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Glossary of terms

​​The table below is a guide as it simplifies major research areas into one short phrase. It is provided to make it easier to search the research papers. 

Conversion table (nomogram)

Table showing the equivalent values between a raw (ordinal) score and an interval score, allowing for easy conversion

Cross-sectional

Analyses data from a population where each person is studied once

Epidemiology

How often conditions occur in different groups of people and why

Group-based trajectory model (GBTM)

Statistical technique that identifies subgroups within a population that show similar patterns of change over time

Health Economics

Analyses how resources are used an/or allocated to healthcare

Longitudinal

Analyses data where people provide information more than once, so it is possible to study change

Minimal Important Change (MIC)

The smallest change in a Patient Reported Outcome Measure (PROM) that a patient considers to be important

Qualitative research

Understanding subjective experiences & beliefs, rather than measuring them

Rasch analysis

Measurement science that examines PROMs for their quality 

Structural Equation Model (SEM)

Statistical technique used to analyse the relationships between multiple variables 

Systematic Review

Comprehensive synthesis of research findings on a specific topic

Thematic analysis

Identifying patterns (themes) in qualitative data by examining interviews to find recurring ideas

TONiC Patient Reported Outcome Measures (PROMs)

Questionnaires that allow patients to directly report on their health, including how they feel, function, and experience their condition

Validation 

A multi-step process to check that a PROM (scale) is fit for use in a specified population

Most of the patient reported outcome measures (PROMs) used in TONiC or FINDeRS are listed below, with their abbreviations in brackets. 

 

The ones in bold are TONiC PROMS and free for academic or not-for-profit users by application to wcft.tonic@nhs.net (commercial users pay a fee, which is used to fund more translations and validation in other languages).

Patient Reported Outcome Measures (PROMs)

Amyotrophic Lateral Sclerosis Rating Scale revised (ALSFRS-R)

Coping Orientation to Problems Experienced Inventory (COPE-60)

Coping Index-ALS

Coping Index-MS

Dyspnea-12

MND Social Withdrawal Scale (MND SWS)

Multiple Sclerosis Impact Scale (MSIS-29)

Multiple Sclerosis Intimacy and Sexuality Questionnaire (MSISQ-15)

Multiple Sclerosis Vision Questionnaire (MSVQ-7)

Multidimensional Health Locus of Control Scale (MHLC) Form C

Neurological Fatigue Index-CVA (NFI-CVA)

Neurological Fatigue Index-MND (NFI-MND)

Neurological Fatigue Index-MS (NFI-MS)

Neurological Fatigue Index-Post Polio (NFI-PP)

Neurological Sleep Index-MS (NSI-MS)

Neuropathic Pain Scale (NPS)

Penn State Worry Questionnaire

Rosenberg Self Esteem Scale

SF-Qualiveen

Spasticity Index-ALS (SI-ALS)

Stigma Scale for Chronic Illness (SSCI-8)

Unidimensional Self-Efficacy Scale for MS (USE-MS)

World Health Organization Disability Assessment Schedule (WHODAS 2.0) 

World Health Organization Quality of Life Scale (WHOQoL-BREF)

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