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  1. Article ; Online: Development of a Rasch-Built Amyotrophic Lateral Sclerosis Impairment Multidomain Scale to Measure Disease Progression in ALS.

    de Jongh, Adriaan D / van Eijk, Ruben P A / Bakker, Leonhard A / Bunte, Tommy M / Beelen, Anita / van der Meijden, Conny / van Es, Michael A / Visser-Meily, Johanna M A / Kruitwagen, Esther T / Veldink, Jan H / van den Berg, Leonard H

    Neurology

    2023  Volume 101, Issue 6, Page(s) e602–e612

    Abstract: Background and objectives: Current scales used in amyotrophic lateral sclerosis (ALS) attempt to summarize different functional domains or "dimensions" into 1 overall score, which may not accurately characterize the individual patient's disease severity ...

    Abstract Background and objectives: Current scales used in amyotrophic lateral sclerosis (ALS) attempt to summarize different functional domains or "dimensions" into 1 overall score, which may not accurately characterize the individual patient's disease severity or prognosis. The use of composite score risks declaring treatments ineffective if not all dimensions of ALS disease progression are affected equally. We aimed to develop the ALS Impairment Multidomain Scale (AIMS) to comprehensively characterize disease progression and increase the likelihood of identifying effective treatments.
    Methods: The Revised ALS Functional Rating Scale (ALSFRS-R) and a preliminary questionnaire, based on literature review and patient input, were completed online by patients from the Netherlands ALS registry at bimonthly intervals over a period of 12 months. A 2-week test-retest, factor analysis, Rasch analysis, and a signal-to-noise optimization strategy were performed to create a multidomain scale. Reliability, longitudinal decline, and associations with survival were evaluated. The sample size required to detect a 35% reduction in progression rate over 6 or 12 months was assessed for a clinical trial that defines the ALSFRS-R or AIMS subscales as a primary endpoint family.
    Results: The preliminary questionnaire, consisting of 110 questions, was completed by 367 patients. Three unidimensional subscales were identified, and a multidomain scale was constructed with 7 bulbar, 11 motor, and 5 respiratory questions. Subscales fulfilled Rasch model requirements, with excellent test-retest reliability of 0.91-0.94 and a strong relationship with survival (
    Discussion: We developed the AIMS, consisting of unidimensional bulbar, motor, and respiratory subscales, which may characterize disease severity better than a total score. AIMS subscales have high test-retest reliability, are optimized to measure disease progression, and are strongly related to survival time. The AIMS can be easily administered and may increase the likelihood of identifying effective treatments in ALS clinical trials.
    MeSH term(s) Humans ; Amyotrophic Lateral Sclerosis ; Reproducibility of Results ; Prognosis ; Probability ; Disease Progression
    Language English
    Publishing date 2023-06-13
    Publishing country United States
    Document type Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 207147-2
    ISSN 1526-632X ; 0028-3878
    ISSN (online) 1526-632X
    ISSN 0028-3878
    DOI 10.1212/WNL.0000000000207483
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    In stock of ZB MED Cologne/Königswinter

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  2. Article ; Online: The current use of telehealth in ALS care and the barriers to and facilitators of implementation: a systematic review.

    Helleman, Jochem / Kruitwagen, Esther T / van den Berg, Leonard H / Visser-Meily, Johanna M A / Beelen, Anita

    Amyotrophic lateral sclerosis & frontotemporal degeneration

    2019  Volume 21, Issue 3-4, Page(s) 167–182

    Abstract: ... ...

