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Published on: December 11, 2013
Measuring health-related quality of life in patients with peripheral vascular malformations with PROMIS® computerized
Delano J de Oliveira Marreiros1, Max M Lokhorst1, Danny A Young-Afat1
1Department of Plastic, Reconstructive and Hand Surgery, Amsterdam University Medical Centers, Amsterdam, the Netherlands.
Background:
The Patient-Reported Outcomes Measurement Information System (PROMIS) computerized adaptive tests (CATs) have been recommended for measuring health-related quality of life (HRQoL) in rare diseases.
Objective:
To assess whether PROMIS CATs reliably measure HRQoL core outcome domains in adults with vascular malformations, and if so, to establish reference values for this population.
Methods:
In this prospective cohort study, adult patients with vascular malformations at our tertiary referral center were invited to complete PROMIS CATs measuring HRQoL core outcome domains, followed by a retest seven days after completing the first questionnaires. Patients completed PROMIS CATs on pain interference, physical function, anxiety, depression, ability to participate in social roles and activities, and the PROMIS numeric rating scale (NRS) on pain intensity. Test-retest reliability was quantified by calculating intraclass correlation coefficients (ICC), standard errors of measurement (SEM) and smallest detectable changes (SDC). An ICC ≥0.7 was considered adequate. Moreover, descriptive statistics for each CAT were calculated and compared against the Dutch general population.
Results:
One-hundred-twenty-three patients completed at least one CAT and 55 patients completed the retest of at least one CAT. All ICCs were above 0.85, SEMs were under 5 points and SDCs were around 10 points, indicating adequate test-retest reliability and measurement errors. All average CAT scores of patients with vascular malformations were within normal limits compared to PROMIS reference values for the Dutch general population.
Conclusion:
PROMIS CATs reliably measure physical, mental and social HRQoL in adults with vascular malformations. Reference values for PROMIS CATs in this population were established.
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