ARCHETYPE Revised Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS-R) (openEHR-EHR-OBSERVATION.alsfrs_r.v0)

ARCHETYPE IDopenEHR-EHR-OBSERVATION.alsfrs_r.v0
ConceptRevised Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS-R)
DescriptionAn assessment score used to stratify severity of amyotrophic lateral sclerosis (ALS), including respiratory function.
UseUse to record the results for each component parameter and the ALSFRS-R score.
PurposeTo record the results for each component parameter and the ALSFRS-R score.
References1. Cedarbaum JM, Stambler N, Malta E, Fuller C, Hilt D, Thurmond B, Nakanishi A. The ALSFRS-R: a revised ALS functional rating scale that incorporates assessments of respiratory function. BDNF ALS Study Group (Phase III). J Neurol Sci. 1999 Oct 31;169(1-2):13-21. doi: 10.1016/s0022-510x(99)00210-5. PMID: 10540002.
2. Kaufmann P, Levy G, Thompson JL, Delbene ML, Battista V, Gordon PH, Rowland LP, Levin B, Mitsumoto H. The ALSFRSr predicts survival time in an ALS clinic population. Neurology. 2005 Jan 11;64(1):38-43. doi: 10.1212/01.WNL.0000148648.38313.64. PMID: 15642901.
3. Kimura F, Fujimura C, Ishida S, Nakajima H, Furutama D, Uehara H, Shinoda K, Sugino M, Hanafusa T. Progression rate of ALSFRS-R at time of diagnosis predicts survival time in ALS. Neurology. 2006 Jan 24;66(2):265-7. doi: 10.1212/01.wnl.0000194316.91908.8a. PMID: 16434671.
4. Cedarbaum JM, Stambler N. Performance of the Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS) in multicenter clinical trials. J Neurol Sci. 1997 Oct;152 Suppl 1:S1-9. doi: 10.1016/s0022-510x(97)00237-2. PMID: 9419047.
Copyright© Cambio CDS, openEHR Foundation
AuthorsAuthor name: Maryam Razavi
Organisation: Cambio CDS
Email: maryam.razavi@cambio.se
Date originally authored: 2021-01-15
Other Details LanguageAuthor name: Maryam Razavi
Organisation: Cambio CDS
Email: maryam.razavi@cambio.se
Date originally authored: 2021-01-15
OtherDetails Language Independent{licence=This work is licensed under the Creative Commons Attribution-ShareAlike 4.0 International License. To view a copy of this license, visit http://creativecommons.org/licenses/by-sa/4.0/., custodian_organisation=openEHR Foundation, references=1. Cedarbaum JM, Stambler N, Malta E, Fuller C, Hilt D, Thurmond B, Nakanishi A. The ALSFRS-R: a revised ALS functional rating scale that incorporates assessments of respiratory function. BDNF ALS Study Group (Phase III). J Neurol Sci. 1999 Oct 31;169(1-2):13-21. doi: 10.1016/s0022-510x(99)00210-5. PMID: 10540002. 2. Kaufmann P, Levy G, Thompson JL, Delbene ML, Battista V, Gordon PH, Rowland LP, Levin B, Mitsumoto H. The ALSFRSr predicts survival time in an ALS clinic population. Neurology. 2005 Jan 11;64(1):38-43. doi: 10.1212/01.WNL.0000148648.38313.64. PMID: 15642901. 3. Kimura F, Fujimura C, Ishida S, Nakajima H, Furutama D, Uehara H, Shinoda K, Sugino M, Hanafusa T. Progression rate of ALSFRS-R at time of diagnosis predicts survival time in ALS. Neurology. 2006 Jan 24;66(2):265-7. doi: 10.1212/01.wnl.0000194316.91908.8a. PMID: 16434671. 4. Cedarbaum JM, Stambler N. Performance of the Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS) in multicenter clinical trials. J Neurol Sci. 1997 Oct;152 Suppl 1:S1-9. doi: 10.1016/s0022-510x(97)00237-2. PMID: 9419047., current_contact=maryam.razavi@cambio.se, original_namespace=org.openehr, original_publisher=openEHR Foundation, custodian_namespace=org.openehr, MD5-CAM-1.0.1=6252F7D6FB4ECFA25DAA824787B404AB, build_uid=b3a9b65e-329a-4a0d-9882-8cb6081d19e8, revision=0.0.1-alpha}
Keywordsamyotrophic, lateral, sclerosis, ALS, respiratory
Lifecyclein_development
UIDd4c2b13c-126a-4a29-b339-92f2af3880dd
Language useden
Citeable Identifier1013.1.5399
Revision Number0.0.1-alpha
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4: Normal [*]
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4: Normal [*]
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2: Not all words are legible [*]
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4: Normal [*]
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  • Yes [*]
  • No [*]
