scholarly journals Discussing Personalized Prognosis Empowers Patients with Amyotrophic Lateral Sclerosis to Regain Control over Their Future: A Qualitative Study

2021 ◽  
Vol 11 (12) ◽  
pp. 1597
Author(s):  
Remko M. van Eenennaam ◽  
Loulou S. Koppenol ◽  
Willeke J. Kruithof ◽  
Esther T. Kruitwagen-van Reenen ◽  
Sotice Pieters ◽  
...  
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Focus Group ◽  
Information Needs ◽  
Information Provision ◽  
Emotional Impact ◽  
Survival Prediction ◽  
Personal Factors ◽  
The Future ◽  
Caregiver Coping ◽  
Lateral Sclerosis

The ENCALS survival prediction model offers patients with amyotrophic lateral sclerosis (ALS) the opportunity to receive a personalized prognosis of survival at the time of diagnosis. We explored experiences of patients with ALS, caregivers, and physicians with discussing personalized prognosis through interviews with patients and their caregivers, and in a focus group of physicians. Thematic analysis revealed four themes with seven subthemes; these were recognized by the focus group. First, tailored communication: physician’s communication style and information provision mediated emotional impact and increased satisfaction with communication. Second, personal factors: coping style, illness experiences, and information needs affected patient and caregiver coping with the prognosis. Third, emotional impact ranged from happy and reassuring to regret. Fourth, regaining control over the future: participants found it helpful in looking towards the future, and emphasized the importance of quality over quantity of life. Personalized prognosis can be discussed with minimal adverse emotional impact. How it is communicated—i.e., tailored to individual needs—is as important as what is communicated—i.e., a good or poor prognosis. Discussing personalized prognosis may help patients with ALS and their caregivers regain control over the future and facilitate planning of the future (care). For many patients, quality of life matters more than quantity of time remaining.

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

BMC Neurology ◽  
2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Remko M. van Eenennaam ◽  
Willeke J. Kruithof ◽  
Michael A. van Es ◽  
Esther T. Kruitwagen-van Reenen ◽  
Henk-Jan Westeneng ◽  
...  
Keyword(s):  
Systematic Review ◽  
Amyotrophic Lateral Sclerosis ◽  
Information Needs ◽  
Time Range ◽  
Advisory Panel ◽  
Survival Prediction ◽  
Decisional Capacity ◽  
Individual Needs ◽  
The Impact ◽  
Lateral Sclerosis

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 destroying hope. Tailoring communication to patient readiness and patient needs mediates the impact of prognostic disclosure. We developed a communication guide to support physicians in discussing personalized prognosis tailored to individual needs and preferences of people with ALS and their families. Methods A multidisciplinary working group of neurologists, rehabilitation physicians, and healthcare researchers A) identified relevant topics for guidance, B) conducted a systematic review on needs of patients regarding prognostic discussion in life-limiting disease, C) drafted recommendations based on evidence and expert opinion, and refined and finalized these recommendations in consensus rounds, based on feedback of an expert advisory panel (patients, family member, ethicist, and spiritual counsellor). Results A) Topics identified for guidance were 1) filling in the ENCALS survival model, and interpreting outcomes and uncertainty, and 2) tailoring discussion to individual needs and preferences of patients (information needs, role and needs of family, severe cognitive impairment or frontotemporal dementia, and non-western patients). B) 17 studies were included in the systematic review. C) Consensus procedures on drafted recommendations focused on selection of outcomes, uncertainty about estimated survival, culturally sensitive communication, and lack of decisional capacity. Recommendations for discussing the prognosis include the following: discuss prognosis based on the prognostic groups and their median survival, or, if more precise information is desired, on the interquartile range of the survival probability. Investigate needs and preferences of the patients and their families for prognostic disclosure, regardless of cultural background. If the patient does not want to know their prognosis, with patient permission discuss the prognosis with their family. If the patient is judged to lack decisional capacity, ask the family if they want to discuss the prognosis. Tailor prognostic disclosure step by step, discuss it in terms of time range, and emphasize uncertainty of individual survival time. Conclusion This communication guide supports physicians in tailoring discussion of personalized prognosis to the individual needs and preferences of people with ALS and their families.

scholarly journals Discussing Personalized Prognosis in Amyotrophic Lateral Sclerosis: Development of a Communication Guide

2020 ◽  
Author(s):  
Remko M. van Eenennaam ◽  
Willeke J. Kruithof ◽  
Michael A. van Es ◽  
Esther T. Kruitwagen-van Reenen ◽  
Henk-Jan Westeneng ◽  
...  
Keyword(s):  
Systematic Review ◽  
Amyotrophic Lateral Sclerosis ◽  
Information Needs ◽  
Time Range ◽  
Advisory Panel ◽  
Survival Prediction ◽  
Individual Needs ◽  
The Individual ◽  
The Impact ◽  
Lateral Sclerosis

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 destroying hope. Tailoring communication to patient readiness and patient needs mediates the impact of prognostic disclosure. We developed a communication guide to support physicians in discussing personalized prognosis tailored to individual needs and preferences of people with ALS and their families.Methods: A multidisciplinary working group of neurologists, rehabilitation physicians, and healthcare researchers A) identified relevant topics for guidance, B) conducted a systematic review on needs of patients regarding prognostic discussion in life-limiting disease, C) drafted recommendations based on evidence and expert opinion, and refined and finalized these recommendations in consensus rounds, based on feedback of an expert advisory panel (patients, family member, ethicist and spiritual counsellor).Results: A) Topics identified for guidance were 1) filling in the ENCALS survival model, and interpreting outcomes and uncertainty, and 2) tailoring discussion to individual needs and preferences of patients (information needs, role and needs of family, severe cognitive impairment or frontotemporal dementia, and non-western patients). B) 17 studies were included in the systematic review. C) Consensus procedures on drafted recommendations focused on selection of outcomes, uncertainty about estimated survival, culturally sensitive communication, and lack of decisional capacity.Recommendations for discussing the prognosis include the following: discuss prognosis based on the prognostic groups and their median survival, or, if more precise information is desired, on the interquartile range of the survival probability. Investigate needs and preferences of the patients and their families for prognostic disclosure, regardless of cultural background. If the patient does not want to know their prognosis, with patient permission discuss the prognosis with their family. If the patient is judged to lack decisional capacity, ask the family if they want to discuss the prognosis. Tailor prognostic disclosure step by step, discuss it in terms of time range, and emphasize uncertainty of individual survival time.Conclusion: This communication guide supports physicians in tailoring discussion of personalized prognosis to the individual needs and preferences of people with ALS and their families.

