Patient questionnaire captures AAV burdens doctors may miss
Study in Germany finds AAV-PRO may be useful in routine clinical practice
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The ANCA-associated vasculitis Patient-Reported Outcome (AAV-PRO) questionnaire captures physical, social, emotional, and symptom-related burdens that are closely linked to difficulties in daily life but are not always reflected in physician assessments.
That’s according to a study in Germany that used the German-language version of the AAV-PRO questionnaire, which had been previously validated.
The findings suggest that the AAV-PRO “in routine clinical practice alongside other patient-reported and physician-reported outcome measures may support patient-centered care and shared therapeutic decision-making,” the researchers wrote.
The study, “Evaluating disease burden in German AAV patients using the AAV-PRO: associations with disease activity, physical function, depression, fatigue and quality of life,” was published in the Journal of Patient-Reported Outcomes.
AAV is a group of rare autoimmune diseases in which inflammation damages small blood vessels. The disease can affect multiple organs and is often marked by relapses, or periods of symptom worsening, followed by periods of remission (no symptoms).
Disease affects quality of life regardless of severity
Severity is commonly assessed by measuring disease activity and organ damage. However, these measures do not always capture the full burden patients experience. Fatigue, pain, physical limitations, treatment side effects, and emotional distress may persist even though the disease appears well controlled.
PROs allow patients to describe how a disease and its treatment affect their symptoms, daily activities, and quality of life. The AAV-PRO was developed to assess areas that are particularly relevant to people with AAV, including symptoms, treatment side effects, physical function, social and emotional impacts of the disease, and concerns about the future.
While a German-language version of the AAV-PRO has been validated, limited information is available on how its scores relate to other commonly used measures in routine clinical practice. Earlier studies mainly evaluated the questionnaire’s links to general measures of quality of life and depression.
To learn more, a team led by researchers at University Hospital Duesseldorf recruited 70 adults with AAV. They had a mean age of 60.1, and 48.5% were women.
Participants had been living with the disease for an average of 10.5 years. Granulomatosis with polyangiitis was the most common AAV type (64.3%), followed by eosinophilic granulomatosis with polyangiitis (22.9%) and microscopic polyangiitis (12.8%).
More than one-third of patients (38.5%) reported at least one relapse in the prior two years, while physicians identified relapses in 20% of patients during the same period.
Patients and physicians evaluated several measures at the study’s start and again three to six months later.
Patients completed the AAV-PRO along with several established questionnaires of different aspects of health and daily life. These included the Short Form-36, which assesses health-related quality of life; the Fatigue Severity Scale, which measures fatigue; and the Index for Measuring Participation Restrictions questionnaire, which evaluates restrictions in participating in everyday activities.
They also completed the Hannover Functional Ability Questionnaire, which assesses physical abilities and limitations in daily activities; the Patient Health Questionnaire-9, which screens for symptoms of depression; and the Life Orientation Test-Revised, which measures optimism and expectations about the future.
Physicians evaluated disease activity using the Birmingham Vasculitis Activity Score, permanent disease-related damage with the Vasculitis Damage Index, and side effects associated with glucocorticoid treatment through the Glucocorticoid Toxicity Index.
The researchers examined how scores in each of the six AAV-PRO domains related to these validated patient- and physician-reported measures.
They found agreement between patients and physicians on whether the disease was active or inactive in 60% of cases. Patients with self-reported active disease had higher scores across all six AAV-PRO domains, indicating more severe problems. They also reported a greater fatigue burden.
Comparing patient ratings across questionnaires
Patient ratings in all six AAV-PRO domains were strongly associated with scores on the dedicated questionnaire for functional ability, indicating that patients with higher disease burden had greater difficulty performing everyday activities. AAV-PRO domains were also moderately correlated with scores on the depression questionnaire.
AAV-PRO’s physical function domain was very strongly associated with several established measures of physical function, “reflecting overlap with limitations in daily activities,” the researchers wrote.
Similarly, patient responses to questions about the disease’s social and emotional impact and concerns about the future were strongly related to established measures of social functioning and ability to perform daily activities.
AAV-PRO’s domains of organ-specific and systemic (body-wide) symptoms were each strongly linked to other measures of functional ability, supporting the idea that AAV symptoms can substantially interfere with patients’ daily lives.
The treatment side effects category on AAV-PRO was significantly associated with the standard functional ability measure, but not with physician-rated glucocorticoid toxicity or permanent disease damage. This suggests that patients may experience treatment burden differently from what is captured by standard, physician-rated assessments.
The AAV-PRO also showed no significant associations with the dedicated fatigue questionnaire or the measure of optimism and expectations, suggesting that separate tools may still be needed to fully assess these areas.
“These results support the use of the AAV-PRO alongside traditional physician-reported assessments and established patient-reported measures,” the team wrote. “While certain domains, particularly physical functioning, show substantial overlap with established generic instruments, the AAV-PRO additionally captures disease-specific psychosocial burden, treatment-related concerns, and future-related worries that are not comprehensively represented in generic quality-of-life measures.”
Douglas G. Saxby
My GPA "presented" on July 24,2015. I tried as hard as i could to return my life to some sense of "normalcy" Any enjoyable activity leaves me bedridden with fatigue the following day. The next day I'm ambulatory, & on the 3rd day I can at least fend for myself. I often use the analogy that I'm like a dying battery that recharges to 20% & lasts about 4 hours before it's dead again. I firmly believe I was meant to expire that day in July 2015, and the unrelenting fatigue leaves me wishing I had.