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

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.

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

BMC Neurology ◽

10.1186/s12883-020-02004-8 ◽

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.

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

10.21203/rs.3.rs-61584/v1 ◽

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.

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Communication of diagnosis in amyotrophic lateral sclerosis: stratification of patients for the estimation of the individual needs

Frontiers in Psychology ◽

10.3389/fpsyg.2015.00745 ◽

2015 ◽

Vol 6 ◽

Cited By ~ 1

Author(s):

Alessia Pizzimenti ◽

Maria Cristina Gori ◽

Emanuela Onesti ◽

Bev John ◽

Maurizio Inghilleri

Keyword(s):

Amyotrophic Lateral Sclerosis ◽

Individual Needs ◽

The Individual ◽

Lateral Sclerosis

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

Brain Sciences ◽

10.3390/brainsci11121597 ◽

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.

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The Impact of Rehabilitation Interventions on Quality of Life in Individuals with Amyotrophic Lateral Sclerosis: A Systematic Review

10.23937/ijnd-2017/1710001 ◽

2017 ◽

Vol 1 (1) ◽

Author(s):

Soofi Ammarah Y ◽

Kho Michelle E ◽

Bello-Haas Vanina Dal ◽

Letts Lori

Keyword(s):

Quality Of Life ◽

Systematic Review ◽

Amyotrophic Lateral Sclerosis ◽

The Impact ◽

Lateral Sclerosis

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Biomedical signals and machine learning in amyotrophic lateral sclerosis: a systematic review

BioMedical Engineering OnLine ◽

10.1186/s12938-021-00896-2 ◽

2021 ◽

Vol 20 (1) ◽

Author(s):

Felipe Fernandes ◽

Ingridy Barbalho ◽

Daniele Barros ◽

Ricardo Valentim ◽

César Teixeira ◽

...

Keyword(s):

Machine Learning ◽

Systematic Review ◽

Amyotrophic Lateral Sclerosis ◽

Literature Review ◽

Survival Prediction ◽

Biomedical Signals ◽

Evolution Of Technology ◽

Research Questions ◽

Lateral Sclerosis ◽

Potential Biomarkers

Abstract Introduction The use of machine learning (ML) techniques in healthcare encompasses an emerging concept that envisages vast contributions to the tackling of rare diseases. In this scenario, amyotrophic lateral sclerosis (ALS) involves complexities that are yet not demystified. In ALS, the biomedical signals present themselves as potential biomarkers that, when used in tandem with smart algorithms, can be useful to applications within the context of the disease. Methods This Systematic Literature Review (SLR) consists of searching for and investigating primary studies that use ML techniques and biomedical signals related to ALS. Following the definition and execution of the SLR protocol, 18 articles met the inclusion, exclusion, and quality assessment criteria, and answered the SLR research questions. Discussions Based on the results, we identified three classes of ML applications combined with biomedical signals in the context of ALS: diagnosis (72.22%), communication (22.22%), and survival prediction (5.56%). Conclusions Distinct algorithmic models and biomedical signals have been reported and present promising approaches, regardless of their classes. In summary, this SLR provides an overview of the primary studies analyzed as well as directions for the construction and evolution of technology-based research within the scope of ALS.

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