    Abstract Objective
    MeSH term(s) Amyotrophic Lateral Sclerosis/psychology ; Amyotrophic Lateral Sclerosis/therapy ; Caregivers/psychology ; Caregivers/trends ; Health Personnel/psychology ; Health Personnel/trends ; Humans ; Patient Acceptance of Health Care/psychology ; Respiratory Insufficiency/psychology ; Respiratory Insufficiency/therapy ; Telemedicine/methods ; Telemedicine/trends ; Videoconferencing/trends
    Language English
    Publishing date 2019-12-26
    Publishing country England
    Document type Journal Article ; Research Support, Non-U.S. Gov't ; Systematic Review
    ZDB-ID 2705049-X
    ISSN 2167-9223 ; 2167-8421
    ISSN (online) 2167-9223
    ISSN 2167-8421
    DOI 10.1080/21678421.2019.1706581
    Database MEDical Literature Analysis and Retrieval System OnLINE

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    In stock of ZB MED Cologne/Königswinter

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    bis Jg. 1994: Bestellungen von Artikeln über das Online-Bestellformular
    Jg. 1995 - 2021: Lesesall (2.OG)
    ab Jg. 2022: Lesesaal (EG)

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  3. Article ; Online: Telehealth as part of specialized ALS care: feasibility and user experiences with "ALS home-monitoring and coaching".

    Helleman, Jochem / Van Eenennaam, Remko / Kruitwagen, Esther T / Kruithof, Willeke J / Slappendel, Marja J / Van Den Berg, Leonard H / Visser-Meily, Johanna M A / Beelen, Anita

    Amyotrophic lateral sclerosis & frontotemporal degeneration

    2020  Volume 21, Issue 3-4, Page(s) 183–192

    Abstract: Objective: ...

    Abstract Objective:
    MeSH term(s) Aged ; Amyotrophic Lateral Sclerosis/psychology ; Amyotrophic Lateral Sclerosis/therapy ; Cohort Studies ; Feasibility Studies ; Female ; Follow-Up Studies ; Humans ; Male ; Mentoring/methods ; Middle Aged ; Monitoring, Physiologic/methods ; Monitoring, Physiologic/psychology ; Nurse Practitioners/psychology ; Patient Satisfaction ; Prospective Studies ; Telemedicine/methods
    Language English
    Publishing date 2020-01-31
    Publishing country England
    Document type Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 2705049-X
    ISSN 2167-9223 ; 2167-8421
    ISSN (online) 2167-9223
    ISSN 2167-8421
    DOI 10.1080/21678421.2020.1718712
    Database MEDical Literature Analysis and Retrieval System OnLINE

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    In stock of ZB MED Cologne/Königswinter

    Zs.A 5874: Show issues Location:
    Je nach Verfügbarkeit (siehe Angabe bei Bestand)
    bis Jg. 1994: Bestellungen von Artikeln über das Online-Bestellformular
    Jg. 1995 - 2021: Lesesall (2.OG)
    ab Jg. 2022: Lesesaal (EG)

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  4. Article ; Online: A Road Map for Remote Digital Health Technology for Motor Neuron Disease.

    van Eijk, Ruben P A / Beelen, Anita / Kruitwagen, Esther T / Murray, Deirdre / Radakovic, Ratko / Hobson, Esther / Knox, Liam / Helleman, Jochem / Burke, Tom / Rubio Pérez, Miguel Ángel / Reviers, Evy / Genge, Angela / Steyn, Frederik J / Ngo, Shyuan / Eaglesham, John / Roes, Kit C B / van den Berg, Leonard H / Hardiman, Orla / McDermott, Christopher J

    Journal of medical Internet research

    2021  Volume 23, Issue 9, Page(s) e28766

    Abstract: Despite recent and potent technological advances, the real-world implementation of remote digital health technology in the care and monitoring of patients with motor neuron disease has not yet been realized. Digital health technology may increase the ... ...

