A Multi-Center Cohort Study on Characteristics of Pain, Its Impact and Pharmacotherapeutic Management in Patients with ALS

Background: Although pain is common in amyotrophic lateral sclerosis (ALS) and an effectively treatable symptom, it is widely under-recognized and undertreated. This study investigates epidemiological and clinical characteristics of pain, its impact and pharmacological treatment in ALS patients. In...

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Main Authors: Susanne Vogt, Ina Schlichte, Stefanie Schreiber, Bernadette Wigand, Grazyna Debska-Vielhaber, Johanna Heitmann, Thomas Meyer, Reinhard Dengler, Susanne Petri, Aiden Haghikia, Stefan Vielhaber
Format: Article
Language:English
Published: MDPI AG 2021-09-01
Series:Journal of Clinical Medicine
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Online Access:https://www.mdpi.com/2077-0383/10/19/4552
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author Susanne Vogt
Ina Schlichte
Stefanie Schreiber
Bernadette Wigand
Grazyna Debska-Vielhaber
Johanna Heitmann
Thomas Meyer
Reinhard Dengler
Susanne Petri
Aiden Haghikia
Stefan Vielhaber
author_facet Susanne Vogt
Ina Schlichte
Stefanie Schreiber
Bernadette Wigand
Grazyna Debska-Vielhaber
Johanna Heitmann
Thomas Meyer
Reinhard Dengler
Susanne Petri
Aiden Haghikia
Stefan Vielhaber
author_sort Susanne Vogt
collection DOAJ
description Background: Although pain is common in amyotrophic lateral sclerosis (ALS) and an effectively treatable symptom, it is widely under-recognized and undertreated. This study investigates epidemiological and clinical characteristics of pain, its impact and pharmacological treatment in ALS patients. In addition, opportunities for further optimization of pain therapy need to be identified. Methods: Patients from three German ALS outpatient clinics were asked to complete the Brief Pain Inventory and the ALS Functional Rating Scale—Extension and to participate in semi-structured telephone interviews. Results: Of the 150 study participants, 84 patients reported pain. Pain occurred across all disease stages, predominantly in the neck, back and lower extremities. It was described with a broad spectrum of pain descriptors and mostly interfered with activity-related functions. Of the 84 pain patients, 53.8% reported an average pain intensity ≥4 on the numerical rating scale (NRS), indicating pain of at least moderate intensity, and 64.3% used pain medication. Irrespective of the medication type, 20.4% of them had no sufficient pain relief. Thirteen out of 30 patients without pain medication reported an average NRS value ≥4. Eleven of them—mainly in the context of high pain interference with daily functions—were supposed to benefit from adequate pain therapy. However, many patients had relevant concerns and misconceptions about pain therapy. Conclusion: Given the frequency, extent and multi-faceted impact of pain, it is necessary to systematically assess pain throughout the disease course. Potentials to optimize pain therapy were seen in the subset of patients with insufficient pain relief despite medication and in those patients without pain medication but high pain interference. However, there is a need to respond to patients’ barriers to pain therapy.
