Health-related quality of life in AAV tied to youth, gender in new review

Women and younger patients tended to report worse life quality measures

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by Steve Bryson, PhD |

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Women and younger people with ANCA-associated vasculitis (AAV) tended to report worse health-related quality of life measures than do others in assessments, according to a review of published studies.

More research is needed to assess disease-specific complaints about quality of life, the investigators said — and the team also suggested that patient-reported studies that focus on particular conditions may need to be improved.

“Generic [assessments] are useful in measuring significant changes, but lack sensitivity to specific symptoms and unique AAV-related issues,” the researchers wrote, while also noting that “existing disease-specific [assessments] have limitations and may not fully capture [an] AAV patient’s perspective on disease and treatment burden.”

AAV patients with neurological and nose or sinus issues were likely to report poorer health-related quality of life, as were those with depression or anxiety. The studies also found that individuals with neurological problems likely reported lower quality of life because of  pain, impaired mobility, or nerve damage.

Overall, people with AAV were six times more likely to experience anxiety and five times more likely to report depression than were healthy individiuals. Pain, difficulty sleeping, and fatigue all contributed to impaired health-related quality of life in several studies.

The review study, “A systematic review of patient reported outcome measures in patients with anti-neutrophil cytoplasmic antibody associated vasculitis,” was published in the journal Rheumatology.

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AAV is a group of autoimmune disorders marked by the generation of self-reactive antibodies, called ANCAs, that cause inflammation and damage to small blood vessels. AAV symptoms vary, depending on the organ or tissue in which the damage occurs. People with AAV also may experience chronic symptoms such as fatigue and pain.

In this review, the researchers reported that socioeconomic factors such as unemployment were “significantly associated with poorer mental health outcomes.”

People with AAV oftentimes lost jobs or income after their diagnosis, with more than half reporting unemployment more than three years after diagnosis, or making job changes. Women were three times more likely to lose their jobs than were men.

Patients younger than 65 tended to report worse mental health, while those older than 65 said their physical health had declined. Studies also linked unemployment with declines in mental health.

The review focused on studies using patient-reported outcome measures, known as PROMs. However, only two of the 30 studies used measures specifically related to AAV. The rest were based on generic assessments.

PROMs are tools that assess disease burden, activities of daily living, psychological health, and health-related quality of life from a patient’s perspective. PROMs can either be generic —  applying to individuals regardless of health condition — or disease-specific.

Current health-related quality of life assessments ‘limited’

Limited research has been done using PROMs in AAV, with only a few clinical trials including them as study outcomes. The researchers suggested more study is needed to improve disease-specific PROMs, particularly those focusing on vasculitis patients.

“While PROMs effectively assess outcomes important to patients, current tools are limited” in their usefulness as measures to assess health-related quality of life for people with AAV, the team wrote.

“Further research is needed to enhance disease specific PROMs, ensuring they meet the needs and address the issues that matter most to those living with AAV,” they added.

While [available measures] effectively assess outcomes important to patients, current tools are limited. Further research is needed to enhance disease specific [assessments], ensuring they meet the needs and address the issues that matter most to those living with AAV.

Several studies found no relationship between generic outcome measures and standard assessments of disease activity, suggesting that health-related quality of life may be influenced by factors unrelated to the diagnosis itself, the researchers noted.

While there are disease activity-measuring tools, such as  the Birmingham Vasculitis Activity Score (BVAS) and Vasculitis Disease Index (VDI), they lack patient involvement, according to the researchers. That limits their usefulness for assessing the burden of disease and treatment on health-related quality of life.

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Here, a team led by researchers at the University of Manchester reviewed published studies to examine existing PROMs used in AAV and to identify factors that relate to poorer reports of health-related quality of life.

The 30 studies enrolled a total of 4,150 AAV patients, 51% of whom were women. Three-quarters of the participants had the AAV subtype granulomatosis with polyangiitis (GPA). Another 16% had microscopic polyangiitis, and about 8% had eosinophilic granulomatosis with polyangiitis.

Across all studies, 22 different assessments were applied. Most used a  36-item short-form health survey (SF-36), a set of generic measures of quality of life measures.

PROMs that assessed generic symptoms included the Beck depression inventory, the hospital anxiety and depression scale (HADS), and the fatigue severity scale.

Two studies developed AAV disease-specific PROMs, and three others applied these tools.

Of the 15 studies that correlated health-related quality of life with disease activity, 13 (86.6%) showed no relationship between components of the SF-36 and the standard disease-activity measuring tools, disease duration, relapse rates, or organ involvement. This suggested that health-related quality of life “may be influenced by factors unrelated to the diagnosis itself or is outside the scope of the SF-36,” the researchers wrote.

Most of the 22 studies (73.3%) that assessed the impact of treatment on health-related quality of life found that sustained remission improved quality of life. Others found the use of glucocorticoids was linked with worse quality of life, “suggesting potential cumulative damage from relapses and repeated steroid treatments,” the researchers wrote.