    Abstract Despite recent and potent technological advances, the real-world implementation of remote digital health technology in the care and monitoring of patients with motor neuron disease has not yet been realized. Digital health technology may increase the accessibility to and personalization of care, whereas remote biosensors could optimize the collection of vital clinical parameters, irrespective of patients' ability to visit the clinic. To facilitate the wide-scale adoption of digital health care technology and to align current initiatives, we outline a road map that will identify clinically relevant digital parameters; mediate the development of benefit-to-burden criteria for innovative technology; and direct the validation, harmonization, and adoption of digital health care technology in real-world settings. We define two key end products of the road map: (1) a set of reliable digital parameters to capture data collected under free-living conditions that reflect patient-centric measures and facilitate clinical decision making and (2) an integrated, open-source system that provides personalized feedback to patients, health care providers, clinical researchers, and caregivers and is linked to a flexible and adaptable platform that integrates patient data in real time. Given the ever-changing care needs of patients and the relentless progression rate of motor neuron disease, the adoption of digital health care technology will significantly benefit the delivery of care and accelerate the development of effective treatments.
    MeSH term(s) Biomedical Technology ; Caregivers ; Health Personnel ; Humans ; Motor Neuron Disease/diagnosis ; Motor Neuron Disease/therapy ; Technology
    Language English
    Publishing date 2021-09-22
    Publishing country Canada
    Document type Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 2028830-X
    ISSN 1438-8871 ; 1439-4456
    ISSN (online) 1438-8871
    ISSN 1439-4456
    DOI 10.2196/28766
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  5. Article ; Online: Effects of aerobic exercise therapy and cognitive behavioural therapy on functioning and quality of life in amyotrophic lateral sclerosis

    van de Weerd Margreet GH / van der Linde Harmen / van Vliet Reinout O / Kruitwagen Esther T / Grupstra Hepke F / Post Marcel WM / Schröder Carin D / van de Port Ingrid GL / van Groenestijn Annerieke C / van den Berg Leonard H / Lindeman Eline

    BMC Neurology, Vol 11, Iss 1, p

    protocol of the FACTS-2-ALS trial

    2011  Volume 70

    Abstract: Abstract Background Amyotrophic lateral sclerosis (ALS) is a fatal progressive neurodegenerative disorder affecting motor neurons in the spinal cord, brainstem and motor cortex, leading to muscle weakness. Muscle weakness may result in the avoidance of ... ...

    Abstract Abstract Background Amyotrophic lateral sclerosis (ALS) is a fatal progressive neurodegenerative disorder affecting motor neurons in the spinal cord, brainstem and motor cortex, leading to muscle weakness. Muscle weakness may result in the avoidance of physical activity, which exacerbates disuse weakness and cardiovascular deconditioning. The impact of the grave prognosis may result in depressive symptoms and hopelessness. Since there is no cure for ALS, optimal treatment is based on symptom management and preservation of quality of life (QoL), provided in a multidisciplinary setting. Two distinctly different therapeutic interventions may be effective to improve or preserve daily functioning and QoL at the highest achievable level: aerobic exercise therapy (AET) to maintain or enhance functional capacity and cognitive behavioural therapy (CBT) to improve coping style and cognitions in patients with ALS. However, evidence to support either approach is still insufficient, and the underlying mechanisms of the approaches remain poorly understood. The primary aim of the FACTS-2-ALS trial is to study the effects of AET and CBT, in addition to usual care, compared to usual care alone, on functioning and QoL in patients with ALS. Methods / Design A multicentre, single-blinded, randomized controlled trial with a postponed information model will be conducted. A sample of 120 patients with ALS (1 month post diagnosis) will be recruited from 3 university hospitals and 1 rehabilitation centre. Patients will be randomized to one of three groups i.e. (1) AET + usual care, (2) CBT + usual care, (3) Usual care. AET consists of a 16-week aerobic exercise programme, on 3 days a week. CBT consists of individual psychological support of patients in 5 to 10 sessions over a 16-week period. QoL, functioning and secondary outcome measures will be assessed at baseline, immediately post intervention and at 3- and 6-months follow-up. Discussion The FACTS-2-ALS study is the first theory-based randomized controlled trial to evaluate the effects, and the maintenance of effects, of AET and CBT on functioning and QoL in patients with ALS. The results of this study are expected to generate new evidence for the effect of multidisciplinary care of persons with ALS. Trial registration Dutch Trial Register NTR1616 .
    Keywords Neurology. Diseases of the nervous system ; RC346-429 ; Neurosciences. Biological psychiatry. Neuropsychiatry ; RC321-571 ; Internal medicine ; RC31-1245 ; Medicine ; R ; DOAJ:Neurology ; DOAJ:Medicine (General) ; DOAJ:Health Sciences
    Subject code 360
    Language English
    Publishing date 2011-06-01T00:00:00Z
    Publisher BioMed Central
    Document type Article ; Online
    Database BASE - Bielefeld Academic Search Engine (life sciences selection)

