Scales and Scores

Scientific Panels Submissions

Scales and Scores

The section of Scales and Scores provides a database of validated scores and scales used in neurology in English and other languages on the EAN website. It provides clinicians and researchers in the field of neurology access to the most commonly available and validated scales and scores.

EAN Scientific Panels

ScalesAssessment of autonomic dysfunction in Parkinson's disease: the SCOPA-AUTDownload
ScalesUrinary Symptom Profile - the USP has been validated for use in neurological patients to capture lower urinary  symptomsDownload
ScalesShort-form Qualiveen (sf-Qulaiveen)- to capture bladder-realted quality of life impairmentDownload
ScalesASEX- Arizona Sexual Experiences Scale ­ this is simple to use and appropriate for a clinical settingDownload
Scale Manual Muscle Testing ProceduresDownload
ScaleATS Statement: Guidelines for the Six-Minute Walk TestDownload
Scale

A rating scale for amyotrophic lateral sclerosis: description and preliminary experience

Download
Scale

Scoring systems to screen for diabetic peripheral neuropathy

Download
Score

The MG Composite, A valid and reliable outcome measure for myasthenia gravis

Download

Scales

 

Coma/Near-Coma Scale (CNC)

Area covered: differentiation: coma/near coma, moderat, marked, extreme coma

Symptoms addressed: Visual, auditory, command following, threat response, olfactory, tactile, pain, vocalization

Time to complete: 10 min

Number of items: 8 (11)

Completed by: Healthprofessional

Formal qualification necessary: no

Validation Publication: Rappaport M, Dougherty AM, Kelting DL. Evaluation of
coma and vegetative states. Arch Phys Med Rehabil 1992;73:
628-34.

How to Accesswww.archives-pmr.org/article/0003-9993(92)90127-I/pdf  (open access)

Recommended by: Aspen Work group
diagnosis categories are not consistent with Aspen workgroup criteria

 

Coma Recovery Sacle-Revised (CRS-R)

Area covered: differentiation: coma/UWS/MCS/

Symptoms addressed: Auditory, visual, motor, oral, communication, arousal

Time to complete: 25 min

Number of items: 6(23)

Completed by: Healthprofessional

Formal qualification necessary: yes

Validation Publication: Giacino JT, Kalmar K, Whyte J, The JFK Coma Recovery Scale-Revised: measurement characteristics and diagnostic utility.JArch Phys Med Rehabil. 2004 Dec;85(12):2020-9.

How to Access: www.archives-pmr.org/article/S0003-9993(04)00477-0/fulltext (open access)

 

Comprehensive Levels of Consciousness Scale (CLOCS)

Area covered: DOC - motor behiour scale

Symptoms addressed: Eye responses, motor, posture, communication, general responsiveness

Time to complete: 5 min

Number of items: 7(7)

Completed by: Healthprofessional

Formal qualification necessary: no

Validation Publication: Stanczak DE, White JG 3rd, Gouview WD, et al. Assessment of
level of consciousness following severe neurological insult: a comparison of the psychometric qualities of the Glasgow Coma Scale and the Comprehensive Level of Consciousness Scale. J Neurosurg 1984;60:955-60.

How to Access: thejns.org/view/journals/j-neurosurg/60/5/article-p955.xml (no open access)

not recommended  for seral bedside behavioural assessment of DOC by ACRM, 2010

 

Disorders of Consciousness Scale (DOCS)

Area covered: DOC -assessement

Symptoms addressed: Auditory, visual, tactile, sensory, swallowing, olfactory

Time to complete: 45 min

Number of items: 1(23)

Completed by: Healthprofessional

Formal qualification necessary: no

Validation Publication: Pape TL, Senno RG, Guernon A, Kelly JP. A measure of neurobehavioral
functioning after coma. Part II: clinical and scientific implementation. J Rehabil Res Dev 2005;42:19-27.

How to Access: https://pdfs.semanticscholar.org/b905/3bbbd5efd409608aaec8b3c38c32f401028f.pdf (no open access)

Recommended by: ACRM, 2010:may be used to assess DOC with moderate reservations.

 

Full Outline of UnResponsivesess Score (FOUR)

Area covered: coma evaluation

Symptoms addressed: Eye response, motor response, respiration, brainstem reflexes

Time to complete: 10 min

Number of items: 4(4)

Completed by: Healthprofessional

Formal qualification necessary: no

Validation Publication: Wijdicks EF. Clinical scales for comatose patients: the Glasgow
Coma Scale in historical context and the new FOUR score. Rev Neurol Dis 2006;3:109-17.

How to Access: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4071859/ (open access)

Recommended by: ACRM:not recommended for serial bedside behavioral assessment of DOC

good reliability rating and rapid application in intensive care for intubated patients

 

Glasgow Coma Scale (GLS)

Area covered: coma evaluation

Symptoms addressed: Eye, verbal, motor, brainstem reflexes

Time to complete: 5 min

Number of items:4(4)

Completed by: Healthprofessional

Formal qualification necessary: no

Validation Publication: Born JD, Hans P, Albert A, Bonnal J. Interobserver agreement in
assessment of motor response and brain stem reflexes. Neurosurgery
1987;20:513-7.

How to Access: https://academic.oup.com/neurosurgery/article-abstract/20/4/513/2745600 (open access)

Recommended by: ACRM:not recommended for serial bedside behavioral assessment of DOC

quick application in intensive care for coma evaluation, does not intergrate the fact of intubation

 

Innsbruck Coma Scale (INNS)

Area covered: behaviour scale

Symptoms addressed: Eye responses, auditory, pain posture, oral

Time to complete: 10 min

Number of items: 1(8)

Completed by: Healthprofessional

Formal qualification necessary: no

Validation Publication: Benzer A, Mitterschiffthaler G, Marosi M, et al. Prediction of
non-survival after trauma: Innsbruck Coma Scale. Lancet 1991; 338:977-8.

How to Access: https://www.sciencedirect.com/science/article/pii/014067369191840Q (no open access)

 

Loewenstein Communicaton Scale (LOEW)

Area covered: evaluation of communication

Symptoms addressed: Mobility, respiration, visual, auditory, communication

Time to complete: 25 min

Number of items: 5(25)

Completed by: Healthprofessional

Formal qualification necessary: no

Validation Publication: Borer-Alafi N, Gil M, Sazbon L, Korn C. Loewenstein communication
scale for the minimally responsive patient. Brain Inj 2002;16:593-609.

How to Access: https://www.tandfonline.com/doi/abs/10.1080/02699050110119484 (open Access)

not recommended ACRM:at this time for serial bedside behavioral assessment of DOC.

 

Swedish Reaction Level Scale-1985 (RLS85)

Area covered: evaluation of levls of reaction

Symptoms addressed: Responsiveness

Time to complete: 15 min

Number of items: 1(1)

Completed by: Healthprofessional

Formal qualification necessary: no

Validation Publication: Stålhammar D, Starmark JE, Holmgren E, et al. Assessment of
responsiveness in acute cerebral disorders: a multicentre study on
the reaction level scale (RLS 85). Acta Neurochir 1988;90:73-80.

How to Access: https://link.springer.com/article/10.1007/BF01560558 (open Access)

Recommended by: ACMR: not recommended at this time for serial bedside behavioral assessment of DOC.

 

Sensory Modality Assessment Technique (SMART)

Area covered: differentiation of coma/UWS/MCS

Symptoms addressed: Auditory, vision, tactile, olfactory, gustatory, wakefulness, motor, communication

Time to complete: 60+ min

Number of items: 8(8)

Completed by: Healthprofessional

Formal qualification necessary: yes

Validation Publication: Gill-Thwaites H. The Sensory Modality Assessment Rehabilitation
Technique—a tool for assessment and treatment of patients
with severe brain injury in a vegetative state. Brain Inj 1997;11:
723-34.

How to Access: https://pdfs.semanticscholar.org/dbb5/6c20c0161224212fd1c81ac244bba7f3d2e4.pdf (open access)

Recommended by: ACMR: may be used to assess DOC with moderate reservations.

 

Sensory Stimulation Assessment Mesures (SSAM)

Area covered: neurosensorial evaluation

Symptoms addressed: Auditory, vision, tactile, olfactory, eye opening, motor, vocalization

Time to complete: 30 min

Number of items: 5(15)

Completed by: Healthprofessional

Validation Publication: Rader MA, Ellis DW. The Sensory Stimulation Assessment
Measure (SSAM): a tool for early evaluation of severely braininjured
patients. Brain Inj 1994;8:309-21.

How to Access: https://www.tandfonline.com/doi/abs/10.3109/02699059409150982 (open access)

Recommended by: ACMR:may be used to assess DOC with moderate reservations. 

