Discussing personalized prognosis in amyotrophic lateral sclerosis: development of a communication guide

Autor: Remko M. van Eenennaam, Willeke J. Kruithof, Michael A. van Es, Esther T. Kruitwagen-van Reenen, Henk-Jan Westeneng, Johanna M. A. Visser-Meily, Leonard H. van den Berg, Anita Beelen

Publikováno v: BMC Neurology, Vol 20, Iss 1, Pp 1-11 (2020)

Abstract Background Personalized ENCALS survival prediction model reliably estimates the personalized prognosis of patients with amyotrophic lateral sclerosis. Concerns were raised on discussing personalized prognosis without causing anxiety and dest

Externí odkaz: https://doaj.org/article/1b1bbf4f401640a3b5fe6ac91f67b75c

Control in the absence of choice: A qualitative study on decision-making about gastrostomy in people with amyotrophic lateral sclerosis, caregivers, and healthcare professionals.

Autor: Remko M van Eenennaam, Neele Rave, Willeke J Kruithof, Esther T Kruitwagen-van Reenen, Leonard H van den Berg, Johanna A Visser-Meily, Anita Beelen

Publikováno v: PLoS ONE, Vol 18, Iss 9, p e0290508 (2023)

BackgroundGastrostomy is recommended in amyotrophic lateral sclerosis for long-term nutritional support, however, people with amyotrophic lateral sclerosis and healthcare professionals perceive decision-making as complex.MethodTo explore their perspe

Externí odkaz: https://doaj.org/article/0cdc2861370d4aa2bd6a920fc58dfe41

Differences in Societal Participation Across Diagnostic Groups: Secondary Analyses of 8 Studies Using the Utrecht Scale for Evaluation of Rehabilitation-Participation

Autor: Nienke ter Hoeve, Tanja I. Mol, Marcel W M Post, Coen A M van Bennekom, Vera P. M. Schepers, Esther T. Kruitwagen-van Reenen, Johanna M A Visser-Meily

Publikováno v: Archives of Physical Medicine and Rehabilitation, 102(9), 1735-1745. W.B. Saunders
Archives of Physical Medicine and Rehabilitation, 102(9), 1735-1745. W B SAUNDERS CO-ELSEVIER INC
Archives of physical medicine and rehabilitation, 102(9), 1735-1745. W.B. Saunders Ltd

OBJECTIVE: To determine differences in participation problems between diagnostic groups and to examine diagnosis as a determinant of participation with and without statistically accounting for confounders.DESIGN: Secondary analyses of data from 8 stu

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::5a9afe097c8b0e46b9c2b10cbe589bc4
https://doi.org/10.1016/j.apmr.2021.02.024

Current practices and barriers in gastrostomy indication in amyotrophic lateral sclerosis: a survey of ALS care teams in The Netherlands

Autor: Esther T. Kruitwagen-van Reenen, Anita Beelen, Leonard H. van den Berg, Remko M. van Eenennaam, Johanna M A Visser-Meily, Willeke J. Kruithof

Publikováno v: Amyotrophic lateral sclerosisfrontotemporal degeneration. 23(3-4)

OBJECTIVE To describe current practices and barriers and support needs in gastrostomy indication and decision-making amongst rehabilitation physicians of ALS care teams in the Netherlands. Methods: Cross-sectional online survey of rehabilitation phys

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::8d463c8e140e3056e68067c107821caa
https://pubmed.ncbi.nlm.nih.gov/34486902

Aerobic Exercise Therapy in Ambulatory Patients With ALS

Autor: Johanna M A Visser-Meily, Leonard H. van den Berg, Marga Tepper, Ruben P A van Eijk, Reinout O van Vliet, Esther T. Kruitwagen-van Reenen, Annerieke C. van Groenestijn, Carin D. Schröder, Jan H. Veldink, Jan T. Groothuis, Hepke F Grupstra

Publikováno v: Neurorehabilitation and Neural Repair, 33(2), 153. SAGE Publications Inc.
Neurorehabilitation and neural repair, 33(2), 153-164. SAGE Publications Inc.
Neurorehabilitation and Neural Repair, 33, 2, pp. 153-164
Neurorehabilitation and Neural Repair, 33, 153-164

Background: Weakness caused by motor neuron degeneration in amyotrophic lateral sclerosis (ALS) may result in avoidance of physical activity, resulting in deconditioning and reduced health-related quality of life (HRQoL). Objective: To study the effe

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::5f57dd0b48735467e1898dea6b43e608
https://doi.org/10.1177/1545968319826051