| Name of the Instrument/Tool | ANCA-associated vasculitis patient-reported outcome (AAV-PRO) questionnaire |
| First Description |
Robson JC, Dawson J, Doll H, Cronholm PF, Milman N, Kellom K, Ashdown S, Easley E, Gebhart D, Lanier G, Mills J, Peck J, Luqmani RA, Shea J, Tomasson G, Merkel PA. Validation of the ANCA-associated vasculitis patient-reported outcomes (AAV-PRO) questionnaire. Ann Rheum Dis. 2018 Aug;77(8):1157-1164. doi: 10.1136/annrheumdis-2017-212713. Epub 2018 Apr 25. PMID: 29695498; PMCID: PMC7250143.
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| Year | 2018 |
| Domains | |
| Concept of constructs | Health related quality of life |
| Population/Disease | Disease specific |
| Originally developed for | ANCA-associated vasculitis (AAV) |
| Other rheumatic diseases where can be applied (only if validated) |
--- |
| Additional population with no rheumatic diseases |
No |
| Language: Originally published in | English |
| Available in Language | Ukrainian, English |
| REFERENCE IDENTIFICATION | |
| Author/s | Joanna Robson, Jill Dawson, Helen Doll, Peter F Cronholm, Nataliya Milman, Katherine Kellom, Susan Ashdown, Ebony Easley, Don Gebhart, Georgia Lanier, John Mills, Jacqueline peck, Raashid Ahmed Luqmani, Judy Shea, Gunnar tomasson, Peter Merkel |
| Title | Validation of the ANCA-associated vasculitis patient-reported outcomes (AAV-PRO) questionnaire |
| Journal | Annals of Rheumatic Diseases |
| Year | 2018 |
| Vol | 77 |
| Num | 8 |
| Pages | 1157-64 |
| Country | UK, USA and Canada |
| Language | English |
| Other references of interest | |
| Link | https://www.ncbi.nlm.nih.gov/pubmed/29379322 |
| Brief Description |
Robson JC, et al. Health-related quality of life in ANCA-associated vasculitis and item generation for a disease specific patient-reported outcome measure. Patient Relat Outcome Meas. 2018;9:17-34 Overall description of the ‘Stage 1’ of the development of the new disease specific AAV-PRO instrument measuring HRQoL in patients with AAV: item generation and piloting. |
| Link | https://www.ncbi.nlm.nih.gov/pubmed/28864650 |
| Brief Description |
Robson JC, et al. OMERACT Endorsement of Patient-reported Outcome Instruments in Antineutrophil Cytoplasmic Antibody-associated Vasculitis. J Rheumatol 2017;44(10):1529-1535 Report of the approval process by OMERACT for the use of the generic PROMIS instruments (for fatigue, physical functioning, and pain interference) and the AAV-PRO (disease-specific PRO for AAV) in clinical trials of AAV. The instruments were assessed and endorsed by using a novel 5-step assessment tool, the OMERACT Filter 2.0 Instrument Selection Algorithm (OFISA) and red-amber-green checklist (also known as the “eyeball test”). |
| Instrument/Tool Translations References | |
| No other References. | |
| DEVELOPER CONTACT INFORMATION | |
| Correspondence to | Dr Joanna Robson |
| Jo.Robson@uwe.ac.uk | |
| Address | Academic Rheumatology Unit, University of the West of England, Bristol BS28HW, UK |
| Website | --- |
| Available | --- |
| Links | --- |
| DESCRIPTION OF THE INSTRUMENT | |
| Type Of Measure | Questionnaire |
| Brief Description |
The AAV-PRO questionnaire 29-item includes six subscales/domains: “organ-specific symptoms”, “systemic symptoms”, “treatment side effects”, “social and emotional impact”, “concerns about the future”, and “physical function”. The domains provide a comprehensive profile of the impact of AAV and its treatment on patients’ everyday life. |
| Number of Items | 29 (35 initially) |
| Range | 0-29 |
| Responses options/scale |
Yes frequency of experiencing a problem. |
| Developed for | Clinical practice, Research |
| PRACTICAL APPLICATION | |
| Method of administration | Self-administered |
| Recommendations to score |
Scores for each domain are calculated by summing each individual item score (1 point per feature), and then transforming these raw scores to a 0–100 scale. |
| Score Interpretation | Higher scores denoting greater severity or impact. |
| Cut-off points | --- |
| Cut-off points applied to | Not specified |
| Smallest detectable change if described | Organ specific symptoms 3.64, systemic symptoms 3.08, treatment side effects 2.31, social and emotional impact 2.91, concerns about the future 2.79, physical function 1.94. |
| Smallest detectable change applied to | Both |
| Completion time by the patient | - minutes |
| Scoring time by the assessor | - minutes |
| Training to score | Not necessary |
| Strengths | Useful in clinical practice & research, Easy to use |
| Limitations | --- |
| OTHER COMMENTS | |
| Other Comments |
The AAV-PRO is a multidimensional instrument with each separate domain having good measurement properties and consistent with the Rasch unidimentional model. |