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  6. Article ; Online: Effects of aerobic exercise therapy and cognitive behavioural therapy on functioning and quality of life in amyotrophic lateral sclerosis: protocol of the FACTS-2-ALS trial.

    van Groenestijn, Annerieke C / van de Port, Ingrid G L / Schröder, Carin D / Post, Marcel W M / Grupstra, Hepke F / Kruitwagen, Esther T / van der Linde, Harmen / van Vliet, Reinout O / van de Weerd, Margreet G H / van den Berg, Leonard H / Lindeman, Eline

    BMC neurology

    2011  Volume 11, Page(s) 70

    Abstract: Background: Amyotrophic lateral sclerosis (ALS) is a fatal progressive neurodegenerative disorder affecting motor neurons in the spinal cord, brainstem and motor cortex, leading to muscle weakness. Muscle weakness may result in the avoidance of physical ...

    Abstract Background: Amyotrophic lateral sclerosis (ALS) is a fatal progressive neurodegenerative disorder affecting motor neurons in the spinal cord, brainstem and motor cortex, leading to muscle weakness. Muscle weakness may result in the avoidance of physical activity, which exacerbates disuse weakness and cardiovascular deconditioning. The impact of the grave prognosis may result in depressive symptoms and hopelessness. Since there is no cure for ALS, optimal treatment is based on symptom management and preservation of quality of life (QoL), provided in a multidisciplinary setting. Two distinctly different therapeutic interventions may be effective to improve or preserve daily functioning and QoL at the highest achievable level: aerobic exercise therapy (AET) to maintain or enhance functional capacity and cognitive behavioural therapy (CBT) to improve coping style and cognitions in patients with ALS. However, evidence to support either approach is still insufficient, and the underlying mechanisms of the approaches remain poorly understood. The primary aim of the FACTS-2-ALS trial is to study the effects of AET and CBT, in addition to usual care, compared to usual care alone, on functioning and QoL in patients with ALS.
    Methods/design: A multicentre, single-blinded, randomized controlled trial with a postponed information model will be conducted. A sample of 120 patients with ALS (1 month post diagnosis) will be recruited from 3 university hospitals and 1 rehabilitation centre. Patients will be randomized to one of three groups i.e. (1) AET + usual care, (2) CBT + usual care, (3) Usual care. AET consists of a 16-week aerobic exercise programme, on 3 days a week. CBT consists of individual psychological support of patients in 5 to 10 sessions over a 16-week period. QoL, functioning and secondary outcome measures will be assessed at baseline, immediately post intervention and at 3- and 6-months follow-up.
    Discussion: The FACTS-2-ALS study is the first theory-based randomized controlled trial to evaluate the effects, and the maintenance of effects, of AET and CBT on functioning and QoL in patients with ALS. The results of this study are expected to generate new evidence for the effect of multidisciplinary care of persons with ALS.
    Trial registration: Dutch Trial Register NTR1616.
    MeSH term(s) Adolescent ; Adult ; Aged ; Amyotrophic Lateral Sclerosis/psychology ; Amyotrophic Lateral Sclerosis/rehabilitation ; Cognitive Behavioral Therapy/methods ; Exercise/physiology ; Exercise Therapy/methods ; Female ; Follow-Up Studies ; Humans ; Male ; Middle Aged ; Patient Compliance ; Single-Blind Method ; Time Factors ; Treatment Outcome ; Young Adult
    Language English
    Publishing date 2011-06-14
    Publishing country England
    Document type Journal Article ; Multicenter Study ; Randomized Controlled Trial ; Research Support, Non-U.S. Gov't
    ZDB-ID 2041347-6
    ISSN 1471-2377 ; 1471-2377
    ISSN (online) 1471-2377
    ISSN 1471-2377
    DOI 10.1186/1471-2377-11-70
    Database MEDical Literature Analysis and Retrieval System OnLINE

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