scholarly journals Discussing Personalized Prognosis in Amyotrophic Lateral Sclerosis: Development of a Communication Guide

2020 ◽  
Author(s):  
Remko M. van Eenennaam ◽  
Willeke J. Kruithof ◽  
Michael A. van Es ◽  
Esther T. Kruitwagen-van Reenen ◽  
Henk-Jan Westeneng ◽  
...  
Keyword(s):  
Systematic Review ◽  
Amyotrophic Lateral Sclerosis ◽  
Information Needs ◽  
Time Range ◽  
Advisory Panel ◽  
Survival Prediction ◽  
Decisional Capacity ◽  
Individual Needs ◽  
The Impact ◽  
Lateral Sclerosis

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 destroying hope. Tailoring communication to patient readiness and patient needs mediates the impact of prognostic disclosure. We developed a communication guide to support physicians in discussing personalized prognosis tailored to individual needs and preferences of people with ALS and their families.Methods: A multidisciplinary working group of neurologists, rehabilitation physicians, and healthcare researchers A) identified relevant topics for guidance, B) conducted a systematic review on needs of patients regarding prognostic discussion in life-limiting disease, C) drafted recommendations based on evidence and expert opinion, and refined and finalized these recommendations in consensus rounds, based on feedback of an expert advisory panel (patients, family member, ethicist and spiritual counsellor).Results: A) Topics identified for guidance were 1) filling in the ENCALS survival model, and interpreting outcomes and uncertainty, and 2) tailoring discussion to individual needs and preferences of patients (information needs, role and needs of family, severe cognitive impairment or frontotemporal dementia, and non-western patients). B) 17 studies were included in the systematic review. C) Consensus procedures on drafted recommendations focused on selection of outcomes, uncertainty about estimated survival, culturally sensitive communication, and lack of decisional capacity.Communication guide: We recommend discussing prognosis based on the prognostic groups and their median survival, or, if more precise information is desired, on the interquartile range of the survival probability. Regardless of cultural background, investigate needs and preferences of the patients and their families regarding prognostic disclosure. If the patient does not want to know their prognosis, with patient permission this can be discussed with their family. If the patient is judged to lack decisional capacity, ask the family if they want to discuss the prognosis. Tailor prognostic disclosure step by step, discuss it in terms of time range, and emphasize uncertainty of individual survival time.Conclusion: This communication guide supports physicians in tailoring discussion of personalized prognosis to the individual needs and preferences of people with ALS and their families.

scholarly journals The emotional impact of COVID-19 outbreak in amyotrophic lateral sclerosis patients: evaluation of depression, anxiety and interoceptive awareness

2020 ◽  
Vol 41 (9) ◽  
pp. 2339-2341 ◽  
Author(s):  
Natascia De Lucia ◽  
Francesco Pio Ausiello ◽  
Myriam Spisto ◽  
Fiore Manganelli ◽  
Elena Salvatore ◽  
...  
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Interoceptive Awareness ◽  
Emotional Impact ◽  
Lateral Sclerosis

scholarly journals Spinal cord multi-parametric magnetic resonance imaging for survival prediction in amyotrophic lateral sclerosis

2017 ◽  
Vol 24 (8) ◽  
pp. 1040-1046 ◽  
Author(s):  
G. Querin ◽  
M. M. El Mendili ◽  
T. Lenglet ◽  
S. Delphine ◽  
V. Marchand-Pauvert ◽  
...  
Keyword(s):  
Magnetic Resonance Imaging ◽  
Spinal Cord ◽  
Amyotrophic Lateral Sclerosis ◽  
Magnetic Resonance ◽  
Survival Prediction ◽  
Resonance Imaging ◽  
Lateral Sclerosis

Survival prediction in amyotrophic lateral sclerosis

1989 ◽  
Vol 12 (10) ◽  
pp. 833-841 ◽  
Author(s):  
Charles K. Jablecki ◽  
Charles Berry ◽  
Judy Leach
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Survival Prediction ◽  
Lateral Sclerosis

Combined form of Charcot disease and osteomalacia

1929 ◽  
Vol 25 (9) ◽  
pp. 966-968
Author(s):  
I. В. Grossman
Keyword(s):  
Spinal Cord ◽  
Amyotrophic Lateral Sclerosis ◽  
Soft Palate ◽  
Significant Part ◽  
Complete Coverage ◽  
Conductive Path ◽  
The Future ◽  
The Face ◽  
First Time ◽  
Lateral Sclerosis

Amyotrophic lateral sclerosis, described for the first time in 1869 - 1874 by Charcot and Joffrois and which received more accurate and complete coverage in the future thanks to the studies of Flсhsig, is known to be characterized by primary systemic degeneration along the cortical-muscular pathway, including here, in addition to the spinal cord department, and bulbar, related to the muscles of the face, tongue, soft palate, etc.; the entire conductive path is not always captured, but only a significant part of it

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