 

Wessex Head Injury Matrix (WHIM)

Area covered: behaviour assessment of DOC patients

Symptoms addressed: Basic behaviors, social/communication, attention/cognitive, orientation/memory

Time to complete: 30-120 min

Number of items: 4(58)

Completed by: Healthprofessional

Formal qualification necessary: no

Validation Publication: Shiel A, Horn SA, Wilson BA, Watson MJ, Campbell MJ, McLellan
DL. The Wessex Head Injury Matrix (WHIM) main scale: a preliminary report on a scale to assess and monitor patient recovery after severe head injury. Clin Rehabil 2000;14:408-16.

How to Access: https://journals.sagepub.com/doi/abs/10.1191/0269215500cr326oa (open access)

Recommended by: idem

very centered on evaluation of cognitive funciton of DOC patients, complementary but no possibiliy ot differentiate DOC phases

 

Western Neuro Sensory Stimulation Profile (WNSSP)

Area covered: behaviour assessment of DOC patients

Symptoms addressed: Visual, tactile, olfactory, arousal/attention, auditory, expressive communication

Time to complete: 45 min

Number of items: 5(32)

Completed by: Healthprofessional

Formal qualification necessary: ?

Validation Publication: Ansell BJ. Slow-to-recover patients: improvement to rehabilitation
readiness. J Head Trauma Rehabil 1993;8:88-98.

How to Access: https://journals.lww.com/headtraumarehab/Abstract/1993/09000/Slow_to_recover_patients__Improvement_to.11.aspx (open access)

Recommended by: idem

 

Scores

 

Reuth DOC Response Assessment (RDOC-RA)

Area covered: motor behaviour observation assessement of DOC

Symptoms addressed: complementary to CRS-R Auditory, visual, motor, oral, communication, arousal

Completed by: Healthprofessional

Validation Publication: Gilutz Y, Lazary A, Karpin H, Vatine JJ, Misha T, Fortinsky H, Sharon H. Detailed behvioural assessement promotes accurate diagnosis in patientes with disorders of sconsciousness

How to Access: https://core.ac.uk/download/pdf/82884712.pdf (open access)

 

Motor Behaviour tool (MBT tool)

Area covered: motor behaviour observation assessement of DOC

Symptoms addressed: CRS-R modulation by assessement of motor behaviour

Time to complete: 25 min

Number of items: as CRS plus 10 item

Validation Publication:
Pignat JM, Mauron E, Jöhr J, Gilart de Keranflec'h C, Van De Ville D, Preti MG, Meskaldji DE, Hömberg V, Laureys S, Draganski B, Frackowiak R, Diserens K.
Outcome Prediction of Consciousness Disorders in the Acute Stage Based on a Complementary Motor Behavioural Tool. PLoS One. 2016 Jun 30;11(6).
P
 

How to Access: https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0156882 (no open access)

Scales

 

1) Objective cognitive assessment

 

Mini Mental State Examination

Symptoms addressed: Global cognitive assessment

Time to complete:  10 min

Number of items:  11

Completed by: Health professional/patient

Validation Publication: Folstein, M.F., Mini-Mental State, Journal of Psychiatry, volume 12, issue 3, pp 189-198

How to Access: http://turkpsikiyatri.org/arsiv/mmse_folstein_mchugh.pdf (open Access)

 

Montreal Cognitive Assessment (MoCA)

Symptoms addressed: Cognitive

Time to complete: 10 minutes

Number of items: 30

Completed by: Health professional/patient

Validation publication: The Montreal Cognitive Assessment, MoCA: a brief screening tool for mild cognitive impairment., Nasreddine ZS, et al., J Am Geriatr Soc. 2005 Apr;53(4):695-9.

 

Clock-drawing test (CDT)

Symptoms addressed: Visuo-constructive and executive functions

Time to complete: 5 minutes

Number of items: 1

Completed by: Patient

Validation publication: Validity and Clinical Utility of Different Clock Drawing Test Scoring Systems in Multiple Forms of Dementia., Duro D, et al., J Geriatr Psychiatry Neurol. 2018 May;31(3):114-122

 

Frontal Assessment Battery (FAB)

Symptoms addressed: Frontal lobe functions

Time to complete: 5 minutes

Number of items: 6

Completed by: Health professional/patient

Validation publication: Frontal assessment battery and differential diagnosis of frontotemporal dementia and Alzheimer disease., Slachevsky A, et al., Arch Neurol. 2004 Jul;61(7):1104-7.

How to Access: 

https://psychscenehub.com/wp-ontent/uploads/2018/07/Frontal_FAB_Scale.pdf

 

Addenbrooke´s Cognitive Examination - III (ACE - III)

Symptoms addressed: Global cognitive assessment

Time to complete: 25-40 minutes

Number of items: 100

Completed by: Health professional/patient

Validation publication: Validation of the Addenbrooke's Cognitive Examination III in frontotemporal dementia and Alzheimer's disease., Hsieh S, et al., Dement Geriatr Cogn Disord. 2013;36(3-4):242-50.

How to Access: https://www.sydney.edu.au/brain-mind/resources-for-clinicians/dementia-test.html

 

2) Subjective cognitive assessment

 

The Subjective Cognitive Decline Questionnaire (SCD-Q)

Symptoms addressed: Self-perceived cognitive decline

Time to complete: 10 minutes

Number of items: 34

Completed by: Health professional/patient

Access and validation publication: The Subjective Cognitive Decline Questionnaire (SCD-Q): a validation study., Rami L, et al., J Alzheimers Dis. 2014;41(2):453-66.

 

3) Functional assessment

 

Clinical Dementia Rating (CDR) Scale

Symptoms addressed: Evaluation of staging severity of dementia

Time to complete: 15 min

Number of items: 6

Completed by: Health professional/patient´s informant

Validation Publication: The Clinical Dementia Rating (CDR): current version and scoring rules, Morris JC, et al., Neurology. 1993 Nov;43(11):2412-4

How to Accesshttps://knightadrc.wustl.edu/cdr/PDFs/CDR_Table.pdf 

 

Functional Activities Questionnaire (FAQ)

Symptoms addressed: Evaluation of staging severity of dementia

Time to complete: 5 min

Number of items: 10

Completed by: Health professional/patient´s informant/patient

Validation Publication: Measurement of functional activities in older adults in the community, Pfeffer RI, et al., J Gerontol. 1982 May;37(3):323-9.

How to Access: https://www.alz.org/careplanning/downloads/functional-activities-questionnaire.pdf

 

Activities of Daily Living - Instrumental (IADL), Basic (BADL)

Symptoms addressed: Independence in Instrumental Activities of Daily Living 

Time to complete: 5 min (IADL), 2 min (BADL)

Number of items: 22 (IADL), 6 (BADL)

Completed by: Health professional/patient´s informant/patient

Validation Publication: Assessment of older people: self-maintaining and instrumental activities of daily living. Gerontologist, Lawton MP, et al., 1969 Autumn;9(3):179-86

Access and validation Publication: https://www.ncbi.nlm.nih.gov/books/NBK470404/

 

Katz Index

Symptoms addressed: Independence in Activities of Daily Living 

Time to complete: 5 min

Number of items: 6

Completed by: Health professional

Validation Publication: Studies of illness in the aged. The Index of ADL: a standardized measure of biological and psychosocial function, Katz S., et al., JAMA. 1963;185(12):914-919.

How to Accesshttps://www.alz.org/careplanning/downloads/katz-adl.pdf (open access)

 

Instrumental Activities of Daily Living

Symptoms addressed: Independence in Instrumental Activities of Daily Living 

Time to complete: 5 min

Number of items: 8

Completed by: Healthprofessional

Validation Publication: Lawton M.P. e Brody E.M., Gerontologist, 9:179-186, 1969)

How to Accesshttp://www.eurohex.eu/bibliography/pdf/Lawton_Gerontol_1969-1502121986/Lawton_Gerontol_1969.pdf (open access)

 

4) Behavioral assessment

 

Geriatric Depression Scale (GDS)

Symptoms addressed: Depression

Time to complete: 7-10 min

Number of items: 15 or 30

Completed by: Patient

Validation Publication: Development and validation of geriatric depression screening: a preliminary report, Yesavage JA., et al.,J Psychiatr Res. 1982-1983;17(1):37-49.

