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Open Access 01-12-2023 | Amyotrophic Lateral Sclerosis | Research

Quality of life and depression in patients with amyotrophic lateral sclerosis – does the country of origin matter?

Authors: Katarzyna Ciećwierska, Dorothée Lulé, Maksymilian Bielecki, Olga Helczyk, Anna Maksymowicz-Śliwińska, Julia Finsel, Krzysztof Nieporęcki, Peter M. Andersen, Albert C. Ludolph, Magdalena Kuźma-Kozakiewicz

Published in: BMC Palliative Care | Issue 1/2023

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Abstract

Background

Given the inevitable relentless progressing nature of amyotrophic lateral sclerosis (ALS), it is essential to identify factors influencing patients’ wellbeing. The study aimed to prospectively assess factors influencing the quality of life (QoL) and depression in ALS patients compared to healthy controls (HCs) from Poland, Germany and Sweden and their relationship to socio-demographic and clinical factors.

Methods

314 ALS patients (120 from Poland, 140 from Germany, 54 from Sweden) and 311 age-, sex- and education-level-matched HCs underwent standardized interviews for quality of life, depression, functional status and pain.

Results

Patients from all three countries showed similar levels of functional impairment (ALSFRS-R). Overall, ALS patients assessed their quality of life as lower compared to HCs (p < 0.001 for the anamnestic comparative self-assessment (ACSA), p = 0.002 for the Schedule for the evaluation of the subjective quality of life - SEIQoL- direct weighting (SEIQoL-DW). Also, the German and Swedish patients, but not the Polish, reported higher depression levels than the corresponding HCs (p < 0.001). Analysis of ALS groups revealed that functional impairment was related to a lower quality of life (ACSA) and higher depression levels among German ALS patients. Longer time since diagnosis predicted lower depression and (in male subjects) higher quality of life.

Conclusions

ALS patients assess their quality of life and mood lower than healthy individuals within the studied countries. The relationships between clinical and demographic factors are moderated by country of provenance, which bears implications for the design and interpretation of scientific and clinical studies, which should reflect the complexity and heterogeneity of mechanisms determining QoL.
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Literature
1.
go back to reference Ahrendt D, Dubois H, Mezger E. (2015). An overview of quality of life in Europe. Global handbook of quality of life, 625–661. Ahrendt D, Dubois H, Mezger E. (2015). An overview of quality of life in Europe. Global handbook of quality of life, 625–661.
29.
go back to reference Mora JS, Genge A, Chio A, Estol CJ, Chaverri D, Hernández M, Marín S, Mascias J, Rodriguez GE, Povedano M, Paipa A, Dominguez R, Gamez J, Salvado M, Lunetta C, Ballario C, Riva N, Mandrioli J, Moussy A, Kinet JP, Auclair C, Dubreuil P, Arnold V, Mansfield CD, Hermine O. AB10015 STUDY GROUP, Masitinib as an add-on therapy to riluzole in patients with amyotrophic lateral sclerosis: a randomized clinical trial. Amyotroph Lateral Scler Frontotemporal Degener. 2020;21(1–2):5–14. https://doi.org/10.1080/21678421.2019.1632346.CrossRefPubMed Mora JS, Genge A, Chio A, Estol CJ, Chaverri D, Hernández M, Marín S, Mascias J, Rodriguez GE, Povedano M, Paipa A, Dominguez R, Gamez J, Salvado M, Lunetta C, Ballario C, Riva N, Mandrioli J, Moussy A, Kinet JP, Auclair C, Dubreuil P, Arnold V, Mansfield CD, Hermine O. AB10015 STUDY GROUP, Masitinib as an add-on therapy to riluzole in patients with amyotrophic lateral sclerosis: a randomized clinical trial. Amyotroph Lateral Scler Frontotemporal Degener. 2020;21(1–2):5–14. https://​doi.​org/​10.​1080/​21678421.​2019.​1632346.CrossRefPubMed
45.
go back to reference Wojciszke B. The negative social world: the polish culture of complaining. Int J Sociol. 2004;34(4):38–59.CrossRef Wojciszke B. The negative social world: the polish culture of complaining. Int J Sociol. 2004;34(4):38–59.CrossRef
47.
go back to reference WRITING GROUP ON BEHALF OF THE EDARAVONE (MCI-186) ALS 18 STUDY GROUP. Exploratory double-blind, parallel-group, placebo-controlled study of edaravone (MCI-186) in amyotrophic lateral sclerosis (Japan ALS severity classification: Grade 3, requiring assistance for eating, excretion or ambulation). Amyotroph Lateral Scler Frontotemporal Degener. 2017;18(sup1):40–8. https://doi.org/10.1080/21678421.2017.1361441.CrossRef WRITING GROUP ON BEHALF OF THE EDARAVONE (MCI-186) ALS 18 STUDY GROUP. Exploratory double-blind, parallel-group, placebo-controlled study of edaravone (MCI-186) in amyotrophic lateral sclerosis (Japan ALS severity classification: Grade 3, requiring assistance for eating, excretion or ambulation). Amyotroph Lateral Scler Frontotemporal Degener. 2017;18(sup1):40–8. https://​doi.​org/​10.​1080/​21678421.​2017.​1361441.CrossRef
Metadata
Title
Quality of life and depression in patients with amyotrophic lateral sclerosis – does the country of origin matter?
Authors
Katarzyna Ciećwierska
Dorothée Lulé
Maksymilian Bielecki
Olga Helczyk
Anna Maksymowicz-Śliwińska
Julia Finsel
Krzysztof Nieporęcki
Peter M. Andersen
Albert C. Ludolph
Magdalena Kuźma-Kozakiewicz
Publication date
01-12-2023
Publisher
BioMed Central
Published in
BMC Palliative Care / Issue 1/2023
Electronic ISSN: 1472-684X
DOI
https://doi.org/10.1186/s12904-023-01189-2

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