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

Remko M Van Eenennaam,Johanna M A Visser-Meily,Esther T Kruitwagen-Van Reenen,Sotice Pieters,Willeke J Kruithof,Michael A Van Es,Loulou S Koppenol,Leonard H Van Den Berg,Anita Beelen

doi:10.3390/brainsci11121597

Abstract

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.

Highlights

Life expectancy in amyotrophic lateral sclerosis (ALS) varies greatly, ranging from months to over 10 years from disease onset [1]
The Personalized ENCALS survival prediction model for ALS allows physicians to estimate a more personalized prognosis—i.e., expected survival in individual patients from symptom onset to death, tracheostomy, or non-invasive ventilation for more than 23 h per day—at diagnosis [3]. This is especially relevant, since the prediction model shows that in about 60% of patients, average survival is either an overestimation or underestimation, which can have a negative impact on the emotional wellbeing of patients and their families [4]
We explored experiences of people with ALS, their caregivers, and their physicians when discussing the personalized prognosis based on the ENCALS prediction model [3]

Summary

Introduction

Life expectancy in amyotrophic lateral sclerosis (ALS) varies greatly, ranging from months to over 10 years from disease onset [1]. The Personalized ENCALS survival prediction model for ALS allows physicians to estimate a more personalized prognosis—i.e., expected survival in individual patients from symptom onset to death, tracheostomy, or non-invasive ventilation for more than 23 h per day—at diagnosis [3]. This is especially relevant, since the prediction model shows that in about 60% of patients, average survival is either an overestimation or underestimation, which can have a negative impact on the emotional wellbeing of patients and their families [4]. Studies in other life-limiting diseases, predominantly terminal cancer, show that prognosis can safely be discussed with patients and their caregivers as long as communication is tailored to their preferences and needs; this may even benefit patient decision-making and planning for the future, and provide a sense of control [13,14]

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Discussion

Conclusion