How to accesshttps://pdfs.semanticscholar.org/5ab1/91352d3f0b530936ca9acae91245896c8cef.pdf 

 

Beck Anxiety Inventory (BAI)

Symptoms addressed: Anxiety

Time to complete: 10 min

Number of items: 21

Completed by: Patient

Validation Publication: An inventory for measuring clinical anxiety: psychometric properties. Beck AT, et al., J Consult Clin Psychol. 1988 Dec;56(6):893-7

How to accesshttps://www.gphealth.org/media/1087/anxiety.pdf

 

Neuropsychiatric Inventory Questionnaire (NPI)

Symptoms addressed: Behavioural and Psychological Symptoms of Dementia

Time to complete: 15 min

Number of items: 12

Completed by: Health professional/patient´s informant

Validation Publication: The Neuropsychiatric Inventory: comprehensive assessment of psychopathology in dementia., Cummings JL, et al., Neurology. 1994 Dec;44(12):2308-14.

How to Accesshttp://download.lww.com/wolterskluwer_vitalstream_com/permalink/cont/a/cont_21_3_2015_02_26_kaufer_2015-10_sdc2.pdf 

 

Apathy Evaluation Scale

Symptoms addressed: Apathy

Time to complete: 10 min

Number of items: 18

Completed by: Health professional/patient

Validation Publication: Reliability and validity of the Apathy Evaluation Scale., Marin RS., et al., Psychiatry Res. 1991 Aug;38(2):143-62.

How to access: http://www.tbims.org/combi/aes/AES.PDF

 

Zarit Burden Interview (ZBI)

Symptoms addressed: assessment of caregiver´s burden

Time to complete: 10 min

Number of items: 22

Completed by: Health professional/patient´s caregiver

Validation Publication: Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist., Zarit SH., et al., 1980 Dec;20(6):649-55

How to access: https://dementiapathways.ie/_filecache/edd/c3c/89-zarit_burden_interview.pdf 

 

5) Other useful scales

 

Hachinski ischemic score (HIS)

Symptoms addressed: differential diagnosis of dementia (primary degenerative, vascular or multi-infarct, mixed type)

Time to complete: 5 min

Number of items: 13

Completed by: Health professional

Validation Publication: Cerebral blood flow in dementia, Hachinski VC. et al., Arch Neurol. 1975 Sep;32(9):632-7.

How to Access:http://www.strokecenter.org/wp-content/uploads/2011/08/hachinski.pdf 

 

Lewy Body Composite Risk Score (LBCRS)

Symptoms addressed: differential diagnosis of Lewy body dementia (Alzheimer and other types of dementia)

Time to complete: 5 min

Number of items: 10

Completed by: Health professional

Validation Publication: Improving the clinical detection of Lewy body dementia with the Lewy body composite risk score, Galvin JE., Alzheimers Dement (Amst). 2015 Sep 1;1(3):316-324

How to Access:http://med.fau.edu/research/Lewy%20Body%20Composite%20Risk%20Score%20Form%20and%20Instructions.pdf 

 

 

Scores

 

SF-36

Symptoms addressed: Perceived health status

Time to complete: 15 min

Number of items: 36

Completed by: Patient

Validation Publication: Ware and Sherbourne, Medical Care, 1992 Jun; vol. 30(6), pp:473-83

How to Accesshttps://pdfs.semanticscholar.org/06cb/0076e310136d0ca8b56cc8585ec2bf43e029.pdf (open access)

 

Hachinski ischemic score (HIS)

Symptoms addressed: differential diagnosis of dementia (primary degenerative, vascular or multi-infarct, mixed type)

Time to complete: 5 min

Number of items: 13

Completed by: Healthprofessional

Formal qualification necessary: no

Validation Publication: Hachinski VC, et al., “Cerebral blood flow in dementia.” Archives of Neurology, 1975; vol. 32 pp:632-637

 

Neuropsychiatric Inventory (NPI)

Symptoms addressed: Behavioural and Psychological Symptoms of Dementia

Time to complete: 15 min

Number of items: 12

Completed by: Healthprofessional

Formal qualification necessary: no

Validation Publication: Cummings JL, et al.  Neurology 1994; vol. 44, pp:2308-2314

How to Accesshttps://pdfs.semanticscholar.org/23cb/103e7a4566ec4694761e278199a7a4f290a1.pdf (open access)

 

State – Trait Anxiety Inventory (S.T.A.I. Y-1)

Symptoms addressed: State Anxiety

Time to complete: 10 min

Number of items: 20

Validation Publication: Spielberger, Gorsuch & Lushene, 1970

How to Accesshttps://onlinelibrary.wiley.com/doi/pdf/10.1002/9780470479216.corpsy0943 (open access)

Scales

 

Engel Epilepsy Surgery Outcome Scale

Symptoms addressed: Outcome

Time to complete: 15 min

Number of items: 4

Completed by: Healthprofessional

Validation Publication: Engel, Jerome (1993). Surgical Treatment of the Epilepsies. Lippincott Williams & Wilkins. ISBN 0-88167-988-7.

Open access

Recommended by: ILAE/EAN

 

Standardized battery for testing patients during and after seizures in EMUs

Symptoms addressed: Seizure

Time to complete: 30 min

Completed by: Healthprofessional

Validation Publication: Beniczky. Testing patients during seizures: A European consensus procedure developed by a joint taskforce of the ILAE - Commission on European Affairs and the European Epilepsy Monitoring Unit Association.Epilepsia. 2016 Sep;57(9):1363-8

Open access

Recommended by: ILAE/EAN

 

ILAE classifications of postoperative seizure outcome

Symptoms addressed: Outcome

Time to complete: 10 min

Number of items: 7

Completed by: Healthprofessional

Validation Publication: Wieser, W.T. ILAE Commission Report. Proposal for a new classification of outcome with respect to epileptic seizures following epilepsy surgery. Epilepsia, 42 (2001), pp. 282-286

Open access

Recommended by: ILAE/ EAN

 

Status Epilepticus Severity Score (STESS)

Symptoms addressed: Outcome

Time to complete: 5 min

Number of items: 9

Completed by: Healthprofessional

Formal qualification necessary: yes

Validation Publication: Rossetti AO. EB. Status Epilepticus Severity Score (STESS): a tool to orient early treatment EB. Status Epilepticus Severity Score (STESS): a tool to orient early treatment strategy. J Neurol. 2008 Oct;255(10):1561-6.

Open access

Recommended by: ILAE/ EAN

 

Epidemiology-based mortality score in status epilepticus (EMSE)

Symptoms addressed: Outcome

Time to complete: 10 min

Completed by: Healthprofessional

Validation Publication: Leitinger M. Epidemiology-based mortality score in status epilepticus (EMSE). Neurocrit Care. 2015 Apr;22(2):273-82.

Open Access

Recommended by: ILAE/ EAN

 

Encephalitis Nonconvulsive Status Epilepticus Diazepam Resistence Imaging Tracheal Intubation (END-IT) score

Symptoms addressed: Outcome

Time to complete: 10 min

Number of items: 5

Completed by: Healthprofessional

Validation Publication: Gao Q. Prediction of functional outcome in patients with convulsive status epilepticus: the END‐IT score. Crit Care. 2016;20:46.

Open access

Recommended by: ILAE/ EAN

 

Scores

 

Seizure Severity Questionaire

Symptoms addressed: Seizure

Time to complete: 10-15 min

Number of items: 22

Completed by: Healthprofessional and patient

Validation Publication: Cramer JA. Development of a new seizure severity questionnaire: initial reliability and validity testing. Epilepsy Res. 2002 Feb;48(3):187-97.

No open access

Recommended by: ILAE/ EAN

 

QUALITY OF LIFE IN EPILEPSY - QOLIE-31P

Symptoms addressed: QoL

Time to complete: 15-30 min

Number of items: 40

Completed by: patient

Validation Publication: Cramer JA, Van Hammée G; N132 Study Group. Maintenance of improvement in health-related quality of life during long-term treatment with levetiracetam. Epilepsy Behav. 2003 Apr;4(2):118-23.

No open access

Recommended by: ILAE/ EAN

 

The Personal Impact of Epilepsy Scale (PIES).

Symptoms addressed: Impact of disase

Time to complete: 15-30 min

Number of items: 25

Completed by: Patient

Validation Publication: Fisher RS. The Personal Impact of Epilepsy Scale (PIES). Epilepsy Behav. 2015 Jan;42:140-6.

No open access

Recommended by: ILAE/ EAN

 

The Neurological Disorders Depression Inventory for Epilepsy (NDDI-E)

Symptoms addressed: Depression

Time to complete: 5 min

Number of items: 6

Completed by: Patient

Validation Publication: Gilliam FG, Rapid detection of major depression in epilepsy: a multicentre study. Lancet Neurol. 2006 May;5(5):399-405.

