Assessing the effectiveness of measurement scales in evaluating the health-related quality of life in rare disease patients after treatment: a systematic review

Dumbuya, John Sieh; Ahmad, Bashir; Zeng, Cizheng; Chen, Xiuling; Lu, Jun

doi:10.1186/s12955-024-02324-0

Table 3 COSMIN checklist for psychometric properties of quality of life scales

From: Assessing the effectiveness of measurement scales in evaluating the health-related quality of life in rare disease patients after treatment: a systematic review

Psychometric Property	EQ-5D	SF-36	SF-12	VAS	PedsQL	MG-QoL15r	PHQ-9	HADS	HAQ-DI	INQOL	EORTC QLQ-C30
Reliability	High	High	High	High	Strong	High	High	High	High	High	High
Internal consistency	Adequate	Excellent	Adequate	Limited evidence	Moderate	Excellent	Excellent	Excellent	Excellent	Excellent	Excellent
Test–retest reliability	Strong	Strong	Moderate	Limited evidence	Limited evidence	Strong	Strong	Strong	Strong	Strong	Strong
Validity	Strong	High	Moderate	Strong	High	High	Strong	High	Strong	High	High
Content validity	Limited to general health constructs	Comprehensive domains	Simplified domains	Simplistic health measure	Relevant to paediatric domains	Disease-specific and highly relevant	Focused on mental health	Tailored for anxiety and depression	Sensitive to physical functioning	Specific to neuromuscular concerns	Tailored for oncology domains
Construct validity	Moderate	High	Moderate	Limited	High	High	High	High	High	High	High
Cross-cultural validity	High	High	Adequate	High	Adequate	Limited evidence	High	Adequate	Adequate	Limited evidence	Adequate
Responsiveness	Moderate	Moderate	Low	Limited	Moderate	High	Moderate	High	Moderate	Strong	High
Sensitivity to change	Moderate	Moderate	Low	Limited	Moderate	High	Moderate	High	High	Moderate	High
Specificity to interventions	Generalised across diseases	Broad health domains	Simplified version of SF-36	Simplistic measure of health improvement	Disease-specific (e.g., paediatrics)	Disease-specific sensitivity	Mental health-focused	Tailored for anxiety and depression	Disability-focused	Neuromuscular QoL	Cancer-specific domains
Practical Application
Usability	High	Moderate	High	High	Moderate	Moderate	High	Moderate	Moderate	Moderate	Moderate
Administration time	Short	Moderate	Short	Short	Moderate	Moderate	Short	Moderate	Moderate	Moderate	Moderate

EORTC QLQ-C30 European organisation for research and treatment for cancer quality of life questionnaire-30, EQ-5D Europe quality of life-5 dimension, HADS Hospital anxiety and depression scale, HAQ-DI Health assessment questionnaire disability index, INQOL Individualised neuromuscular quality of life, MG-QoL-15r Myasthenia gravis quality of life 15-items revised version, PedsQL Paediatric quality of life inventory, PHQ-9 Patient health questionnaire-9, SF-12 Short form health survey 12 items, QoL Quality of life, SF-36 Short form health survey 36 items, VAS Visual analogue scale
Explanation of Key Psychometric Properties
1. Reliability: Measures the consistency of the instrument over time
Test–retest reliability: EQ-5D and SF-36 demonstrated strong reliability in repeated applications. PedsQL had less evidence supporting this aspect
2. Validity: Examines how well the instrument measures what it claims
Content validity: Disease-specific tools like MG-QoL15r scored high due to their tailored design, while EQ-5D was limited to general health constructs
3. Responsiveness: Assesses the instrument's ability to detect changes over time
MG-QoL15r demonstrated high responsiveness, making it suitable for tracking changes in specific rare diseases
4. Practical application: Evaluates the ease of use and administrative feasibility
Generic tools (EQ-5D, SF-12) were easier to administer, while disease-specific tools required more detailed setups but provided richer data

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ISSN: 1477-7525

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