Transthyretin Amyloidosis Quality of Life Questionnaire (ATTR-QOL)

The Transthyretin Amyloidosis Quality of Life (ATTR-QOL) questionnaire is the first comprehensive patient reported outcome (PRO) measure designed specifically for ATTR amyloidosis patients.

ARC developed the ATTR-QOL to provide the clinical and research fields with a single, standardized questionnaire that eliminates gaps in measurement and is appropriate for use for any ATTR subtype, or symptomatology. The ATTR was developed in collaboration with IQVIA and involved more than 200 patients and disease experts.

The ATTR-QOL is a validated, disease-specific, patient-reported outcome (PRO) measure that helps researchers and clinicians collect information on the patient experience of this rare disease. This PRO measure is appropriate for all types of ATTR amyloidosis, including hereditary (hATTR or ATTRv), wild-type (ATTRwt), transthyretin amyloid cardiomyopathy (ATTR-CM), and transthyretin amyloid polyneuropathy (ATTR-PN).

ATTR-QOL Overview

The ATTR-QOL is the only PRO measure specifically designed to capture the full multisystemic symptom and impact experience in patients with all types of ATTR. The ATTR-QOL includes the following scored domains.

Five Symptom Scale Scores
Cardiac, peripheral neuropathy, autonomic neuropathy (includes gastrointestinal subscale), and other/emerging symptoms

Four Impact Scale Scores
Daily activities, social/role functioning, emotional wellbeing, and physical functioning

Why the ATTR-QOL Matters

For years, research and care in this rare disease relied on a patchwork of questionnaires created for other conditions like cardiac disease and neuropathies. These tools left gaps in what they measured, missed important symptoms, and placed a heavy burden on patients who had to complete multiple surveys.

The ATTR-QOL was developed for all types of ATTR amyloidosis (including hereditary ATTR, wild-type ATTR, ATTR-CM, and ATTR-PN) with direct input from patients and experts. It eliminates the need for researchers to score and interpret multiple PRO surveys created for other conditions, reduces the likelihood of missing important symptoms and impacts, and lessens the reporting burden on patients, who can complete one questionnaire instead of several.

The ATTR-QOL captures key symptoms and their effects on daily activities, physical functioning, emotional wellbeing, and social/role functioning. That makes it suitable for clinical practice, research, and medical product development.

Development of the ATTR-QOL

The ATTR-QOL was developed in response to the amyloidosis community’s need for a disease-specific tool. ARC partnered with IQVIA to develop the ATTR-QOL. This process involved more than 200 patients and disease experts and followed industry and regulatory recommendations and standards through each phase.

Available Versions

For more information about licensing or using the ATTR-QOL, contact IQVIA at COAsolutions@iqvia.com, call (800) 572-9394, or visit coas.iqvia.com.

ATTR-QOL is available in multiple versions, including:

ATTR-QOLv1 Full item content from development work
ATTR-QOLv2 Reduced item content based on psychometric evaluation
ATTR-QOL short forms Available upon request

Learn More from IQVIA →

References

O’Connor M, Hsu K, Broderick L, McCausland KL, LaGasse K, Rebello S, Carty M, Lousada I. The Transthyretin Amyloidosis – Quality of Life (ATTR-QOL) Questionnaire: Development of a Conceptual Model and Disease-Specific Patient-Reported Outcome Measure. Patient Relat Outcome Meas. 2023 Jul 7;14:213-222. doi: 10.2147/PROM.S411721. PMID: 37441025.

Lovley A, Hsu K, LaGasse K, Lousada I, McCausland KL, Carty MK, Rebello S, Bjorner JB. Reliability and validity of the Transthyretin Amyloidosis – Quality of Life (ATTR-QOL) Questionnaire impact scales. J Patient Rep Outcomes. 2025 Apr 29;9(1):44. DOI: 10.1186/s41687-025-00880-7. PMID: 40299173.

Dimitrios Bampatsias, Sergio Teruya, Alfonsina Mirabal Santos, Juliana C Levy, Kristen Hsu, Phaedra T Johnson, Sabrina Rebello, Andrew Lovley, Kaitlin LaGasse, Kristen L McCausland, Karan Wats, Mathew S Maurer, First Clinical Experience with the Transthyretin Amyloidosis-Quality of Life Questionnaire (ATTR-QOL): Associations with Clinical Characteristics and Established Patient-Reported Outcomes, European Heart Journal – Quality of Care and Clinical Outcomes, 2026;, qcag015, https://doi.org/10.1093/ehjqcco/qcag015