No open access

Recommended by: ILAE/ EAN

 

Liverpool adverse event profile

Symptoms addressed: Adverse effects

Time to complete: 15 min

Number of items: 19

Completed by: Healthprofessional and patient

Validation Publication: Baker GA. Initial development, reliability, and validityof a patient-based adverse events scale. Epilepsia 1994;35:80

Open access

Recommended by: ILAE/ EAN

Scores

 

MIDAS

Symptoms addressed: Disability in migraine

Time to complete: 3 min

Number of items: 5

Completed by: patient

Validation Publication: Stewart WF et al. Reliability of the migraine disability assessment score in a population-based sample of headache sufferers. Cephalalgia 1999; 19: 107-14

How to Access: https://onlinelibrary.wiley.com/doi/abs/10.1046/j.1468-2982.1999.019002107.x (open access)

 

HIT-6

Symptoms addressed: Headache impact

Time to complete: 4 min

Number of items: 6

Completed by: patient

Validation Publication: Kosinski M et al. A six-item short-form survey for measuring headache impact: the HIT-6. Qual Life Res 2003; 12: 963-74.

How to Access: https://www.researchgate.net/publication/8980747_A_six-item_short-form_survey_for_measuring_headache_impact_The_HIT-6 (open access)

 

Cluster Headache Quality of life scale

Symptoms addressed: QoL specific for cluster headache

Time to complete: 10 min

Number of items: 28

Completed by: patient

Validation Publication: Abu Bakar N et al. The development and validation of the Cluster Headache Quality of life scale (CHQ). J Headache Pain 2016; 17: 79.

How to Access: https://pdfs.semanticscholar.org/b486/a29d0dd05dea3844c5448270822e753e606c.pdf 

 

HeadApp

Symptoms addressed: Headache impact

Completed by: patient

How to Access: https://www.headapp.com/en/computer-based-cognitive-rehabilitation-therapy/ (open access)

 

Migraine Buddy

Symptoms addressed: Migraine

Completed by: patient

How to Access: https://migrainebuddy.com/ (open access)

 

HURT

Symptoms addressed: Headache treatment

Time to complete: 5 min

Completed by: patient

Validation Publication: Westergaard ML et al. The Headache Under-Response to Treatment (HURT) Questionnaire: assessment of utility in headache specialist care. Cephalalgia 2013; 33: 245-255

How to Access: https://www.l-t-b.org/assets/43/4C3FEA0E-A757-4D10-977FFBA6E5AE721D_document/HURT_utility.pdf (open access)

Scores

 

Addenbrooke's Cognitive Examination - III

Area Covered: Cognitive assessment

Symptoms addressed: cognitive

Time to complete:15-20 minutes

Number of items: 100

Completed by: patient

Formal qualification necessary? No

Link to training resource: https://sydney.edu.au/brain-mind/resources-for-clinicians/dementia-test.html

Open access: yes

Validation publication: https://www.ncbi.nlm.nih.gov/pubme/?term=Validation+of+the+Addenbrooke%27s+Cognitive+Examination+III+i

Languages: English, Arabic, Chinese, Estonian, German, Greek, Gujarati, Hebrew, Hindi,Hungaria, Italian, Japanese, Polish, Spanish, Tamil, Ukranian, Urdu

Recommended by: Alzheimer's Society, NICE

 

Behavioural Inattention Test

Area Covered: Neglect symptom diagnosis and severity

Symptoms addressed: neglect

Time to complete: 40 minutes

Number of items: 15

Completed by: patient

Formal qualification necessary? No

Link to training resource: https://www.pearsonclinical.co.uk/Psychology/AdultCognitionNeuropsychologyandLanguage/AdultAttentionExecutiveFunction/BehaviouralInattentionTest https://www.pearsonclinical.co.uk/Psychology/AdultCognitionNeuropsychologyandLanguage/AdultAttentionExecutiveFunction/BehaviouralInattentionTest(BIT)/BehaviouralInattentionTest(BIT).aspx

Open access: yes

Validation publication: https://www.ncbi.nlm.nih.gov/pubmed/2056321

Languages: This is a suite of visuospatial tasks which does not rely on translation to different languages

 

Visual Object and Space Perception Battery (VOSP)

Area Covered: Visual object and spatial deficits diagnosis

Symptoms addressed: Visual agnosia and visuospatial deficits

Time to complete: 30 minutes

Number of items: 8

Completed by: patient

Formal qualification necessary? No

Link to training resource: https://www.pearsonclinical.co.uk/Psychology/AdultCognitionNeuropsychologyandLanguage/AdultPerceptionandVisuomotorAbilities/VisualObjectandSpacePerceptionBattery(VOSP)/VisualObjectandSpacePerceptionBattery(VOSP).aspx

Open access: yes

Validation publication: https://www.ncbi.nlm.nih.gov/pubmed/23874610

Languages: This is a suite of visual tasks which does not rely on translation to different languages

 

Goldenberg imitation tests

Area Covered: Limb apraxia severity

Symptoms addressed: Limb apraxia

Time to complete: 5 minutes

Number of items: 20

Completed by: patient

Formal qualification necessary? No

Link to training resource: https://www.ncbi.nlm.nih.gov/pubmed/8708686

Open access: no

Validation publication: https://www.ncbi.nlm.nih.gov/pubmed/8708686

Language: This is a test of gesture imitation and does not rely on translation to different languages

 

Multilingual Aphasia Examination

Area Covered: Language

Symptoms addressed: Aphasia

Time to complete: 30 minutes

Number of items: 11 subtests

Completed by: patient

Formal qualification necessary? yes

Link to training resource: https://www.parinc.com/Products/Pkey/222

Open access: no

 

Screening for Aphasia in Neurodegeneration (SAND)

Area Covered: Language

Symptoms addressed: Primary Progressive Aphasia

Time to complete: 20 minutes

Number of items: 9 subtests

Completed by: patient

Formal qualification necessary? no

Link to training resource: https://link.springer.com/article/10.1007/s10072-017-3001-y

Open access: no

 

Cambridge Semantic Memory Test

Area Covered: Semantic memory

Symptoms addressed: Semantic amnesia

Time to complete: 30 minutes

Number of items: 7 subtests

Completed by: patient

Formal qualification necessary? no

Link to training resource: https://www.tandfonline.com/doi/full/10.1080/13554790903405693

Open access: no

 

Boston Naming Test

Area Covered: Language

Symptoms addressed: Anomia, paraphasia

Time to complete: 10 minutes

Number of items: 60

Completed by: patient

Formal qualification necessary? no

Link to training resource: http://aphasiology.pitt.edu/69/

Open access: no

 

Wisconsin Card Sorting Test

Area Covered: Executive function

Symptoms addressed: Abstract thinking, reasoning flexibility

Time to complete: 30 minutes

Number of items: 64

Completed by: patient

Formal qualification necessary? no

Link to training resource: https://www.parinc.com/products/pkey/479

Open access: no

Clock-drawing test

Area Covered: Visuoconstructive

Symptoms addressed: Visuo-construcitve and executive functions

Time to complete: 5 minutes

Number of items: 1

Completed by: patient

Formal qualification necessary? no

Open access: no

 

Reading the Mind in the Eyes Test

Area Covered: Theory of Mind

Symptoms addressed: Emotions perception

Time to complete: 20 minutes

Number of items: 36

Completed by: patient

Formal qualification necessary? no

Link to training resource: https://www.autismresearchcentre.com/arc_tests/

Open access: no

 

Montreal Cognitive Assessment (MoCA)

Area Covered: Cognitive assessment

Symptoms addressed: Cognitive

Time to complete: 10 minutes

Number of items: 30

Completed by: patient

Formal qualification necessary? no

Link to training resource: https://www.mocatest.org/

Open access: yes

Validation publication: https://www.ncbi.nlm.nih.gov/pubmed/15817019

Languages: available in nearly 100 languages

Recommended by: NIH, CSC

Scales

 

Non-Motor Symptoms Scale (NMSS) 

Symptoms addressed: Non-motor symptoms of PD

Time to complete: 15 min

Number of items: 30

Completed by: Healthprofessional

Validation Publication: Chaudhuri KR et al. The metric properties of a novel non-motor symptoms scale for Parkinson's disease:Results from an international pilot study. Mov Disord. 2007;22(13):1901-11.

How to Accesshttp://www.movementdisorders.org/MDS-Files1/PDFs/Rating-Scales/NMSS30itemsrevised.pdf (open access)

Recommended by: MDS

 

Unified Dystonia Rating Scale (UDRS) 

Symptoms addressed: Dystonia

Time to complete: 10 min

Number of items: 10

Completed by: Healthprofessional

Validation Publication: Comella CL, et al. Rating scales for dystonia: a multicenter assessment. Mov Disord. 2003;18(3):303-12.

