This page is part of the MII Implementation Guide PRO (v2027.0.0-ballot.1: 2027 Ballot 5) based on FHIR (HL7® FHIR® Standard) R4. This is the current published version in its permanent home (it will always be available at this URL). For a full list of available versions, see the Directory of published versions

MIDOS2

Overview

The Minimal Documentation System for Palliative Patients (MIDOS2) is an established German symptom screening instrument for palliative care. It was developed by the German Association for Palliative Medicine (DGP) as a German adaptation of the Edmonton Symptom Assessment System (ESAS, Bruera et al. 1991) and validated and further developed by Stiel et al. (2010, 2012).

Key Properties:

• 13 items: 11 symptom items + 1 well-being item + 1 free text for other complaints
• Response scale: 4-point DGP scale for symptoms (none / mild / moderate / severe), separate 4-point scale for well-being
• Time frame: current (past few days)
• License: DGP, free for clinical and research purposes
• German validation: Stiel et al. 2010, 2012
• Administration: 2-5 minutes

Questionnaire Structure

Symptom Scale (4-point)

Well-being Scale (4-point)

Symptom Items

SNOMED candidates reflect the state of research and must be confirmed by terminology server validation.

Score Calculation

Symptom Sum Score

Sum of the 11 symptom items (0-3 each), range 0-33:

symptomSumScore = sum(item 1..11) ∈ [0, 33]

Higher values indicate a greater symptom burden.

Well-being Score

A single item, range 0-3 — not included in the sum score but reported separately as a global quality-of-life component.

Relationship to the PRO-CTCAE Oncology Base Screening

MIDOS2 and the PRO-CTCAE Oncology Base Screening conceptually represent the same symptom list — at differing granularity of the response scales:

A ConceptMap between the response scales is planned for a later iteration.

FHIR Implementation

Language strategy: German as the primary language, English as the translation. MIDOS2 is an originally German instrument.

Terminology strategy: MII-controlled answer codes (a dedicated CodeSystem). Symptom items carry a SNOMED property for external interoperability.

Questionnaire

Canonical URL: https://www.medizininformatik-initiative.de/fhir/ext/modul-pro/Questionnaire/mii-qst-pro-midos-midos2

Implemented capabilities:

• Displayable, Collectable, Calculatable, Extractable, Domain-aligned

The complete resource is in the Questionnaire definition.

CodeSystem and ValueSets

CodeSystem: mii-cs-pro-midos2 — item codes and both response scales with German primary texts and English translations

The complete resource is in the CodeSystem definition.

ValueSets:

• mii-vs-pro-midos2-severity — DGP symptom scale
• mii-vs-pro-midos2-wellbeing — well-being scale

Score Calculation (FHIRPath)

// FHIR variable: symptomSumScore
%resource.item.where(linkId.matches('^midos2-q(0[1-9]|1[01])-')).answer.value.weight().sum()

Literature

1. Stiel S, Pollok A, Elsner F, et al. (2012) Validation of the Symptom and Problem Checklist of the German Hospice and Palliative Care Evaluation (HOPE) Schmerz. (DOI 10.1007/s00482-011-1124-7)

2. Stiel S, Matthes ME, Bertram L, et al. (2010) Evaluation und Weiterentwicklung der Minimal Documentation System (MIDOS) Schmerz. 24(4):416-424 (DOI 10.1007/s00482-010-0972-5)

3. Bruera E, Kuehn N, Miller MJ, Selmser P, Macmillan K. (1991) The Edmonton Symptom Assessment System (ESAS): A simple method for the assessment of palliative care patients Journal of Palliative Care. 7(2):6-9 (PMID 1714502)

4. Hui D, Bruera E. (2017) The Edmonton Symptom Assessment System 25 Years Later: Past, Present, and Future Developments Journal of Pain and Symptom Management. 53(3):630-643 (DOI 10.1016/j.jpainsymman.2016.10.370)

Status: this implementation is marked draft and experimental. Source verification against Stiel et al. 2010/2012 is part of bead kerndatensatzmodul-proms-5jd and is still pending.