Validation of the ANCA-associated vasculitis patient-reported outcomes (AAV-PRO) questionnaire

Robson, Joanna; Dawson, Jill; Doll, Helen; Cronholm, Peter F.; Milman, Nataliya; Kellom, Katherine; Ashdown, Susan P.; Easley, Ebony; Gebhart, Don; Lanier, Georgia; Mills, John A.; Peck, Jacquelin; Luqmani, Raashid; Shea, Judy A.; Tómasson, Gunnar; Merkel, Peter A.

doi:10.1136/annrheumdis-2017-212713

Cited by 39 publications

(60 citation statements)

References 38 publications

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“…The prospective Cure Glomerulonephropathy cohort plans to collect patient-reported data on both generic and disease-specific outcomes (50). Glomerular disease-specific measures for patients with systemic ANCA-associated vasculitis and the FSGS symptom diary/effect questionnaire are starting to be validated (11,51). However, the importance of these outcomes to patients and caregivers highlights the need to develop instruments that can be used in specific diseases but also across a range of glomerular diseases.…”

Section: Discussionmentioning

confidence: 99%

Identifying Outcomes Important to Patients with Glomerular Disease and Their Caregivers

Carter

Gutman

Logeman

et al. 2020

CJASN

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Background and objectivesShared decision making in patients with glomerular disease remains challenging because outcomes important to patients remain largely unknown. We aimed to identify and prioritize outcomes important to patients and caregivers and to describe reasons for their choices.Design, setting, participants, & measurementsWe purposively sampled adult patients with glomerular disease and their caregivers from Australia, Hong Kong, the United Kingdom, and the United States. Participants identified, discussed, and ranked outcomes in focus groups using the nominal group technique; a relative importance score (between zero and one) was calculated. Qualitative data were analyzed thematically.ResultsAcross 16 focus groups, 134 participants (range, 19–85 years old; 51% women), including 101 patients and 33 caregivers, identified 58 outcomes. The ten highest-ranked outcomes were kidney function (importance score of 0.42), mortality (0.29), need for dialysis or transplant (0.22), life participation (0.18), fatigue (0.17), anxiety (0.13), family impact (0.12), infection and immunity (0.12), ability to work (0.11), and BP (0.11). Three themes explained the reasons for these rankings: constraining day-to-day experience, impaired agency and control over health, and threats to future health and family.ConclusionsPatients with glomerular disease and their caregivers highly prioritize kidney health and survival, but they also prioritize life participation, fatigue, anxiety, and family impact.

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Section: Discussionmentioning

confidence: 99%

Identifying Outcomes Important to Patients with Glomerular Disease and Their Caregivers

Carter

Gutman

Logeman

et al. 2020

CJASN

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“…The OMERACT Vasculitis Working Group developed a 29-item patient-reported outcome (PRO) tool, the AAV-PRO questionnaire 225,226 , which covers six domains (organ-specific symptoms, systemic symptoms, treatment adverse effects, social and emotional effects, concerns about the future, and physical function), following patient qualitative interviews to address this unmet need. The AAV-PRO is being integrated into ongoing randomized controlled trials.…”

Section: Box 4 | a Patient's Experience Of Aavmentioning

confidence: 99%

“…Similarly, the Patient-Reported Outcomes Measurement Information System (PROMIS) covers fatigue, physical functioning and pain interference. Both PRO systems assess function and QOL, are complementary, and require further validation, but they offer options to ensure patients' perspectives are considered when assessing disease activity in AAV 225,226 .…”