How to Access: http://www.movementdisorders.org/MDS-Files1/PDFs/Rating-Scales/scale_UDRS.pdf (open access)

Recommended by: MDS

 

Fahn-Tolosa-Marin Tremor Rating scale

Symptoms addressed: Tremor, functional dysability

Time to complete: 10 min

Number of items: 21

Completed by: Healthprofessional

Validation Publication: This scale was pubished in the book "Jankovic J, Tolosa E, editors. Parkinson’s Disease and Movement Disorders. 2nd ed. Baltimore: Williams & Wilkins; 1993. p. 225-34".

How to Access: https://www.researchgate.net/profile/Eduard_Tolosa/publication/307538277_Clinical_Rating_Scale_for_Tremor/links/5832e79508ae004f74c57ae1/Clinical-Rating-Scale-for-Tremor.pdf (open access)

Recommended by: MDS

 

Unified Multiple System Atrophy Rating Scale (UMSARS) 

Symptoms addressed: Historical review, motor symptoms, autonomic symptoms, dysability

Time to complete: 20 min

Number of items: 35

Completed by: Healthprofessional

Validation Publication: Wenning GK, et al. Development and validation of the Unified Multiple System Atrophy Rating Scale (UMSARS). Mov Disord. 2004 Dec;19(12):1391-402. 

How to Access: http://www.movementdisorders.org/MDS-Files1/PDFs/MDS-UPDRS-Rating-Scales/scale_UMSARS.pdf (open access)

Recommended by: MDS

 

Unified Parkinson's Disease Rating Scale (MDS-UPDRS) 

Symptoms addressed: Non-motor symptoms, motor symptoms, motor complications in PD

Time to complete: 55 min

Number of items: 72

Completed by: Healthprofessional and patient

Validation Publication: Goetz CG et al. Movement Disorder Society-sponsored revision of the Unified Parkinson's Disease Rating Scale (MDS-UPDRS): scale presentation and clinimetric testing results. Mov Disord. 2008;23(15):2129-70.

How to Access: http://www.movementdisorders.org/MDS-Files1/PDFs/Rating-Scales/MDS-UPDRS_English_FINAL.pdf  (open access)

Recommended by: MDS

 

Fahn-Marsden dystonia rating scale

Symptoms addressed: Dystonia

Time to complete: 15 min

Number of items: 10

Completed by: Healthprofessional

Formal qualification necessary: yes

Validation Publication: Burke RE et al. Validity and reliability of a rating scale for the primary torsion dystonias. Neurology. 1985;35(1):73-7.

How to Access: http://www.movementdisorders.org/MDS-Files1/PDFs/Rating-Scales/dystonia.pdf (open access)

 

Rating Scale for Psychogenic Movement Disorders

Symptoms addressed: Phenomena, functions in psychogenic movement disorders

Time to complete: 15 min

Number of items: 26

Completed by: Healthprofessional

Validation Publication: Hinson VK, et al.  Rating scale for psychogenic movement disorders: scale development and clinimetric testing. Mov Disord. 2005;20(12):1592-7.

How to Access: http://www.movementdisorders.org/MDS-Files1/PDFs/MDS-UPDRS-Rating-Scales/scale_PMD.pdf (open access)

Recommended by: MDS

 

Unified Huntington's Disease Rating Scale (UHDRS)

Symptoms addressed: Huntington's disease

Time to complete: 30 min

Number of items: 59

Completed by: Healthprofessional

Validation Publication: Huntington Study Group. Unified Huntington's Disease Rating Scale: reliability and consistency.  Mov Disord. 1996 Mar;11(2):136-42

How to Access: http://www.movementdisorders.org/MDS-Files1/PDFs/Rating-Scales/uhdrs.pdf (open access)

Recommended by: MDS

 

Scores

 

Quality of Life Essential Tremor Questionnaire 

Symptoms addressed: Quality of life in essential tremor

Time to complete: NA

Number of items: 13+30

Completed by: Patient

Validation Publication: Tröster AI, et al. Quality of life in Essential Tremor Questionnaire (QUEST): development and initial validation. Parkinsonism Relat Disord. 2005;11(6):367-73.

How to Access: http://www.movementdisorders.org/MDS-Files1/PDFs/MDS-UPDRS-Rating-Scales/QUEST.pdf (open access)

Recommended by: MDS

 

PDQ-39

Symptoms addressed: Quality of life in PD

Time to complete: NA

Number of items: 39

Completed by: Patient

Validation Publication: Jenkinson C, et al. The Parkinson's Disease Questionnaire (PDQ-39): development and validation of a Parkinson's disease summary index score. Age Ageing. 1997 Sep;26(5):353-7.

How to Access: https://process.innovation.ox.ac.uk/p/pdq-39/stage/1/the-parkinsons-disease-questionnaire-the-39-item-version.aspx  (no open access)

Recommended by: University of Oxford

 

Unified Dyskinesia Rating Scale (UDysRS) 

Symptoms addressed: Dyskinesia in PD

Time to complete: 15 min

Number of items: 26

Completed by: Healthprofessional and patient

Validation Publication: Goetz CG, et al. Which dyskinesia scale best detects treatment response? Mov Disord. 2013;28(3):341-6.

How to Access: http://www.movementdisorders.org/MDS-Files1/PDFs/UDysRS_English_FINAL.pdf (open access)

Recommended by: MDS

Scores

 

STROBE (cohort studies)

Area covered: Methodological quality of study designs

Symptoms addressed: Items to included in cohort studies

Time to complete: 30min

Number of items: 22

Completed by: Healthprofessional

Formal qualification necessary: no

How to Accesshttp://www.strobe-statement.org/index.php?id=available-checklists (open access)

 

STROBE (case-control studies)

Area covered: Methodological quality of study designs

Symptoms addressed: Items to include in case-control studies

Time to complete: 30 min

Number of items: 22

Completed by: Healthprofessional

Formal qualification necessary: no

How to Access: http://www.strobe-statement.org/index.php?id=available-checklists (open Access)

 

STROBE (cross-sectional studies)

Area covered: Methodological quality of study designs

Symptoms addressed: Items to included in cross-sectional studies

Time to complete: 30 min

Number of items: 22

Completed by: Healthprofessional

Formal qualification necessary: yno

How to Access: http://www.strobe-statement.org/index.php?id=available-checklists (open access)

 

AGREE

Area covered: Methodological quality of guidelines

Symptoms addressed: Objectives, development & applicability

Time to complete: 60 min

Number of items: 23

Completed by: Healthprofessional

Formal qualification necessary: yes

How to Access: http://www.agreetrust.org/wp-content/uploads/2013/10/AGREE-II-Users-Manual-and-23-item-Instrument_2009_UPDATE_2013.pdf (open access)

 

CONSORT

Area covered: Methodological quality of clinical trials

Symptoms addressed: Items to included in randomized clinical trials

Time to complete: 30 min

Number of items: 25

Completed by: Healthprofessional

Formal qualification necessary: no

How to Access: www.consort-statement.org/Media/Default/Downloads/CONSORT%202010%20Checklist.doc (open access)

 

STROND

Area covered: Methodological quality of incidence & prevalence studies

Symptoms addressed: Items to include in incidence & prevalence studies

Time to complete: 30 min

Number of items: 15

Completed by: Healthprofessional

Formal qualification necessary: yes

How to Access: http://www.neurology.org/site/misc/strondchecklist.pdf (open access)

 

SF-36

Area covered: Quality of life

Symptoms addressed: Quality of life (generic)

Time to complete: 30 min

Number of items: 36

Completed by: Healthprofessional

Formal qualification necessary: no

How to Access: http://www.rand.org/health/surveys_tools/mos/36-item-short-form/survey-instrument.html (open access)

Recommended by: EAN

 

EQ-5D-3L

Area covered: Quality of life

Symptoms addressed: Quality of life (generic)

Time to complete: 5 min

Number of items: 5

Completed by: Patient

Formal qualification necessary: no

How to Access: http://www.euroqol.org/eq-5d-products/eq-5d-3l/self-complete-version-on-laptopdesktop-computers.html (open access)

Recommended by: EAN

 

Critical Reading of Scientific Literature Observational Studies

Area covered: Methodological quality of study designs

Symptoms addressed: Items to evaluate in Observational Studies

Time to complete: 30 min

Number of items: 17

Completed by: Healthprofessional

Formal qualification necessary: no

 

The COSMIN checklist

Area covered: Methodological quality of study designs

Symptoms addressed: Quality of studies

Time to complete: NA

Number of items: 4 steps

Completed by: Healthprofessional

Formal qualification necessary: yes

How to Access: www.cosmin.nlwww.emgo.nl

Scales

 

ICARS (International Cooperative Ataxia Rating Scale)

