Dataset Information

Functional Decline is Associated with Hopelessness in Amyotrophic Lateral Sclerosis (ALS).

ABSTRACT: OBJECTIVE:To determine the relationships between hopelessness, depression, quality of life, and disease progression in ALS. METHODS:Hopelessness and depression were assessed prospectively in a cohort of people with ALS using the Beck Hopelessness scale (BHS) and the ALS Depression Inventory (ADI-12), respectively. ALS Specific Quality of Life and measures of functional status (ALSFRS-R and forced vital capacity) were collected. Associations between changes in psychological health and functional scores were calculated using Spearman correlation coefficients. RESULTS:Twenty-five people with ALS had at least 2 visits and were followed for a mean of 11 (± 6) months. People with hopelessness and depression reported worse quality of life (p<0.01 for both associations). Decline in function between any two visits measured by ALSFRS-R (p<0.01) and FVC (p=0.02) correlated with increased hopelessness, but not depression. CONCLUSION:This study highlights the importance of monitoring hopelessness in ALS, particularly in patients with faster functional decline.

SUBMITTER: Paganoni S

PROVIDER: S-EPMC5548143 | biostudies-literature | 2017 Apr

REPOSITORIES: biostudies-literature

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Functional Decline is Associated with Hopelessness in Amyotrophic Lateral Sclerosis (ALS).

Paganoni Sabrina S McDonnell Erin E Schoenfeld David D Yu Hong H Deng Jing J Atassi Hamza H Sherman Alexander A Yerramilli-Rao Padmaja P Cudkowicz Merit M Atassi Nazem N

Journal of neurology & neurophysiology 20170429 2

<h4>Objective</h4>To determine the relationships between hopelessness, depression, quality of life, and disease progression in ALS.<h4>Methods</h4>Hopelessness and depression were assessed prospectively in a cohort of people with ALS using the Beck Hopelessness scale (BHS) and the ALS Depression Inventory (ADI-12), respectively. ALS Specific Quality of Life and measures of functional status (ALSFRS-R and forced vital capacity) were collected. Associations between changes in psychological health ...[more]

PMID: 28798889

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Project description:Thoughtful clinical trial design is critical for efficient therapeutic development, particularly in the field of amyotrophic lateral sclerosis (ALS), where trials often aim to detect modest treatment effects among a population with heterogeneous disease progression. Appropriate outcome measure selection is necessary for trials to provide decisive and informative results. Investigators must consider the outcome measure's reliability, responsiveness to detect change when change has actually occurred, clinical relevance, and psychometric performance. ALS clinical trials can also be performed more efficiently by utilizing statistical enrichment techniques. Innovations in ALS prediction models allow for selection of participants with less heterogeneity in disease progression rates without requiring a lead-in period, or participants can be stratified according to predicted progression. Statistical enrichment can reduce the needed sample size and improve study power, but investigators must find a balance between optimizing statistical efficiency and retaining generalizability of study findings to the broader ALS population. Additional progress is still needed for biomarker development and validation to confirm target engagement in ALS treatment trials. Selection of an appropriate biofluid biomarker depends on the treatment mechanism of interest, and biomarker studies should be incorporated into early phase trials. Inclusion of patients with ALS as advisors and advocates can strengthen clinical trial design and study retention, but more engagement efforts are needed to improve diversity and equity in ALS research studies. Another challenge for ALS therapeutic development is identifying ways to respect patient autonomy and improve access to experimental treatment, something that is strongly desired by many patients with ALS and ALS advocacy organizations. Expanded access programs that run concurrently to well-designed and adequately powered randomized controlled trials may provide an opportunity to broaden access to promising therapeutics without compromising scientific integrity or rushing regulatory approval of therapies without adequate proof of efficacy.

Dataset Information

Functional Decline is Associated with Hopelessness in Amyotrophic Lateral Sclerosis (ALS).

Publications

Functional Decline is Associated with Hopelessness in Amyotrophic Lateral Sclerosis (ALS).

Similar Datasets

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