MII IG PRO
2026.2.0 - ci-build Unknown region code '276'

MII IG PRO, published by Medizininformatik-Initiative. This guide is not an authorized publication; it is the continuous build for version 2026.2.0 built by the FHIR (HL7® FHIR® Standard) CI Build. This version is based on the current content of https://github.com/medizininformatik-initiative/kerndatensatzmodul-proms/ and changes regularly. See the Directory of published versions

EORTC QLQ-C30 Scoring

This page includes translations from the original source language in which the guide was authored. Information on these translations and instructions on how to provide feedback on the translations can be found here.

Overview

The EORTC QLQ-C30 (European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire - Core 30) is a standardized, internationally recognized instrument for assessing health-related quality of life in cancer patients.

Key Properties

  • 30 questions in English (primary language) with German translations
  • Multidimensional assessment of quality of life across 15 subscales
  • Standardized 0-100 point scale after linear transformation
  • Validated for oncological patients in various treatment phases
  • Modularly extensible through disease-specific add-on modules

Questionnaire Structure

Function Scales (5 Scales)

Rating: Higher values = Better function/quality of life

Scale Items Description
Physical Functioning (PF) Q1-5 Difficulty with physical activities
Role Functioning (RF) Q6-7 Limitations in work/daily activities
Emotional Functioning (EF) Q21-24 Emotional distress and mood
Cognitive Functioning (CF) Q20, Q25 Concentration and memory
Social Functioning (SF) Q26-27 Social withdrawal and family activities

Symptom Scales (3 Scales)

Rating: Higher values = Greater symptom burden

Scale Items Description
Fatigue (FA) Q10, Q12, Q18 Tiredness and exhaustion
Nausea/Vomiting (NV) Q14-15 Gastrointestinal symptoms
Pain (PA) Q9, Q19 Pain intensity and interference

Single Symptoms (6 Items)

Rating: Higher values = Greater symptom burden

Item Question Symptom
Dyspnoea (DY) Q8 Breathing difficulties
Insomnia (SL) Q11 Sleep disturbance
Appetite Loss (AP) Q13 Decreased appetite
Constipation (CO) Q16 Constipation
Diarrhoea (DI) Q17 Diarrhoea
Financial Difficulties (FI) Q28 Economic burden

Global Health/Quality of Life (1 Scale)

Rating: Higher values = Better quality of life

Scale Items Description Response Scale
Global Quality of Life (QL) Q29-30 Overall assessment of health and quality of life 7-point scale (1-7)

Response Scales

Standard 4-Point Scale (Q1-28)

  1. "Not at all" / "Uberhaupt nicht"
  2. "A little" / "Wenig"
  3. "Quite a bit" / "Massig"
  4. "Very much" / "Sehr"

7-Point Scale (Q29-30)

  1. "Very poor" / "Sehr schlecht"
  2. "Poor" / "Schlecht"
  3. "Fair" / "Mittelmassig"
  4. "Good" / "Gut"
  5. "Very good" / "Sehr gut"
  6. "Excellent" / "Ausgezeichnet"
  7. "Perfect" / "Vollkommen"

Score Calculation

Step 1: Raw Score Calculation

For each scale, the mean of the associated items is calculated:

RawScore = (Sum of item values) / Number of items

Step 2: Linear Transformation (0-100 Scale)

Function Scales (Inversion Required)
Function Score = (1 - (RawScore - 1) / (max - 1)) x 100

For 4-point scale:

Function Score = (1 - (RawScore - 1) / 3) x 100
Symptom Scales and Single Symptoms
Symptom Score = ((RawScore - 1) / (max - 1)) x 100

For 4-point scale:

Symptom Score = ((RawScore - 1) / 3) x 100
Global Quality of Life
QL Score = ((RawScore - 1) / 6) x 100

Score Interpretation

Score Range Function Scales Symptom Scales
0-25 Severe functional impairment No/mild symptom burden
26-50 Moderate functional impairment Mild symptom burden
51-75 Mild functional impairment Moderate symptom burden
76-100 No/mild functional impairment Severe symptom burden

FHIR Implementation

Questionnaire Resource

  • URL: https://www.medizininformatik-initiative.de/fhir/ext/modul-pro/Questionnaire/mii-qst-pro-eortc-qlq-c30
  • Primary Language: English (language = #en)
  • Translations: German translations via CodeSystem designations
  • Answer Options: MII CodeSystems with ordinalValue properties for scoring

CodeSystem & ValueSets

  • CodeSystem: mii-cs-pro-eortc-qlq-c30 – CodeSystem for response spectra in English with German translation
  • ValueSets:
    • mii-vs-pro-eortc-qlq-c30-scale-4pt – Standard 4-point scale
    • mii-vs-pro-eortc-qlq-c30-scale-7pt – Global QoL 7-point scale
    • mii-vs-pro-eortc-qlq-c30-scale-role – Role functioning scale

Scoring Implementation

Automatic score calculation via SDC calculatedExpression:

// FHIRPath
// Example: Physical Functioning (Q1-5, inverted)
(1 - (%resource.item.where(linkId.matches('^qlq-c30-q0[1-5]$')).answer.value.weight().sum()/5 - 1) / 3) * 100

// Example: Fatigue (Q10, Q12, Q18, standard)
((%resource.item.where(linkId in ('qlq-c30-q10'|'qlq-c30-q12'|'qlq-c30-q18')).answer.value.weight().sum()/3 - 1) / 3) * 100

ObservationDefinition Resources

A separate ObservationDefinition exists for each subscale:

  • Function scales: mii-obsdef-pro-eortc-qlq-c30-pf, mii-obsdef-pro-eortc-qlq-c30-rf, etc.
  • Symptom scales: mii-obsdef-pro-eortc-qlq-c30-fa, mii-obsdef-pro-eortc-qlq-c30-nv, etc.
  • Single symptoms: mii-obsdef-pro-eortc-qlq-c30-dy, mii-obsdef-pro-eortc-qlq-c30-sl, etc.
  • Global QoL: mii-obsdef-pro-eortc-qlq-c30-ql

Missing Data

EORTC Guidelines

  • At least 50% of items in a scale must be answered
  • Replacement of missing values with the mean of the available items in the scale
  • Exclusion of the scale if more than 50% of values are missing

FHIR Implementation

Missing data handling via FHIRPath expressions:

// Check for sufficient responses (example PF scale)
%resource.item.where(linkId.matches('^qlq-c30-q0[1-5]$')).where(answer.exists()).count() >= 3

References

  1. Aaronson NK, et al. (1993) The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology J Natl Cancer Inst. 85(5):365-76

  2. Fayers PM, et al. (2001) The EORTC QLQ-C30 Scoring Manual (3rd Edition) European Organisation for Research and Treatment of Cancer, Brussels https://www.eortc.org/app/uploads/sites/2/2018/02/SCmanual.pdf

Usage in the MII Context

The EORTC QLQ-C30 serves as a reference instrument within the MII PRO Module for:

  • Oncological quality of life measurement in clinical and research settings
  • Cross-domain harmonization with other PRO instruments, particularly mapping to PROMIS scales
  • Population-based scoring and normative value comparisons
  • Modularly extended assessments through disease-specific EORTC modules

This implementation follows the MII terminology strategies and uses MII CodeSystems for score calculations.