Research Papers

The list below comprises all research publications of full papers from the TONiC or FINDeRS studies. We do not include published abstracts or other research outputs such as posters.

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EQ-5D-5L in multiple sclerosis: Estimated utility values, minimal (clinically) important changes, and direct and indirect influences over time

Young, C. A.

2025

Value in Health

Fatigue in amyotrophic lateral sclerosis/motor neuron disease: prevalence, influences and trajectories

Young, C. A.

2025

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration

Patient reported outcome measures require scale metrification and quantified precision: evidence from the assessment of breathlessness in people with ALS/MND

Young, C. A.

2025

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration

Is multiple sclerosis a length-dependent central axonopathy? Some empirical data from the TONiC study

Mills, R. J.

2025

Multiple Sclerosis and Related Disorders

Health locus of control and its relationship with quality of life and functioning in Multiple Sclerosis: Exploring the mediating role of self-efficacy

Rothman, I.

2025

Sclerosis

Clinical and socio-demographic characteristics of people with multiple sclerosis at the time of diagnosis: Influences on outcome trajectories

Young, C. A.

2025

Journal of Neurological Sciences

Determinants of Stigma in ALS/MND

Young, C. A.

2025

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration

Correlates and trajectories of relapses in relapsing-remitting multiple sclerosis

Young, C. A.

2024

Neurological Sciences

Physical and psychological aspects of multiple sclerosis: revisiting the Multiple Sclerosis Impact Scale (MSIS-29)

Young, C. A.

2024

Multiple Sclerosis Journal

Assessing disability progression using the WHODAS 2.0 in multiple sclerosis: Investigating clinical and socio-demographic factors in a large longitudinal cohort study (TONiC-MS)

Parker, R. M.

2025

Multiple Sclerosis and Related Disorders

Stigma and health outcomes in MS: a systematic review

Powell, B.

2024

BMC Neurology

Rasch analysis of the modified Fatigue Severity Scale in neuromuscular disorders and comparison between sex, age and diagnoses

Fulton, J. P. J.

2024

Muscle & Nerve

Prevalence, treatment and correlates of depression in multiple sclerosis

Young, C. A.

2024

Multiple Sclerosis and Related Disorders

Rasch analysis of the Unidimensional Self‐Efficacy Scale in Neuromuscular Disorders and comparison between sex, age, and diagnoses

Fulton, J. P. J.

2024

Muscle & Nerve

Improving the measurement properties of the Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised (ALSFRS-R): deriving a valid measurement total for the calculation of change

Young, C. A.

2024

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration

Dyspnea (breathlessness) in amyotrophic lateral sclerosis/motor neuron disease: prevalence, progression, severity, and correlates

Young, C. A.

2024

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration

Multiple Sclerosis vision questionnaire (MSVQ-7): Reliability, validity, precision and discrimination

Young, C. A.

2023

Multiple Sclerosis and Related Disorders

Measuring disability in multiple sclerosis: the WHODAS 2.0

Young, C. A.

2023

Quality of Life Research

The association of health locus of control with clinical and psychosocial aspects of living with Multiple Sclerosis

Rothman, I.

2023

Journal of Clinical Psychology in Medical Settings

Prevalence of depression in amyotrophic lateral sclerosis/motor neuron disease: multi-attribute ascertainment and trajectories over 30 months

Young, C. A.

2022

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration

Measuring disability in amyotrophic lateral sclerosis/motor neuron disease: the WHODAS 2.0-36, WHODAS 2.0-32, and WHODAS 2.0-12

Young, C. A.

2022

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration

Measuring coping in multiple sclerosis: The Coping Index-MS

Young, C. A.

2022

Multiple Sclerosis Journal

The four self-efficacy trajectories among people with multiple sclerosis: Clinical associations and implications

Young, C. A.

2022

Journal of Neurological Sciences

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

Ando, H.

2020

Disability and Rehabilitation

Understanding quality of life across different clinical subtypes of multiple sclerosis: a thematic analysis

Ando, H.

2022

Quality of Life Research

Fatigue and anxiety mediate the effect of dyspnea on quality of life in amyotrophic lateral sclerosis

Young, C. A.

2021

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration

Quality of life in MS is dominated by fatigue, disability and self-efficacy

Young, C. A.

2021

Neurological Sciences

Measuring coping in people with amyotrophic lateral sclerosis using the Coping Index-ALS: A patient derived, Rasch compliant scale

Young, C. A.

2020

Journal of Neurological Sciences

Measuring quality of life in ALS/MND: validation of the WHOQOL-BREF

Young, C. A.

2020

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration

The WHOQOL-BREF: a modern psychometric evaluation of its internal construct validity in people with multiple sclerosis

Pomeroy, I. M.

2020

Quality of Life Research

Do pain, anxiety and depression influence quality of life for people with amyotrophic lateral sclerosis/motor neuron disease? A national study reconciling previous conflicting literature

Edge, R.

2020

Journal of Neurology

Health utilities and costs for Motor Neurone Disease

Moore, A.

2019

Value in Health

Test equating sleep scales: applying the Leunbach's model.

Adroher, N. D.

2019

BMC Medical Research Methodology

Exploring and Addressing ‘Concerns’ for Significant Others to Extend the Understanding of Quality of Life With Amyotrophic Lateral Sclerosis: A Qualitative Study

Ando, H.

