Characteristics of pain and the burden it causes in patients with amyotrophic lateral sclerosis – a longitudinal study

Wigand, Bernadette; Schlichte, Ina; Schreiber, Stefanie; Heitmann, Johanna; Meyer, Thomas D.; Dengler, Reinhard; Petri, Susanne; Haghikia, Aiden; Vielhaber, Stefan; Vogt, Susanne

doi:10.1080/21678421.2021.1962354

Cited by 8 publications

(9 citation statements)

References 32 publications

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“…A longitudinal study indicated that pain intensity increased by 1 point on the visual analog scale from the first visit to the last, with a median follow-up period of 104 days (range, 35–846 days) [ 57 ]. Similarly, a recent study including 151 patients at baseline also revealed that the intensity and quality of pain and the impairment it causes did not change significantly over time [ 54 ], which is consistent with findings from another longitudinal study [ 58 ].…”

Section: Characteristics Of Painsupporting

confidence: 84%

“…Again, this inconsistency might result from the different study designs and settings, the definition of pain, and the assessment tools for pain, as well as the cross-sectional nature of the aforementioned studies. A recent longitudinal study indicated that at least moderate average pain was reported in about two-thirds of patients who completed a 1-year follow-up [ 54 ], indicating that moderate to severe pain might be persistent in patients with ALS.…”

Section: Characteristics Of Painmentioning

confidence: 99%

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Pain in amyotrophic lateral sclerosis: a narrative review

Kwak

2022

J Yeungnam Med Sci

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Amyotrophic lateral sclerosis (ALS) is a rapidly progressive neurodegenerative condition characterized by loss of motor neurons, resulting in motor weakness of the limbs and/or bulbar muscles. Pain is a prevalent but neglected symptom of ALS, and it has a significant negative impact on the quality of life of patients and their caregivers. This review outlines the epidemiology, clinical characteristics, underlying mechanisms, and management strategies of pain in ALS to improve clinical practice and patient outcomes related to pain. Pain is a prevalent symptom among patients with ALS, with a variable reported prevalence. It may occur at any stage of the disease and can involve any part of the body without a specific pattern. Primary pain includes neuropathic pain and pain from spasticity or cramps, while secondary pain is mainly nociceptive, occurring with the progression of muscle weakness and atrophy, prolonged immobility causing degenerative changes in joints and connective tissue, and long-term home mechanical ventilation. Prior to treatment, the exact patterns and causes of pain must first be identified, and the treatment should be tailored to each patient. Treatment options can be classified into pharmacological treatments, including nonsteroidal anti-inflammatory drugs, antiepileptic drugs, drugs for cramps or spasticity, and opioid; and nonpharmacological treatments, including positioning, splints, joint injections, and physical therapy. The development of standardized and specific assessment tools for pain-specific to ALS is required, as are further studies on treatments to reduce pain, diminish suffering, and improve the quality of life of patients with ALS.

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Section: Characteristics Of Painsupporting

confidence: 84%

Section: Characteristics Of Painmentioning

confidence: 99%

Pain in amyotrophic lateral sclerosis: a narrative review

Kwak

2022

J Yeungnam Med Sci

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“…Phenotype risk scores: The top associations identified in the PheWAS analysis conducted 1 year prior to ALS diagnosis were largely consistent with previous reports. The majority of these associations were musculoskeletal symptoms, such as joint pain [37, 38] and deformities of limbs, and neurological or mental-related symptoms (e.g., abnormal movement [39], neurological disorders [40]). These findings provide evidence of the complex interplay between ALS and circulatory health.…”

Section: Discussionmentioning

confidence: 99%

Improving prediction models of amyotrophic lateral sclerosis (ALS) using polygenic, pre-existing conditions, and survey-based risk scores in the UK Biobank

