Information Needs and Preferences of Family Caregivers of Patients With Amyotrophic Lateral Sclerosis

2020 ◽  
Vol 52 (5) ◽  
pp. E9-E10
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Family Caregivers ◽  
Information Needs ◽  
Lateral Sclerosis

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 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.

Psychometric properties of the Korean version of the positive aspects of caregiving scale for family caregivers of people with amyotrophic lateral sclerosis

2020 ◽  
Vol 18 (6) ◽  
pp. 699-706
Author(s):  
Hyeon Sik Chu ◽  
Young Ran Tak
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Factor Analysis ◽  
Family Caregivers ◽  
Convergent Validity ◽  
Reliability And Validity ◽  
Secondary Data ◽  
Primary Study ◽  
Korean Version ◽  
Positive Aspects Of Caregiving ◽  
Lateral Sclerosis

AbstractObjectiveMany caregivers report finding positive meanings in their caregiving roles and activities. The positive aspects of caregiving (PAC) scale was designed to measure positive appraisals of caregiving. This study assessed the reliability and validity of the Korean version of the PAC for family caregivers of people with amyotrophic lateral sclerosis (ALS).MethodThe instrument's content and semantic equivalence were established using translation and back translation of the PAC. A convenience sample of 127 family caregivers of patients with ALS in Korea was recruited. Content, construct, and convergent validity of the Korean PAC were evaluated. Cronbach's α was used to assess reliability. This study used secondary data; the primary study received approval from the Institutional Review Board of H Hospital, from where data were collected. The consent forms did not mention the future use of data. Therefore, we have applied for approval regarding this study's protocol and exemption from informed consent.ResultsThe Cronbach's α was 0.92, and internal consistency was acceptable. Exploratory factor analysis supported the construct validity with a two-factor solution explaining 74.73% of the total variance. Regarding convergent validity, the Korean PAC score negatively correlated with caregiver burden and depression and positively with self-rated health status. We were unable to evaluate the suitability of the suggested structural dimensionality through confirmatory factor analysis. Furthermore, as we used secondary data, we could not assess retest reliability for the evaluation of the scale's stability.Significance of resultsThe Korean PAC was found to be an applicable instrument with satisfactory reliability and validity and suitable for further use as a measure for positive appraisals of caregiving for family caregivers of people with ALS. It may be effective for measuring caregivers’ psychological resources.

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