Medizininformatik Initiative - CORD - Implementierungsleitfaden

NMD Fragebögen

Die Scores werden mit der Ressource Questionnaire und QuestionnaireResponse abgebildet. Hierbei werden die Fragebögen in der Ressource Questionnaire und die Patientenantworten in der Ressource QuestionnaireResponse abgebildet. Eine Ausnahme ist der 6MWT. Dieser wird mit der Ressource Observation abgebildet.

Beispielhaft wird die Ressource Questionnair für den ISS Score gezeigt:

{
    "resourceType": "Questionnaire",
    "id": "iss-score-nmd",
    "title": "ISS",
    "status": "draft",
    "description": "INCAT Sensory Sum Score",
    "item":  [
        {
            "type": "choice",
            "linkId": "2284344198491",
            "prefix": "1",
            "text": "Nadelstichgefühl - Arme",
            "required": true,
            "answerOption":  [
                {
                    "valueCoding": {
                        "code": "0",
                        "display": "Normales Gefuehl am Zeigefinger (dorsales distales Interphalangealgelenk)"
                    }
                },
                {
                    "valueCoding": {
                        "code": "1",
                        "display": "Abnormes Gefuehl am Zeigefinger (dorsales distales Interphalangealgelenk)"
                    }
                },
                {
                    "valueCoding": {
                        "code": "2",
                        "display": "Abnormes Gefuehl im Handgelenk (Processus styloideus ulnaris)"
                    }
                },
                {
                    "valueCoding": {
                        "code": "3",
                        "display": "Abnormes Gefuehl am Ellenbogen (medialer Humerusepikondylus)"
                    }
                },
                {
                    "valueCoding": {
                        "code": "4",
                        "display": "Abnormes Gefuehl in der Schulter (Akromioklavikulargelenk)"
                    }
                }
            ]
        },
        {
            "type": "choice",
            "linkId": "6062046756756",
            "prefix": "2",
            "text": "Nadelstichgefühl - Beine",
            "answerOption":  [
                {
                    "valueCoding": {
                        "code": "0",
                        "display": "Normales Gefuehl am Hallux (dorsales Interphalangealgelenk)"
                    }
                },
                {
                    "valueCoding": {
                        "code": "1",
                        "display": "Abnormes Gefuehl am Hallux (dorsales Interphalangealgelenk)"
                    }
                },
                {
                    "valueCoding": {
                        "code": "2",
                        "display": "Abnormes Gefuehl am Knöchel (medialer Knoechelknochen)"
                    }
                },
                {
                    "valueCoding": {
                        "code": "3",
                        "display": "Abnormes Gefuehl im Knie (Patella)"
                    }
                },
                {
                    "valueCoding": {
                        "code": "4",
                        "display": "Abnormes Gefuehl in der Leiste (vordere obere Darmbeinwirbelsaeule)"
                    }
                }
            ]
        },
        {
            "type": "choice",
            "linkId": "8708806899225",
            "prefix": "3",
            "text": "Vibrationsempfinden - Arme",
            "answerOption":  [
                {
                    "valueCoding": {
                        "code": "0",
                        "display": "Normales Gefuehl am Zeigefinger (dorsales distales Interphalangealgelenk)"
                    }
                },
                {
                    "valueCoding": {
                        "code": "1",
                        "display": "Abnormes Gefuehl am Zeigefinger (dorsales distales Interphalangealgelenk)"
                    }
                },
                {
                    "valueCoding": {
                        "code": "2",
                        "display": "Abnormes Gefuehl im Handgelenk (Processus styloideus ulnaris)"
                    }
                },
                {
                    "valueCoding": {
                        "code": "3",
                        "display": "Abnormes Gefuehl am Ellenbogen (medialer Humerusepikondylus)"
                    }
                },
                {
                    "valueCoding": {
                        "code": "4",
                        "display": "Abnormes Gefuehl in der Schulter (Akromioklavikulargelenk)"
                    }
                }
            ]
        },
        {
            "type": "choice",
            "linkId": "2961949272175",
            "prefix": "4",
            "text": "Vibrationsempfinden - Beine",
            "answerOption":  [
                {
                    "valueCoding": {
                        "code": "0",
                        "display": "Normales Gefuehl am Hallux (dorsales Interphalangealgelenk)"
                    }
                },
                {
                    "valueCoding": {
                        "code": "1",
                        "display": "Abnormes Gefuehl am Hallux (dorsales Interphalangealgelenk)"
                    }
                },
                {
                    "valueCoding": {
                        "code": "2",
                        "display": "Abnormes Gefuehl am Knöchel (medialer Knoechelknochen)"
                    }
                },
                {
                    "valueCoding": {
                        "code": "3",
                        "display": "Abnormes Gefuehl im Knie (Patella)"
                    }
                },
                {
                    "valueCoding": {
                        "code": "4",
                        "display": "Abnormes Gefuehl in der Leiste (vordere obere Darmbeinwirbelsaeule)"
                    }
                }
            ]
        },
        {
            "type": "choice",
            "linkId": "5446833023534",
            "prefix": "5",
            "text": "Zwei-Punkt-Unterscheidung - Zeigefinger (ventrale Seite: distales Phalanx)",
            "answerOption":  [
                {
                    "valueCoding": {
                        "code": "0",
                        "display": "Normales Gefühl < 4 mm"
                    }
                },
                {
                    "valueCoding": {
                        "code": "1",
                        "display": "5-9 mm"
                    }
                },
                {
                    "valueCoding": {
                        "code": "2",
                        "display": "10-14 mm"
                    }
                },
                {
                    "valueCoding": {
                        "code": "3",
                        "display": "15-19 mm"
                    }
                },
                {
                    "valueCoding": {
                        "code": "4",
                        "display": "> 20 mm"
                    }
                }
            ]
        }
    ]
}

Beispielhaft wird die Ressource QuestionnairResponse für den ISS Score gezeigt:

MRC

ValueSet 'MRCScore'

MRC score

This value set includes codes from the following code systems:

• The following codes from system: SNOMED_CT

  Code	Display
  249949001	No active muscle contraction (finding)
  249950001	Visible muscle contraction only (finding)
  249953004	Movement with gravity eliminated (finding)
  249954005	Movement against gravity (finding)
  298284000	Muscle movement against resistance incomplete (finding)
  249955006	Movement against resistance (finding)

Canonical: https://art-decor.org/fhir/ValueSet/2.16.840.1.113883.3.1937.777.30.11.55--20230415215424

6MWT

RULM

Revised upper limb module for spinal muscular atrophy (doi:10.1002/mus.25430)

PUL

Performance of the Upper Limb Module for DMD (doi:10.1111/dmcn.12213)

MFM-32

Motor function measure (doi:10.1016/j.apmr.2013.04.001)

FSHD

Facioscapulohumeral muscular dystrophy Clinical Score (doi:10.1002/mus.21671)

ISS

INCAT Sensory Sum Score (doi:10.1212/wnl.54.4.943)

QMG

Quantitative Myasthenia Gravis (QMG) Scale (DOI: 10.1097/CND.0b013e31824619d5)

IBM-FRS

Inclusion body myositis functional rating scale: a reliable and valid measure of disease severity (doi:10.1002/mus.20958)