Jin,

Boss,

Bakulski

et al. 2024

Preprint

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Background and Objectives: Amyotrophic lateral sclerosis (ALS) causes profound impairments in neurological function and a cure for this devastating disease remains elusive. Early detection and risk stratification are crucial for timely intervention and improving patient outcomes. This study aimed to identify predisposing genetic, phenotypic, and exposure-related factors for Amyotrophic lateral sclerosis using multi-modal data and assess their joint predictive potential. Methods: Utilizing data from the UK Biobank, we analyzed an unrelated set of 292 ALS cases and 408,831 controls of European descent. Two polygenic risk scores (PRS) are constructed: ″GWAS Hits PRS″ and ″PRS-CS,″ reflecting oligogenic and polygenic ALS risk profiles, respectively. Time-restricted phenome-wide association studies (PheWAS) were performed to identify pre-existing conditions increasing ALS risk, integrated into phenotypic risk scores (PheRS). A poly-exposure score (″PXS″) captures the influence of environmental exposures measured through survey questionnaires. We evaluate the performance of these scores for predicting ALS incidence and stratifying risk, adjusting for baseline demographic covariates. Results: Both PRSs modestly predicted ALS diagnosis, but with increased predictive power when combined (covariate-adjusted receiver operating characteristic [AAUC] = 0.584 [0.525, 0.639]). PheRS incorporated diagnoses 1 year before ALS onset (PheRS1) modestly discriminated cases from controls (AAUC = 0.515 [0.472, 0.564]). The ″PXS″ did not significantly predict ALS. However, a model incorporating PRSs and PheRS1 improved prediction of ALS (AAUC = 0.604 [0.547, 0.667]), outperforming a model combining all risk scores. This combined risk score identified the top 10% of risk score distribution with a 4-fold higher ALS risk (95% CI: [2.04, 7.73]) versus those in the 40%-60% range. Discussions: By leveraging UK Biobank data, our study uncovers predisposing ALS factors, highlighting the improved effectiveness of multi-factorial prediction models to identify individuals at highest risk for ALS.

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“…Fatigue is a common non-motor symptom in ALS, and previous reports have shown that approximately 50% − 80% of ALS patients have fatigue [ 10 , 11 ]. Pain is also a common non-motor symptom of ALS, with a frequency reported to be 56% − 70% [ 12 ]. In this study, approximately 80% of the patients had fatigue and 60% had pain, similar to previous reports.…”

Section: Discussionmentioning

confidence: 99%

Investigation of non-motor symptoms in patients with amyotrophic lateral sclerosis

et al. 2022

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Abstract[Objective] Few studies have comprehensively investigated the non-motor symptoms of amyotrophic lateral sclerosis (ALS). We aimed to investigate this aspect of ALS. [Methods] We held a nationwide webinar, titled “ALS Café,” and distributed self-report questionnaires to ALS patients. In addition to the frequency of non-motor symptoms such as fatigue, pain, sleep disorders, defecation disorders, sialorrhea, and sexual problems, we evaluated the quality of life (QoL), ALS Functional Rating Scale-Revised (ALSFRS-R), and Patient Health Questionnaire-9 (PHQ-9). [Results] The average age of the 33 respondents (19 male, 14 female) was 60.8 ± 11.2; 96.7% of respondents had some non-motor symptoms. The median ALSFRS-R was 32.0, and seven (21.2%) of the respondents had a PHQ-9 score of 10 or higher. Fatigue was the most common non-motor symptom (81.8%), followed by pain (60.6%), defecation disorders (57.6%), sleep disorders (48.5%), sialorrhea (48.5%), and sexual problems (24.2%). Fatigue was more frequent in females (P = 0.03). Among the non-motor symptoms, pain was the most common factor affecting QoL, followed by fatigue. More than 90% of ALS patients answered that they had never consulted a physician/counselor about sexual problems. Patients with pain had higher PHQ-9 scores than those without (P = 0.01). There was no correlation between the ALSFRS-R score and QoL and PHQ-9. [Conclusions] Most patients with amyotrophic lateral sclerosis had non-motor symptoms, and fatigue and pain were the most common. We showed that many non-motor symptoms affected QoL without correlating with ALSFRS-R score. Attention should be paid to those even if the motor symptoms of ALS are mild.

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Characteristics of pain and the burden it causes in patients with amyotrophic lateral sclerosis – a longitudinal study

Cited by 8 publications

References 32 publications

Pain in amyotrophic lateral sclerosis: a narrative review

Pain in amyotrophic lateral sclerosis: a narrative review

Improving prediction models of amyotrophic lateral sclerosis (ALS) using polygenic, pre-existing conditions, and survey-based risk scores in the UK Biobank

Investigation of non-motor symptoms in patients with amyotrophic lateral sclerosis

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