2019

Journal of Central Nervous System Disease

Use of coping strategies in MND/ALS: association with demographic and disease-related characteristics

Schlüter, D. K.

2019

Acta Neurologica Scandinavica

The relationships between symptoms, disability, perceived health and quality of life in amyotrophic lateral sclerosis/motor neuron disease

Young, C. A.

2019

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration

Use of coping strategies in multiple sclerosis: association with demographic and disease-related characteristics

Holland, D. P.

2019

Multiple Sclerosis and Related Disorders

Risk factors for social withdrawal in amyotrophic lateral sclerosis/motor neurone disease

Schlüter, D. K.

2018

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration

Mapping ALSFRS-R and ALSUI to EQ-5D in patients with motor neurone disease

Moore, A.

2018

Value in Health

Development and validation of Spasticity Index-Amyotrophic Lateral Sclerosis

Milinis, K.

2018

Acta Neurologica Scandinavica

Quality of life for post-polio syndrome: a patient derived, Rasch standard scale

Young, C. A.

2018

Disability and Rehabilitation

Measuring physical and cognitive fatigue in people with post-polio syndrome: Development of the (NFI-PP)

Young, C. A.

2018

Physical Medicine & Rehabilitation Journal

Rasch analysis of SF-Qualiveen in multiple sclerosis

Milinis, K.

2017

Neurourology and Urodynamics

Economic Studies in Motor Neurone Disease: A systematic methodological review

Moore, A.

2017

Pharmacoeconomics

Sexual functioning in multiple sclerosis: relationships with depression, fatigue and physical function

Young, C. A.

2017

Multiple Sclerosis Journal

The Neurological Sleep Index: a suite of new sleep scales for multiple sclerosis

Mills, R. J.

2016

Multiple Sclerosis Journal - Experimental, Translational and Clinical

Spasticity in Multiple Sclerosis: associations with impairments and overall quality of life

Milinis, K.

2016

Multiple Sclerosis and Related Disorders

Systematic review of the influence of spasticity on quality of life in adults with chronic neurological conditions

Milinis, K.

2016

Disability and Rehabilitation

The patient experience of fatigue in MND

Gibbons, C. J.

2013

Frontiers in Psychology

Is the Epworth sleepiness scale suitable for use in stroke?

Mills, R. J.

2013

Topics in Stroke Rehabilitation

Poststroke fatigue: the patient perspective

Young, C. A.

2013

Topics in Stroke Rehabilitation

Assessing social isolation in motor neurone disease: a Rasch analysis of the MND Social Withdrawal Scale

Gibbons, C. J.

2013

Journal of the Neurological Sciences

Rasch analysis of the WHOQOL-BREF in post polio syndrome

Pomeroy, I. M.

2013

Journal of Rehabilitation Medicine

The impact of fatigue and psychosocial variables on qol for patients with MND

Gibbons, C. J.

2013

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration

Perceived changes and minimum clinically important difference of the (NFI-MS)

Mills, R. J.

2013

Multiple Sclerosis Journal

Assessing and managing depression and fatigue in MND

Gibbons, C. J.

2012

Neurodegenerative Disease Management

The unidimensional self-efficacy scale for MS (USE-MS): developing a patient based and patient reported outcome

Young, C. A.

2012

Multiple Sclerosis Journal

Validation of the Neurological Fatigue Index for stroke (NFI-Stroke)

Mills, R. J.

2012

Health and Quality of Life Outcomes

Development of a PROM for fatigue in MND

Gibbons, C. J.

2011

Health and Quality of Life Outcomes

Rasch analysis of the (HADS) for use in MND

Gibbons, C. J.

2011

Health and Quality of Life Outcomes

The relationship between fatigue and other clinical features of MS

Mills, R. J.

2011

Multiple Sclerosis Journal

Rasch analysis of the (MFIS) in MS

Mills, R. J.

2010

Journal of Neurology, Neurosurgery and Psychiatry

Development of a patient reported outcome scale for fatigue in MS: (NFI-MS)

Mills, R. J.

2010

Health and Quality of Life Outcomes

Rasch analysis of the Fatigue Severity Scale in MS

Mills, R. J.

2009

Multiple Sclerosis Journal

A medical definition of fatigue in multiple sclerosis

Mills, R. J.

2008

QJM: An International Journal of Medicine

Validation and reliability of the Neuropathic Pain Scale (NPS) in multiple sclerosis

Rog, D. J.

2007

The Clinical Journal of Pain

Perceptions of self-efficacy and rehabilitation among neurologically disabled adults

Dixon, G.

2007

Clinical Rehabilitation

Worries and concerns of patients with multiple sclerosis: development of an assessment scale

Thornton, E. W.

2006

Multiple Sclerosis Journal

Development and validation of a self-efficacy measure for people with multiple sclerosis: the Multiple Sclerosis Self-efficacy Scale

Rigby, S. A.

2003

Multiple Sclerosis Journal

Measuring the impact of multiple sclerosis on psychosocial functioning: the development of a new self-efficacy scale

Airlie, J.

2001

Clinical Rehabilitation

Quality of life issues in motor neurone disease: the development and validation of a coping strategies questionnaire, the MND Coping Scale.

Lee, J. N.

2001

Journal of Neurological Sciences