Section: Box 4 | a Patient's Experience Of Aavmentioning

confidence: 99%

ANCA-associated vasculitis

Kitching

Anders

Basu

et al. 2020

Nat Rev Dis Primers

509

504

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The anti-neutrophil cytoplasmic antibody (ANCA)associated vasculitides (AAVs) are diseases characterized by inflammation of blood vessels, endothelial injury and tissue damage. The three types of small-vessel vasculitis, namely granulomatosis with polyangiitis (GPA), microscopic polyangiitis (MPA) and eosinophilic GPA (EGPA; previously known as Churg-Strauss syndrome), feature a loss of tolerance to neutrophil primary granule proteins, most often leukocyte proteinase 3 (PR3; also known as myeloblastin) or myeloperoxidase (MPO) (Table 1). The vessels involved in AAV are typically capillaries, arterioles and venules but small arteries and veins may also be affected. Autoimmunity is documented clinically by serum ANCAs to PR3 (PR3-ANCA) or MPO (MPO-ANCA), which are generally associated with the main syndromic AAV presentations (box 1). AAVs collectively represent one of several types of autoimmune vasculitis (Fig. 1). GPA and MPA can involve small blood vessels in any organ or tissue but commonly affect the upper and lower respiratory tract and the kidneys (box 2). Patients with AAV typically present with severe organ-threatening or life-threatening disease, although less severe presentations also occur. GPA is predominantly associated with PR3-ANCA and its clinical features typically include sinonasal disease, lower respiratory tract involvement with pulmonary haemorrhage and granulomatous inflammation, and glomerulonephritis. MPA is usually associated with MPO-ANCA and clinical features include more severe renal disease and some of the manifestations of GPA but without granulomatous inflammation. EGPA is characterized by asthma, eosinophilia and, in many (but not all) cases, vasculitis. EGPA is less common than GPA or MPA and, in some cases, is associated with ANCAs, mainly MPO-ANCA (Table 1). Although categorized as a form of AAV, EGPA has less overlap with the other AAVs than that between GPA and MPA with regard to its genetic, pathogenetic, and clinical features and its management and is typically considered a separate entity. Improvements in treatment and prognosis for patients with AAV have resulted from the translation of both preclinical and clinical research findings. Here, we provide an updated overview of the clinical and

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“…Differences in quality of life observed in MAINRITSAN 1 are difficult to interpret because completion of the survey was optional and a significant amount of data is missing 162. The recent development of an AAV specific patient reported outcome measure will enable the assessment of AAV specific quality of life (for example, AAV symptoms, side effects, emotional impact, uncertainty) in future studies 163. No studies have evaluated psychosocial interventions in AAV.…”

Section: Quality Of Life In Aavmentioning

confidence: 99%

Management of ANCA associated vasculitis

Wallace

Miloslavsky

2020

BMJ

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Anti-neutrophil cytoplasmic antibody (ANCA) associated vasculitis (AAV) is a small to medium vessel vasculitis associated with excess morbidity and mortality. This review explores how management of AAV has evolved over the past two decades with pivotal randomized controlled trials shaping the management of induction and maintenance of remission. Contemporary AAV care is characterized by approaches that minimize the cumulative exposure to cyclophosphamide and glucocorticoids, increasingly use rituximab for remission induction and maintenance, and consider therapies with less toxicity (for example, methotrexate, mycophenolate mofetil) for manifestations of AAV that do not threaten organ function or survival. Simultaneously, improvements in outcomes, such as renal and overall survival, have been observed. Additional trials and observational studies evaluating the comparative effectiveness of agents for AAV in various patient subgroups are needed. Prospective studies are necessary to assess the effect of psychosocial interventions on patient reported outcomes in AAV. Despite the expanding array of treatments for AAV, little guidance on how to personalize AAV care is available to physicians.

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Validation of the ANCA-associated vasculitis patient-reported outcomes (AAV-PRO) questionnaire

Abstract: The AAV-PRO, a new disease-specific PRO measure for AAV, has good face and construct validity, is reliable, feasible and discriminates among disease states.

Cited by 39 publications

References 38 publications

Identifying Outcomes Important to Patients with Glomerular Disease and Their Caregivers

Identifying Outcomes Important to Patients with Glomerular Disease and Their Caregivers

ANCA-associated vasculitis

Management of ANCA associated vasculitis

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