Area covered: cerebellar ataxia

Symptoms addressed: postural, gait, limb ataxia, dysarthria, oculomotor disturbances

Time to complete: 20-30 minutes

Number of items: 19 (4 subscales, max score 100)

Completed by:  physician

Formal qualification necessary: no

Validation Publications:

1: Schmitz-Hübsch T, et al. Reliability and validity of the International Cooperative Ataxia

Rating Scale: a study in 156 spinocerebellar ataxia patients. Mov Disord. 2006;21:699-704

2. Storey E, et al. Inter-rater reliability of the International Cooperative Ataxia Rating Scale (ICARS). Mov Disord. 2004;19:190-2 (For Friedreich ataxia)

How to access: https://www.augusta.edu/alliedhealth/pt/documents/icarsform.pdf

 

SARA (Scale for the assessment and rating for ataxia)

Area covered: cerebellar ataxia

Symptoms addressed: gait, stance, sitting, speech, finger-chase test, nose-finger test, fast alternating movements, heel-to-shin test 

Time to complete: 10 minutes

Number of items: 8 (max score 40)

Completed by:  physician

Formal qualification necessary: no

Validation Publications:

1: Schmitz-Hübsch T, et al. Scale for the assessment and rating of ataxia: development of a new clinical scale. Neurology. 2006;13;66:1717-20 (For Spinocerebellar ataxias)

2. Bürk K, et al. Comparison of three clinical rating scales in Friedreich ataxia (FRDA). Mov Disord. 2009;15;24:1779-84 (For Friedreich ataxia)

How to access: http://www.ataxia-study-group.net/html/about/ataxiascales/sara/SARA.pdf

Scales

 

EDSS (Expanded Disability Status Scale)

Symptoms addressed: Severity of symptoms in MS

Time to complete: 15 minutes

Completed by:  physician

Validation Publications:

John F. Kurtzke: Rating neurologic impairment in multiple sclerosis: an expanded disability status scale (EDSS). Neurology (1983) vol. 33 (11) pp. 1444–1452. PMID 6685237

How to access: https://www.neurostatus.net/

 

MSFC

Symptoms addressed: Severity of symptoms in MS

Completed by:  physician

Validation Publications:

Fischer, J. S., Rudick, R. A., Cutter, G. R., Reingold, S. C. for the National MS Society Clinical Outcomes Assessment Task Force. The multiple sclerosis functional composite measure 

How to access: https://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/10-2-3-31-MSFC_Manual_and_Forms.pdf

 

MSSS

Symptoms addressed: Severity of symptoms in MS

Completed by:  physician

Validation Publications:

Roxburgh RH et al. Multiple Sclerosis Severity Score: using disability and disease duration to rate disease severity. Neurology. 2005 Apr 12;64(7):1144-51

How to access: 10.1212/01.WNL.0000156155.19270.F8

 

SDMT

Symptoms addressed: cognition in MS

Completed by:  physician

Validation Publications:

Benedict et al. Multiple Sclerosis Outcome Assessments Consortium. Validity of the Symbol Digit Modalities Test as a cognition performance outcome measure for multiple sclerosis. 

 

Besinger Score

Symptoms addressed: Severity of Symptoms of Myasthenia

Time to complete: 15 minutes

Completed by:  physician

Validation Publications:

Besinger UA, Toyka KV, Hömberg M, Heininger K, Hohlfeld R, Fateh-Moghadam A. Myasthenia gravis: long-term correlation of binding and bungarotoxin blocking antibodies against acetylcholine receptors with changes in disease severity. Neurology. 1983 Oct;33(10):1316-21; Tindall RS, Rollins JA, Phillips JT, Greenlee RG, Wells L, Belendiuk G. Preliminary results of a double-blind, randomized, placebo-controlled trial of cyclosporine in myasthenia gravis. N Engl J Med. 1987 Mar 19;316(12):719-24 Tindall RS, Phillips JT, Rollins JA, Wells L, Hall K. A clinical therapeutic trial of cyclosporine in myasthenia gravis. Ann N Y Acad Sci. 1993 Jun 21;681:539-51 Barohn RJ, McIntire D, Herbelin L, Wolfe GI, Nations S, Bryan WW. Reliability testing of the quantitative myasthenia gravis score. Ann N Y Acad Sci. 1998 May 13;841:769-72 

 

Karnofsky Performance Scale Index

Symptoms addressed: assessment tool for functional impairment

Time to complete: below 5 minutes

Completed by:  physician

Validation Publications:

Schag CC, Heinrich RL, Ganz PA. Karnofsky performance status revisited: Reliability, validity, and guidelines. J Clin Oncology. 1984; 2:187-193

How to access: http://www.npcrc.org/files/news/karnofsky_performance_scale.pdf

 

Clinical Assessment Scale in Autoimmune Encephalitis (CASE)

Completed by:  physician

Validation Publications:

Lim et al. Development of the clinical assessment scale in autoimmune encephalitis. Ann Neurol. 2019 Mar;85(3):352-358. doi: 10.1002/ana.25421

How to access: 10.1002/ana.25421

 

APE score

Symptoms addressed: for predicting an autoimmune origin of epilepsy 

Completed by:  physician

Validation Publications:

Dubey D, Alqallaf A, Hays R, Freeman M, Chen K, Ding K, Agostini M, Vernino S. Neurological Autoantibody Prevalence in Epilepsy of Unknown Etiology. JAMA Neurol. 2017 Apr 1;74(4):397-402

How to access: 10.1001/jamaneurol.2016.5429

 

NEOS score

Symptoms addressed: for predicting functional outcome in NMDAR encephalitis 

Completed by:  physician

Validation Publications:

Balu R, McCracken L, Lancaster E, Graus F, Dalmau J, Titulaer MJ. A score that predicts 1-year functional status in patients with anti-NMDA receptor encephalitis. Neurology. 2019 Jan 15;92(3):e244-e252. 

How to access: 10.1212/WNL.000000000000

 

DELTA-P score

Symptoms addressed: for predicting functional outcome in NMDAR encephalitis 

Completed by:  physician

Validation Publications:

Balu R, McCracken L, Lancaster E, Graus F, Dalmau J, Titulaer MJ. A score that predicts 1-year functional status in patients with anti-NMDA receptor encephalitis. Neurology. 2019 Jan 15;92(3):e244-e252. 

How to access: 10.1212/WNL.000000000000

 

Modified Ashworth Scale

Symptoms addressed: spasticity

Completed by:  physician

Validation Publications:

https://www.sralab.org/rehabilitation-measures/ashworth-scale-modified-ashworth-scale

How to access: https://www.sralab.org/rehabilitation-measures/ashworth-scale-modified-ashworth-scale

 

Scores

 

CTCAE score

Symptoms addressed: criteria for grading immune checkpoint inhibitors (ICI)-related toxicities, including neurological toxicities 

Completed by:  physician

How to access: https://ctep.cancer.gov/protocolDevelopment/electronic_applications/docs/CTCAE_v5_Quick_Reference_8.5x11.pdf

 

 

Questionnaires

 

IADL (instrumental activities of daily living)

Symptoms addressed: activity of daily living

Time to complete: 5 minutes

Completed by:  physician

Validation Publications:

Schag CC, Heinrich RL, Ganz PA. Karnofsky performance status revisited: Reliability, validity, and guidelines. J Clin Oncology. 1984; 2:187-193

How to access: http://www.npcrc.org/files/news/karnofsky_performance_scale.pdf

 

Chronic Acquired Polyneuropathy Patient Reported Index (CAPPRI) 

Symptoms addressed: CIDP symptoms

Completed by:  patient

Validation Publications:

Bjelica B, et al J Peripher Nerv Syst. 2019 Sep;24(3):247-252

How to access: doi: 10.1111/jns.12329

Scales

 

International Classification of Functioning, Disability and Health

Area covered: Symptom severity

Symptoms addressed: functioning and disability

Time to complete: up to 30 minutes

Number of items: 4 components and 30 domains

Completed by: Health professional

Validation publication: http://apps.who.int/iris/bitstream/handle/10665/42407/9241545429.pdf;jsessionid=04CB0D298A8F31DA30B2AF7B2AB8FE83?sequence=1

How to Access: https://www.cdc.gov/nchs/data/icd/icfoverview_finalforwho10sept.pdf (open access)

 

Action Research Reaction Test (ARAT)

Area covered: Symptom severity

Symptoms addressed: Activities of Daily Living, coordination, dexterity, upper limb function

Time to complete: 6-30 min

Number of items: 19

Completed by: Healthprofessional

Validation Publication: https://www.ncbi.nlm.nih.gov/pubmed/7333761

How to Accesshttp://www.strokecenter.org/wp-content/uploads/2011/08/action_research_arm_test.pdf (open access)