, extendedValues=null], ResourceSimplifiedHierarchyItem [path=/data[at0001]/events[at0002]/data[at0003]/items[at0031], code=at0031, itemType=ELEMENT, level=4, text=Cutting food and handling utensils (patients with gastrostomy), description=*, comment=null, uncommonOntologyItems=null, occurencesFormal=0..1, occurencesText=Optional, cardinalityFormal=null, cardinalityText=null, subCardinalityFormal=null, subCardinalityText=null, dataType=C_DV_ORDINAL, bindings=null, values=0: Unable to perform any aspect of task [*]
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2: Some help needed with closures and fasteners [*]
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4: Normal [*]
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1: Food must be cut by someone but can still feed slowly [*]
2: Can cut most foods although clumsy and slow; some help needed [*]
3: Somewhat slow and clumsy but no help needed [*]
4: Normal [*]
, extendedValues=null], ResourceSimplifiedHierarchyItem [path=/data[at0001]/events[at0002]/data[at0003]/items[at0037], code=at0037, itemType=ELEMENT, level=4, text=Dressing and hygiene, description=*, comment=null, uncommonOntologyItems=null, occurencesFormal=0..1, occurencesText=Optional, cardinalityFormal=null, cardinalityText=null, subCardinalityFormal=null, subCardinalityText=null, dataType=C_DV_ORDINAL, bindings=null, values=0: Total dependence [*]
1: Needs attendant for self-care [*]
2: Intermittent assistance or substitute methods [*]
3: Independent and complete self-care with effort or decreased efficiency [*]
4: Normal function [*]
, extendedValues=null], ResourceSimplifiedHierarchyItem [path=/data[at0001]/events[at0002]/data[at0003]/items[at0043], code=at0043, itemType=ELEMENT, level=4, text=Turning in bed and adjusting bed clothes, description=*, comment=null, uncommonOntologyItems=null, occurencesFormal=0..1, occurencesText=Optional, cardinalityFormal=null, cardinalityText=null, subCardinalityFormal=null, subCardinalityText=null, dataType=C_DV_ORDINAL, bindings=null, values=0: Helpless [*]
1: Can initiate but not turn or adjust sheets alone [*]
2: Can turn alone or adjust sheets but with great difficulty [*]
3: Somewhat slow and clumsy but no help needed [*]
4: Normal [*]
, extendedValues=null], ResourceSimplifiedHierarchyItem [path=/data[at0001]/events[at0002]/data[at0003]/items[at0049], code=at0049, itemType=ELEMENT, level=4, text=Walking, description=*, comment=null, uncommonOntologyItems=null, occurencesFormal=0..1, occurencesText=Optional, cardinalityFormal=null, cardinalityText=null, subCardinalityFormal=null, subCardinalityText=null, dataType=C_DV_ORDINAL, bindings=null, values=0: No purposeful leg movement [*]
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2: Walks with assistance [*]
3: Early ambulation difficulties [*]
4: Normal [*]
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1: Needs assistance [*]
2: Mild unsteadiness or fatigue [*]
3: Slow [*]
4: Normal [*]
, extendedValues=null], ResourceSimplifiedHierarchyItem [path=/data[at0001]/events[at0002]/data[at0003]/items[at0061], code=at0061, itemType=ELEMENT, level=4, text=Dyspnea, description=*, comment=null, uncommonOntologyItems=null, occurencesFormal=0..1, occurencesText=Optional, cardinalityFormal=null, cardinalityText=null, subCardinalityFormal=null, subCardinalityText=null, dataType=C_DV_ORDINAL, bindings=null, values=0: Significant difficulty, considering using mechanical respiratory support [*]
1: Occurs at rest, difficulty breathing when either sitting or lying [*]
2: Occurs with one or more of the following eating, bathing, dressing [*]
3: Occurs when walking [*]
4: None [*]
, extendedValues=null], ResourceSimplifiedHierarchyItem [path=/data[at0001]/events[at0002]/data[at0003]/items[at0067], code=at0067, itemType=ELEMENT, level=4, text=Orthopnea, description=*, comment=null, uncommonOntologyItems=null, occurencesFormal=0..1, occurencesText=Optional, cardinalityFormal=null, cardinalityText=null, subCardinalityFormal=null, subCardinalityText=null, dataType=C_DV_ORDINAL, bindings=null, values=0: Unable to sleep [*]
1: Can only sleep sitting up [*]
2: Needs extra pillows in order to sleep (>2) [*]
3: Some difficulty sleeping at night due to shortness of breath; does not routinely use >2 pillows [*]
