs) were measured using the Short Form 36 Version 2 (SF-36v2) and visual analog scale (VAS) assessment. Moreover, the Patient Health Questionnaire 9 (PHQ-9) was used in 35 of 100 patients to detect depression. To compare PROs with physician assessment, VAS was also rated from physician perspective. To assess a possible association with inflammation itself, serological parameters of inflammation (C-reactive protein [CRP], erythrocyte sedimentation rate [ESR]) were included. Results In all scales of the SF-36v2 except General Health (GH) and in the physical and mental sum score (PCS, MCS), a significant impairment compared to the German reference collective was evident (MCS: d = 0.533, p < 0.001). In the PHQ-9 categorization, 14 of the 35 (40\%) showed evidence of major depression disorder. VAS Patient correlated significantly with PHQ-9 and SF-36 in all categories, while VAS Physician showed only correlations to physical categories and not in the mental dimensions. Regarding inflammatory parameters, linear regression showed CRP to be a complementary significant positive predictor of mental health subscale score, independent of pain. Conclusion PRO show a relevant impairment of mental health up to symptoms of major depression disorder. The degree of depressive symptoms is also distinctly associated with the serological inflammatory marker CRP.},
  language  = {en}
}