 

Revised-Amyotrophic Lateral Sclerosis Functional Rating Scale (R-ALFRS)

Area covered: Symptom severity

Symptoms addressed: Functional impairement

Time to complete: 6-30 min

Number of items: 12

Completed by: Healthprofessional

Validation publication: https://www.ncbi.nlm.nih.gov/pubmed/8639063

How to Access: https://www.outcomes-umassmed.org/als/alsscale.aspx (open access)

 

NIH Stroke Scale

Area covered: Symptom severity

Symptoms addressed: Aphasia, motor deficit, vision, perception, dysarthria, cerebellar function, cognition

Time to complete: 5 min

Number of items: 15

Completed by: Healthprofessional

Formal qualification necessary: yes

Validation Publication: https://www.ncbi.nlm.nih.gov/pubmed/2749846

How to Access:https://www.stroke.nih.gov/documents/NIH_Stroke_Scale_508C.pdf (open access)

 

Modified Barthel ADL Index

Area covered: Impression of the disease

Symptoms addressed: Activities of daily living, gait, functional mobility

Time to complete: 5 min

Number of items: 10

Completed by: Healthprofessional

Validation Publication: https://www.ncbi.nlm.nih.gov/pubmed/3403500

How to Access: https://www.albertahealthservices.ca/assets/about/scn/ahs-scn-bjh-hf-barthel-index-of-adls.pdf (open access)

 

Berg Balance Scale(BBS)

Area covered: Symptom severity

Symptoms addressed: Balace, functional mobility

Time to complete: 15-20 min

Number of items: 14

Completed by: Healthprofessional

Validation Publication: https://www.ncbi.nlm.nih.gov/pubmed/1468055

How to Access: http://www.strokecenter.org/wp-content/uploads/2011/08/berg.pdf (open access)

 

Fugl-Meyer Assessment of Motor Recovery(FMA)

Area covered: Symptom severity

Symptoms addressed: Activities of daily living, pain, functional mobility

Time to complete: 6-30 min

Number of items: 226

Completed by: Healthprofessional

Validation Publication: https://www.ncbi.nlm.nih.gov/pubmed/3686581

How to Access: https://neurophys.gu.se/english/departments/clinical_neuroscience_and_rehabilitation/rehabilitation-medicine/fugl-meyer (open access)

 

Glasgow Coma Scale Extended(GOSE)

Area covered: Impression of the disease/QoL

Symptoms addressed: Activities of daily living, global outcome

Time to complete: 6-30 min

Number of items: 8

Completed by: Healthprofessional

Validation Publication: Wilson JTL, Pettigrew LEL, Teasdale GM. Structured interviews for the Glasgow Outcome Scale and the Extended Glasgow Outcome Scale: Guidelines for their use. Journal of Neurotrauma 1998;15:573-585.

How to Access: http://tbims.org/combi/gose (open access)

 

Multiple Sclerosis Functional composite(MSCF)

Area covered: Symptom severity

Symptoms addressed: Cognition, gait,  upper extremity function

Time to complete: 10-20 min

Number of items: 3

Completed by: Healthprofessional

Validation: https://www.ncbi.nlm.nih.gov/pubmed/10987899 

How to Access: http://main.nationalmssociety.org/docs/HOM/MSFC_Manual_and_Forms.pdf (no open access)

 

Scores

 

Hospital Anxiety and Depression Scale(HADS)

Area covered: Impression of the disease

Symptoms addressed: Depression, mental health

Time to complete: 5 min

Number of items: 14

Completed by: Healthprofessional

Validation Publication: https://www.ncbi.nlm.nih.gov/pubmed/6880820

How to Access: Available for purchase at MAPI Research Trust (no open access)

 

Movement Disorder Society sponsored Unified Parkinson’s Disease Rating Scale Revision (MDS-UPDRS)

Area covered: Symptom severity

Symptoms addressed: Activities of Daily Living, behavior cognition, functional obility, gait, ncontinence, life participation pain;

Time to complete: 6-30 min

Number of items: 4

Completed by: Healthprofessional

Validation Publication: https://experts.umich.edu/en/publications/movement-disorder-society-sponsored-revision-of-the-unified-parki 

How to Access: http://www.movementdisorders.org/MDS-Files1/PDFs/Rating-Scales/NewUPDRS7308final.pdf (no open access)

Scales

 

ALFFRS-R

Area covered: Disease severity

Symptoms addressed: Symptoms of ALS

Time to complete: 5 min

Number of items: 14

Completed by: Healthprofessional

Formal qualification necessary: no

Validation Publication:

Cedarbaum J et al Journal of the Neurological Sciences 169 (1999) 13–21

How to Access: online

 

IPOS-NEURO

Area covered: Symptom burden

Symptoms addressed: Symptoms and qaulity of life

Time to complete: 10 min

Number of items: 8

Completed by: Healthprofessional or Patient

Formal qualification necessary: no

Validation Publication:

Gao W, Crosby V, Wilcock A, Burman R, Silber E, Hepgul N, et al. (2016) Psychometric Properties of a Generic, Patient-Centred Palliative Care Outcome Measure of Symptom Burden for People with Progressive Long Term Neurological Conditions. PLoS ONE 11(10): e0165379. doi:10.1371/journal.pone.0165379 E

How to Access: online

 

Seiqol

Area covered: Quality of Life

Symptoms addressed: Quality of Life

Time to complete: 20 min

Number of items: 5

Completed by: Healthprofessional

Formal qualification necessary: no

Validation Publication:

Hickey AM et al A new short form individual quality of life measure (SEIQoL-DW): application in a cohort of individuals with HIV/AIDS
BMJ 1996; 313 doi: doi.org/10.1136/bmj.313.7048.29 (Published 06 July 1996)
Cite this as: BMJ 1996;313:29

How to Access: online

Scales

Epworth Sleepiness Scale

Area covered: Severity of sleepiness

Symptoms addressed: Daytime sleepiness

Time to complete: 5 minutes

Number of items: 8

Completed by: Patient and/or healthprofessional

Formal qualification necessary: no

Validation Publication: Johns M. W. A new method for measuring daytime sleepiness: the Epworth sleepiness scale. Sleep. 1991;14(6):540–545. 

Open access: yes

Languages: English, Arabic, French

How to Access: https://www.sleepapnea.org/wp-content/uploads/2017/02/berlin-questionnaire.pdf

Recommended by: EAN

 

International RLS Rating Scale

Area covered: Risk and severity of Restless legs syndrome (RLS)

Symptoms addressed: Restless legs syndrome symptoms, secondary symptoms caused by RLS

Time to complete: 5 minutes

Number of items: 10

Completed by: Patient and/or healthprofessional

Formal qualification necessary: no

Validation Publication: Walters AS, LeBrocq C, Dhar A, et al. Validation of the International Restless Legs Syndrome Study Group rating scale for restless legs syndrome. Sleep Med. 2003;4(2):129-130. 

Open access: Yes (for not-funded academic users)

Languages: English, etc.

How to Access: https://eprovide.mapi-trust.org/instruments/international-restless-legs-syndrome-study-group-rating-scale

Recommended by: EAN/IRLSSG

 

Swiss Narcolepsy Scale

Area covered: Risk and severity of narcolepsy

Symptoms addressed: Narcolepsy symptoms (pathological sleepiness, cataplexy)

Time to complete: 4 minutes

Number of items: 5

Completed by: Patient and/or healthprofessional

Formal qualification necessary: no

Validation Publication: Sturzenegger C, Bassetti CL (2004) The clinical spectrum of narcolepsy with cataplexy: a reappraisal. J Sleep Res 13(4):395–406.  

Open access: Yes 

Languages: English

How to Access: https://www.swissnarcolepsyscale.com/

Recommended by: EAN

 

Frontal Lobe Epilepsy and Parasomnias Scale

Area covered: Differentiation between nocturnal epilepsies and parasomnias

Symptoms addressed: Differentation between frontal lobe epilepsy symptoms and parasomnias symptoms

Time to complete: 5 minutes

Number of items: 11

Completed by: Healthprofessional

Formal qualification necessary: no

Validation Publication: Derry CP, Dvey M, Johns M, Kron K, Glencross D, Marini C, Scheffer IE, Berkovic S. (2006b) Distinguishing sleep disorders from seizures: diagnosing bumps in the night. Arch Neurol 63:705–709.