4: None [*]
, extendedValues=null], ResourceSimplifiedHierarchyItem [path=/data[at0001]/events[at0002]/data[at0003]/items[at0073], code=at0073, itemType=ELEMENT, level=4, text=Respiratory insufficiency, description=*, comment=null, uncommonOntologyItems=null, occurencesFormal=0..1, occurencesText=Optional, cardinalityFormal=null, cardinalityText=null, subCardinalityFormal=null, subCardinalityText=null, dataType=C_DV_ORDINAL, bindings=null, values=0: Invasive mechanical ventilation by intubation or tracheostomy [*]
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2: Continuous use of BiPAP during the night [*]
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4: None [*]
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4: Normal [*]
, extendedValues=null], ResourceSimplifiedHierarchyItem [path=/data[at0001]/events[at0002]/data[at0003]/items[at0016], code=at0016, itemType=ELEMENT, level=4, text=Swallowing, description=*, comment=null, uncommonOntologyItems=null, occurencesFormal=0..1, occurencesText=Optional, cardinalityFormal=null, cardinalityText=null, subCardinalityFormal=null, subCardinalityText=null, dataType=C_DV_ORDINAL, bindings=null, values=0: Nothing by mouth; exclusively parenteral or enteral feeding [*]
1: Needs supplemental tube feedings [*]
2: Dietary consistency changes [*]
3: Early eating problems; occasional choking [*]
4: Normal eating habits [*]
, extendedValues=null], ResourceSimplifiedHierarchyItem [path=/data[at0001]/events[at0002]/data[at0003]/items[at0022], code=at0022, itemType=ELEMENT, level=4, text=Handwriting, description=*, comment=null, uncommonOntologyItems=null, occurencesFormal=0..1, occurencesText=Optional, cardinalityFormal=null, cardinalityText=null, subCardinalityFormal=null, subCardinalityText=null, dataType=C_DV_ORDINAL, bindings=null, values=0: Unable to grip pen [*]
1: Able to grip pen but unable to write [*]
2: Not all words are legible [*]
3: Slow or sloppy; all words are legible [*]
4: Normal [*]
, extendedValues=null], ResourceSimplifiedHierarchyItem [path=/data[at0001]/events[at0002]/data[at0003]/items[at0028], code=at0028, itemType=ELEMENT, level=4, text=Patients with gastrostomy and >50% daily nutrition intake via G-tube, description=*, comment=null, uncommonOntologyItems=null, occurencesFormal=0..1, occurencesText=Optional, cardinalityFormal=null, cardinalityText=null, subCardinalityFormal=null, subCardinalityText=null, dataType=DV_CODED_TEXT, bindings=null, values=
  • Yes [*]
  • No [*]
, extendedValues=null], ResourceSimplifiedHierarchyItem [path=/data[at0001]/events[at0002]/data[at0003]/items[at0031], code=at0031, itemType=ELEMENT, level=4, text=Cutting food and handling utensils (patients with gastrostomy), description=*, comment=null, uncommonOntologyItems=null, occurencesFormal=0..1, occurencesText=Optional, cardinalityFormal=null, cardinalityText=null, subCardinalityFormal=null, subCardinalityText=null, dataType=C_DV_ORDINAL, bindings=null, values=0: Unable to perform any aspect of task [*]
1: Provides minimal assistance to caregiver [*]
2: Some help needed with closures and fasteners [*]
3: Clumsy but able to perform all manipulations independently [*]
4: Normal [*]
, extendedValues=null], ResourceSimplifiedHierarchyItem [path=/data[at0001]/events[at0002]/data[at0003]/items[at0081], code=at0081, itemType=ELEMENT, level=4, text=Cutting food and handling utensils (patients without gastrostomy), description=*, comment=null, uncommonOntologyItems=null, occurencesFormal=0..1, occurencesText=Optional, cardinalityFormal=null, cardinalityText=null, subCardinalityFormal=null, subCardinalityText=null, dataType=C_DV_ORDINAL, bindings=null, values=0: Needs to be fed [*]
1: Food must be cut by someone but can still feed slowly [*]
2: Can cut most foods although clumsy and slow; some help needed [*]
3: Somewhat slow and clumsy but no help needed [*]
4: Normal [*]
, extendedValues=null], ResourceSimplifiedHierarchyItem [path=/data[at0001]/events[at0002]/data[at0003]/items[at0037], code=at0037, itemType=ELEMENT, level=4, text=Dressing and hygiene, description=*, comment=null, uncommonOntologyItems=null, occurencesFormal=0..1, occurencesText=Optional, cardinalityFormal=null, cardinalityText=null, subCardinalityFormal=null, subCardinalityText=null, dataType=C_DV_ORDINAL, bindings=null, values=0: Total dependence [*]
