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)