Quality of life in amyotrophic lateral sclerosis patients and care burden of caregivers in sardinia during COVID-19 pandemic

D Gentili, G Deiana, V Chessa, A Calabretta, E Marras… - Healthcare, 2023 - mdpi.com
Amyotrophic Lateral Sclerosis (ALS) is a rare neurogenerative disorder whose median
survival ranges from 2 to 4 years after symptomatic onset. Therefore, the global Quality of …

Coping and end-of-life decision-making in ALS: A qualitative interview study

C Spoden, O Wenzel, A Erdmann, G Neitzke… - Plos one, 2024 - journals.plos.org
How do people with amyotrophic lateral sclerosis (PALS) deal with their diagnosis and
engage in end-of-life decision-making? What informational or supportive needs do they …

Flexibility to manage and enhance quality of life among people with motor neurone disease

H Ando, R Cousins, CA Young - Disability and rehabilitation, 2022 - Taylor & Francis
Objectives To identify influential factors for quality of life (QoL) among individuals with motor
neurone disease (MND) and explore how regulatory flexibility and psychological flexibility …

Wish to die and reasons for living among patients with amyotrophic lateral sclerosis

A Verschueren, G Kianimehr, C Belingher… - … Lateral Sclerosis and …, 2019 - Taylor & Francis
Abstract Objective: In Amyotrophic lateral sclerosis (ALS), disease severity, ineffective
treatment, and increasing dependence on caregivers may give rise to hopelessness and …

Unmet supportive care needs mediate the relationship between functional status and quality of life in patients with amyotrophic lateral sclerosis

J Oh, SH Kim, JA Kim - Palliative & Supportive Care, 2019 - cambridge.org
ObjectiveThe aims of this study were to identify the unmet care needs and to examine the
mediating effect of unmet supportive care needs in the relationship between functional …

Experiences of acceptance and commitment therapy for people living with motor neuron disease (MND): a qualitative study from the perspective of people living with …

C Rawlinson, RL Gould, CJ McDermott… - The Cognitive …, 2024 - cambridge.org
Background: Motor neuron disease (MND) is a progressive, fatal, neurodegenerative
condition that affects motor neurons in the brain and spinal cord, resulting in loss of the …

PALS: Patching ALS through crowdsourced advice, social links & public awareness

R Cave, K Kocemba, S Dajic, H Bostock… - Extended Abstracts of the …, 2019 - dl.acm.org
Amyotrophic Lateral Sclerosis (ALS) is a serious and poorly understood disease, impacting
50,000 people a year globally. Our research found that people with ALS express a lack of …

A ticking time bomb: the lived experience of adult individuals diagnosed with amyotrophic lateral sclerosis

SM Cuschieri - 2023 - um.edu.mt
Background: Amyotrophic Lateral Sclerosis (ALS) is a fatal neurodegenerative disease with
involvement of the upper and lower motor neurons in the brain and spinal cord. It is …

[HTML][HTML] Clustering and switching strategies in verbal fluency tasks: comparison between amyotrophic lateral sclerosis (ALS) and healthy controls

N Mardani, N Jalilevand, M Ebrahimipour… - … Sciences & Research, 2019 - jrsr.sums.ac.ir
Background: Recent studies have demonstrated that ALS patients suffer from cognitive and
language impairments. One of the most striking and consistent cognitive dysfunctions in …

Penn State Health ALS Center uses research to improve patients' quality of life

Z Simmons - medicalupdate.pennstatehealth.org
Today, the center—the only one of its kind in central Pennsylvania combining
multidisciplinary clinical care and research—follows more than 230 patients. Its research …