1: Needs attendant for self-care [*]
2: Intermittent assistance or substitute methods [*]
3: Independent and complete self-care with effort or decreased efficiency [*]
4: Normal function [*]
, extendedValues=null], ResourceSimplifiedHierarchyItem [path=/data[at0001]/events[at0002]/data[at0003]/items[at0043], code=at0043, itemType=ELEMENT, level=4, text=Turning in bed and adjusting bed clothes, description=*, comment=null, uncommonOntologyItems=null, occurencesFormal=0..1, occurencesText=Optional, cardinalityFormal=null, cardinalityText=null, subCardinalityFormal=null, subCardinalityText=null, dataType=C_DV_ORDINAL, bindings=null, values=0: Helpless [*]
1: Can initiate but not turn or adjust sheets alone [*]
2: Can turn alone or adjust sheets but with great difficulty [*]
3: Somewhat slow and clumsy but no help needed [*]
4: Normal [*]
, extendedValues=null], ResourceSimplifiedHierarchyItem [path=/data[at0001]/events[at0002]/data[at0003]/items[at0049], code=at0049, itemType=ELEMENT, level=4, text=Walking, description=*, comment=null, uncommonOntologyItems=null, occurencesFormal=0..1, occurencesText=Optional, cardinalityFormal=null, cardinalityText=null, subCardinalityFormal=null, subCardinalityText=null, dataType=C_DV_ORDINAL, bindings=null, values=0: No purposeful leg movement [*]
1: Nonambulatory functional movement [*]
2: Walks with assistance [*]
3: Early ambulation difficulties [*]
4: Normal [*]
, extendedValues=null], ResourceSimplifiedHierarchyItem [path=/data[at0001]/events[at0002]/data[at0003]/items[at0055], code=at0055, itemType=ELEMENT, level=4, text=Climbing stairs, description=*, comment=null, uncommonOntologyItems=null, occurencesFormal=0..1, occurencesText=Optional, cardinalityFormal=null, cardinalityText=null, subCardinalityFormal=null, subCardinalityText=null, dataType=C_DV_ORDINAL, bindings=null, values=0: Cannot do [*]
1: Needs assistance [*]
2: Mild unsteadiness or fatigue [*]
3: Slow [*]
4: Normal [*]
, extendedValues=null], ResourceSimplifiedHierarchyItem [path=/data[at0001]/events[at0002]/data[at0003]/items[at0061], code=at0061, itemType=ELEMENT, level=4, text=Dyspnea, description=*, comment=null, uncommonOntologyItems=null, occurencesFormal=0..1, occurencesText=Optional, cardinalityFormal=null, cardinalityText=null, subCardinalityFormal=null, subCardinalityText=null, dataType=C_DV_ORDINAL, bindings=null, values=0: Significant difficulty, considering using mechanical respiratory support [*]
1: Occurs at rest, difficulty breathing when either sitting or lying [*]
2: Occurs with one or more of the following eating, bathing, dressing [*]
3: Occurs when walking [*]
4: None [*]
, extendedValues=null], ResourceSimplifiedHierarchyItem [path=/data[at0001]/events[at0002]/data[at0003]/items[at0067], code=at0067, itemType=ELEMENT, level=4, text=Orthopnea, description=*, comment=null, uncommonOntologyItems=null, occurencesFormal=0..1, occurencesText=Optional, cardinalityFormal=null, cardinalityText=null, subCardinalityFormal=null, subCardinalityText=null, dataType=C_DV_ORDINAL, bindings=null, values=0: Unable to sleep [*]
1: Can only sleep sitting up [*]
2: Needs extra pillows in order to sleep (>2) [*]
3: Some difficulty sleeping at night due to shortness of breath; does not routinely use >2 pillows [*]
4: None [*]
, extendedValues=null], ResourceSimplifiedHierarchyItem [path=/data[at0001]/events[at0002]/data[at0003]/items[at0073], code=at0073, itemType=ELEMENT, level=4, text=Respiratory insufficiency, description=*, comment=null, uncommonOntologyItems=null, occurencesFormal=0..1, occurencesText=Optional, cardinalityFormal=null, cardinalityText=null, subCardinalityFormal=null, subCardinalityText=null, dataType=C_DV_ORDINAL, bindings=null, values=0: Invasive mechanical ventilation by intubation or tracheostomy [*]
1: Continuous use of BiPAP during the night and day [*]
2: Continuous use of BiPAP during the night [*]
3: Intermittent use of BiPAP [*]
4: None [*]
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