Open access: Yes 

Languages: English, Itlaian

How to Access: https://jamanetwork.com/journals/jamaneurology/fullarticle/791451

Recommended by: EAN

 

Questionnaires

Berlin Sleep Apnea Questionnaire

Area covered: Risk for sleep apnea

Symptoms addressed: Sleep apnea, snoring, secondary symptoms caused by apnea (e.g. daytime sleepiness)

Time to complete: 5 minutes

Number of items: 10

Completed by: Patient and/or healthprofessional

Formal qualification necessary: no

Validation Publication: Netzer NC, Stoohs RA, Netzer CM, Clark K, Strohl KP. Using the Berlin questionnaire to identify patients at risk for the sleep apnea syndrome. Ann Intern Med. 1999;131:485–491.

Open access: yes

Languages: English, Thai, Greek, Persian, Arabic

How to Access: https://www.sleepapnea.org/wp-content/uploads/2017/02/berlin-questionnaire.pdf

Recommended by: EAN

 

Insomnia severity scale

Area covered: Risk for and severity of insomnia

Symptoms addressed: Sleep-onset, midnight or morning insomnia, secondary symptoms caused by insomnia (e.g. daily functioning, anxiety)

Time to complete: 5 minutes

Number of items: 7

Completed by: Patient and/or healthprofessional

Formal qualification necessary: no

Validation Publication: Morin, C.M.  (1993).  Insomnia :  Psychological assessment and management. Guilford Press, New York.

Open access: Yes (for not-funded academic users)

Languages: English, Lithuanian, Italian, Portuguese, German, Korean, etc.

How to Access: https://mapi-trust.org/questionnaires/isi/#description

Recommended by: EAN

 

Innsbruck RBD Inventory 

Area covered: Risk for and severity of REM sleep behaviour disorder (RBD)

Symptoms addressed: REM sleep behaviour disorder symptoms

Time to complete: 5 minutes

Number of items: 9

Completed by: Patient and/or healthprofessional

Formal qualification necessary: no

Validation Publication: Frauscher  B., Ehrmann L., Zamarian L. et al. Validation of the Innsbruck REM sleep behavior disorder inventory. Sleep. 2014 Jan 1; 37(1): 127–136.

Open access: Yes (on a request)

Languages: English, German

How to Access: https://onlinelibrary.wiley.com/doi/full/10.1002/mds.25223

Recommended by: EAN/ MDS

 

Paris Arousal Disorders Severity Scale

Area covered: Risk and severity of NREM parasomnias 

Symptoms addressed: Arousal Disorders (especially NREM sleep parasomnias) symptoms, their impact on daily functioning and quality of life

Time to complete: 8 minutes

Number of items: 23

Completed by: Patient and/or healthprofessional

Formal qualification necessary: no

Validation Publication: Arnulf I., Zhang B.,  Uguccioni G. et al. A Scale for Assessing the Severity of Arousal Disorders. Sleep. 2014 Jan 1; 37(1): 127–136.

Open access: Yes (on a request)

Languages: English, French

How to Access: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3902885/pdf/aasm.37.1.127.pdf

Recommended by: EAN

 

Munich Chronotype Questionnaire

Area covered: Chronotype and risk for circadian rhythm disorders

Symptoms addressed: Sleep-wake-work rhythm, sleep habits, light exposure, substance use, etc.

Time to complete: 20 minutes

Number of items: 45

Completed by: Patient and/or healthprofessional

Formal qualification necessary: no

Validation Publication: Roenneberg, T., Keller, L. K., Fischer, D., Matera, J. L., Vetter, C., & Winnebeck, E. C. (2015). Human activity and rest in situ. Methods Enzymol, 552, 257-283

Open access: Yes (on a request)

Languages: English, German, Japanese, Korean

How to Access: https://www.thewep.org/documentations/mctq

Recommended by: EAN

 

Pittsburgh Sleep Quality Index

Area covered: General evaluation of sleep quality

Symptoms addressed: Subjective sleep quality, sleep disturbances, sleep-wake rhythm, sleep habits.

Time to complete: 20 minutes

Number of items: 10

Completed by: Patient and/or healthprofessional

Formal qualification necessary: no

Validation Publication: Buysse DJ., Reynolds 3rd CF., Monk TH., et al. The Pittsburgh Sleep Quality Index: a new instrument for psychiatric practice and research. Psychiatry Res. 1989 May;28(2):193-213.

Open access: Yes 

Languages: English, German, Portuguese

How to Access: https://www.opapc.com/uploads/documents/PSQI.pdf

Recommended by: EAN

Scales

 

National Institutes of Health Stroke Scale (NIHSS)

Area covered: Symptom severity

Time to complete: 5 min

Number of items: 11

Completed by: Healthprofessional

Link to training resource: www.nihss-english.trainingcampus.net

Validation Publication: Brott T et al, Measurements of acute cerebral infarction: a clinical examination scale. Stroke. 1989;20(7):864-70.

How to Accesshttp://www.strokecenter.org/wp-content/uploads/2011/08/NIH_Stroke_Scale.pdf (open access)

 

Modified Rankin Scale (mRS)

Area covered: Degree of disability

Time to complete: <5 min

Number of items: 1

Completed by: Healthprofessional

Validation publication: Van Swieten J et al, Interobserver agreement for the assessment of handicap in stroke patients. Stroke. 19(5):604–607.

How to Access: http://www.strokecenter.org/wp-content/uploads/2011/08/modified_rankin.pdf (open access)

 

Montreal Cognitive Assessment (MoCa)

Area covered: Cognitive impairment

Time to complete: 10 min

Number of items: 8

Completed by: Healthprofessional

Link to training resource: www.mocatest.org

Validation Publication: Nasreddine ZS, Phillips NA, Bédirian V, Charbonneau S, Whitehead V, Collin I, Cummings JLC, Chertkow H. The Montreal Cognitive Assessment, MoCA: A Brief Screening Tool For Mild Cognitive Impairment. J Am Geriatr Soc 53:695–699, 2005

How to Access: https://www.mocatest.org/wp-content/uploads/2017/01/MoCA-New-Test-8.1-2017-04.pdf (open access)

 

Rapid Arterial Occlusion Evaluation (RACE)

Area covered: Large vessel occlusion screening

Symptoms addressed: Balace, functional mobility

Time to complete: <5 min

Number of items: 5

Completed by: Healthprofessional

Validation Publication: Perez de la Ossa et al, Design and Validation of a Prehospital Stroke Scale to Predict Large Arterial Occlusion. Stroke 2014; 45:87–91

How to Access: www.racescale.org/how-to-use/table/ (open access)

 

ABCD²

Area covered: Stroke recurrence risk after TIA

Time to complete: <5 min

Number of items: 5

Completed by: Healthprofessional

Validation publication: Johnston SC et al, Validation and refinement of scores to predict very early stroke risk after transient ischaemic attack. Lancet. 2007;369(9558):283-92.

How to Access: Original publication, Google (open access)

 

Risk of Paradoxical Embolism Score (RoPE)

Area covered: PFO-related stroke

Time to complete: <5 min

Number of items: 6

Completed by: Healthprofessional

Validation publication: Kent D et al, An index to identify stroke-related vs incidental patent foramen ovale in cryptogenic stroke. Neurology. 2013; 81(7): 619–625. 

How to Access: Original publication, Google (open access)

 

CHA2DS2-VASc score

Area covered: Stroke risk in patients with atrial fibrillation

Time to complete: <5 min

Number of items: 8

Completed by: Healthprofessional

Validation publication: Lip GY et al, "Refining clinical risk stratification for predicting stroke and thromboembolism in atrial fibrillation using a novel risk factor-based approach: the euro heart survey on atrial fibrillation". Chest. 137 (2): 263–72.

How to Access: Original publication, Google (open access)

 

HAS-BLED

Area covered: Risk of major bleeding in antiagulation

Time to complete: <5 min

Number of items: 7

Completed by: Healthprofessional

Validation publication: Pisters R et al, A Novel User-Friendly Score (HAS-BLED) to Assess 1-Year Risk of Major Bleeding in Patients with Atrial Fibrillation. Chest. 138(5):1093–100

How to Access: Original publication, Google (open access)

 

Barthel Index (BI)

Area covered: Impairment in activities of daily living

Time to complete: 5 min

Number of items: 10

Completed by: Healthprofessional

Validation publication: Collin C et al, The Barthel ADL Index: a reliability study. Int Disabil Stud. 1988;10(2):61-3.

How to Access: http://www.strokecenter.org/wp-content/uploads/2011/08/barthel.pdf (open access)

 

Scores

 

The Short Form (36) Health Survey (SF-36)

Area covered: Perceived patient health

Time to complete: 15 min

Number of items: 36

Completed by: Patient

Validation Publication: Ware JE, et al. The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med Care. 1992;30(6):473-83.

How to Access: https://pdfs.semanticscholar.org/06cb/0076e310136d0ca8b56cc8585ec2bf43e029.pdf (open access)