Patients with low AAV activity express concerns using AAV-PRO

Survey given men also raises possibility that erectile problems are common

Steve Bryson, PhD avatar

by Steve Bryson, PhD |

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Concerns about the future, their disease’s social and emotional impact, and bodywide symptoms were prominent among those reported by ANCA-associated vasculitis (AAV) patients with low disease activity in a survey study from Mexico.

People were responding to the AAV patient-reported outcomes (AAV-PRO) questionnaire, and its specific domains were found to associate with other measures of disease outcomes, further emphasizing its clinical relevance.

Notably, more than two-thirds of male patients reported some degree of erectile dysfunction in a separate questionnaire given to this group.

“To our knowledge, the present study is the first to provide information on sexual function in men with AAV,” the researchers wrote.

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AAV-PRO created to help patients evaluate their disease and treatment

The study, “Patient-reported outcomes in ANCA-associated vasculitis: a cross-sectional study to explore the interactions between patients’ and physicians’ perspectives,” was published in the journal Rheumatology International.

AAV is a group of autoimmune diseases marked by inflammatory damage to small blood vessels. Kidney and lung involvement are among the most common manifestations of AAV.

However, patients can experience other specific and nonspecific symptoms, such as fatigue, numbness, muscle weakness, cognitive impairment, eye and ear pain, abdominal pain, depression, and anxiety.

Because patients and clinicians often have differing opinions on the importance of these symptoms, an international expert committee developed and validated the AAV-PRO questionnaire. It is considered a reliable tool for patients in describing the impact of their disease and its treatment.

A 29-item questionnaire, the AAV-PRO contains six domains: organ-specific symptoms, systemic (bodywide) symptoms, treatment side effects, social and emotional impact, concerns about the future, and physical function. Scores range from 0 to 100, with higher values indicating a more severe disease impact.

Researchers in Mexico evaluated how well the AAV-PRO associated with clinical variables or other clinical outcomes in 70 AAV patients (44 women and 26 men), with a median age of 53.5 (range, 43-61), being treated at a center in Mexico City. Patients’ disease duration ranged from about three to 11 years.

All completed the AAV-PRO, and male patients also filled out the International Index of Erectile Function (IIEF-5) questionnaire. Disease activity and damage were assessed by the Birmingham vasculitis activity score (BVAS) and the vasculitis damage index (VDI), as well as by patient and physician global assessments. Vasculitis refers to blood vessel inflammation.

At the time of their recruitment, all patients showed low disease activity.

Higher AAV-PRO scores, indicating greater impact, were reported in domains addressing concerns about the future, followed by social and emotional issues, and systemic symptoms.

Higher scores on AAV-PRO’s organ-specific symptoms, treatment side effects, and physical function domains associated significantly with higher patient assessment scores, indicating a reporting of more severe disease. A significant link also was detected between worse organ-specific symptoms on AAV-PRO and worse VDI-assessed vasculitis damage.

Extent of erectile dysfunction reporting ‘a striking result’

No significant relationships were seen between AAV-PRO domain scores and clinical variables such as disease duration, dose of prednisone treatment, BVAS score, or inflammatory markers.

Significantly more troublesome treatment side effects were reported on the AAV-PRO by women, those younger than age 50, and people living with AAV for less than five years, further analyses showed. Younger patients also had poorer scores regarding concerns about the future.

Of the 24 men who completed the IIEF-5 questionnaire, 17 (70.8%) reported some degree of erectile dysfunction, with moderate dysfunction reported by 12 men and severe by the remaining five.

As information is limited concerning AAV patients’ sexual well-being, this was “a striking result,” the researchers wrote.

Erectile dysfunction also is associated with other autoimmune conditions, such as rheumatoid arthritis and ankylosing spondylitis, supporting the notion that “impaired sexual health is prevalent in men” with such conditions, the researchers wrote.

The “impact of AAV on sexuality in women remains unexplored and deserves attention in future studies,” they added.

There were no significant associations between IIEF-5 scores and clinical variables, AAV-PRO domains, disease activity, or damage scores. Erectile dysfunction was not associated with age, disease duration, clinical presentation, simultaneous health conditions, treatment, blood tests, disease activity, or damage.

In this group of AAV patients with low disease activity, “correlations were found between the specific domains of the AAV-PRO and other outcome measures,” the researchers wrote.

“It is essential to capture and understand patient-centered outcomes, needs, and perspectives in the clinical care of AAV,” they concluded.