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spelling doaj.art-3b3aeb1435e44724942ab8b962f0a28f2023-11-22T16:21:12ZengMDPI AGJournal of Clinical Medicine2077-03832021-09-011019455210.3390/jcm10194552A Multi-Center Cohort Study on Characteristics of Pain, Its Impact and Pharmacotherapeutic Management in Patients with ALSSusanne Vogt0Ina Schlichte1Stefanie Schreiber2Bernadette Wigand3Grazyna Debska-Vielhaber4Johanna Heitmann5Thomas Meyer6Reinhard Dengler7Susanne Petri8Aiden Haghikia9Stefan Vielhaber10Department of Neurology, Otto-von-Guericke University, 39120 Magdeburg, GermanyDepartment of Neurology, Otto-von-Guericke University, 39120 Magdeburg, GermanyDepartment of Neurology, Otto-von-Guericke University, 39120 Magdeburg, GermanyDepartment of Neurology, Otto-von-Guericke University, 39120 Magdeburg, GermanyDepartment of Neurology, Otto-von-Guericke University, 39120 Magdeburg, GermanyDepartment of Neurology, Otto-von-Guericke University, 39120 Magdeburg, GermanyDepartment of Neurology, Center for ALS and other Motor Neuron Disorders, Charité Universitätsmedizin, 13353 Berlin, GermanyDepartment of Neurology, Hannover Medical School, 30625 Hannover, GermanyDepartment of Neurology, Hannover Medical School, 30625 Hannover, GermanyDepartment of Neurology, Otto-von-Guericke University, 39120 Magdeburg, GermanyDepartment of Neurology, Otto-von-Guericke University, 39120 Magdeburg, GermanyBackground: Although pain is common in amyotrophic lateral sclerosis (ALS) and an effectively treatable symptom, it is widely under-recognized and undertreated. This study investigates epidemiological and clinical characteristics of pain, its impact and pharmacological treatment in ALS patients. In addition, opportunities for further optimization of pain therapy need to be identified. Methods: Patients from three German ALS outpatient clinics were asked to complete the Brief Pain Inventory and the ALS Functional Rating Scale—Extension and to participate in semi-structured telephone interviews. Results: Of the 150 study participants, 84 patients reported pain. Pain occurred across all disease stages, predominantly in the neck, back and lower extremities. It was described with a broad spectrum of pain descriptors and mostly interfered with activity-related functions. Of the 84 pain patients, 53.8% reported an average pain intensity ≥4 on the numerical rating scale (NRS), indicating pain of at least moderate intensity, and 64.3% used pain medication. Irrespective of the medication type, 20.4% of them had no sufficient pain relief. Thirteen out of 30 patients without pain medication reported an average NRS value ≥4. Eleven of them—mainly in the context of high pain interference with daily functions—were supposed to benefit from adequate pain therapy. However, many patients had relevant concerns and misconceptions about pain therapy. Conclusion: Given the frequency, extent and multi-faceted impact of pain, it is necessary to systematically assess pain throughout the disease course. Potentials to optimize pain therapy were seen in the subset of patients with insufficient pain relief despite medication and in those patients without pain medication but high pain interference. However, there is a need to respond to patients’ barriers to pain therapy.https://www.mdpi.com/2077-0383/10/19/4552amyotrophic lateral sclerosismotor neuron diseasepainpharmacotherapydaily functions
spellingShingle Susanne Vogt
Ina Schlichte
Stefanie Schreiber
Bernadette Wigand
Grazyna Debska-Vielhaber
Johanna Heitmann
Thomas Meyer
Reinhard Dengler
Susanne Petri
Aiden Haghikia
Stefan Vielhaber
A Multi-Center Cohort Study on Characteristics of Pain, Its Impact and Pharmacotherapeutic Management in Patients with ALS
Journal of Clinical Medicine
amyotrophic lateral sclerosis
motor neuron disease
pain
pharmacotherapy
daily functions
title A Multi-Center Cohort Study on Characteristics of Pain, Its Impact and Pharmacotherapeutic Management in Patients with ALS
title_full A Multi-Center Cohort Study on Characteristics of Pain, Its Impact and Pharmacotherapeutic Management in Patients with ALS
title_fullStr A Multi-Center Cohort Study on Characteristics of Pain, Its Impact and Pharmacotherapeutic Management in Patients with ALS
title_full_unstemmed A Multi-Center Cohort Study on Characteristics of Pain, Its Impact and Pharmacotherapeutic Management in Patients with ALS
title_short A Multi-Center Cohort Study on Characteristics of Pain, Its Impact and Pharmacotherapeutic Management in Patients with ALS
title_sort multi center cohort study on characteristics of pain its impact and pharmacotherapeutic management in patients with als
topic amyotrophic lateral sclerosis
motor neuron disease
pain
pharmacotherapy
daily functions
url https://www.mdpi.com/2077-0383/10/19/4552
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