General and Rhinosinusitis‐Related Quality of Life in Patients With Wegener's Granulomatosis

Srouji, Ibrahim Albert; Andrews, Peter; Edwards, Chris; Lund, Valerie J.

doi:10.1097/01.mlg.0000230440.83375.4b

Cited by 47 publications

(48 citation statements)

References 7 publications

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“…The Royal College of Surgeons of England used the SNOT 22 questionnaire extensively in a National comparative audit of surgery for nasal polyposis and chronic rhinosinusitis. It has also been used as a measure of outcome after septal surgery [20], polypectomy [21] or in patients with Wegener's granulomatosis [22]. It can be completed quickly and easily even in an outpatient setting.…”

Section: Discussionmentioning

confidence: 99%

The impact of tracheostomy on the nose

Tsikoudas

Barnes

White

2011

Eur Arch Otorhinolaryngol

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To establish the effect of tracheostomy on nasal function and quality of life. Teaching Hospital, Scotland, UK. Cross-sectional case-control study. Two groups of patients were selected; a group of ten patients who underwent surgical tracheostomy and a control group of ten patients with confirmed or suspected head and neck malignancy that did not require tracheostomy. Two questionnaires, the SNOT-22 quality of life instrument, and the Rhinogram nasal symptoms score were used to evaluate each group. For the Rhinogram questionnaire the median total score was 13.5 for the tracheostomy group and 2 for the control group (P = 0.02) whilst for the SNOT-22, the mean total scores were 39 and 29, respectively (P = 0.205). The tracheostomy group scored worse for all Rhinogram questions, and for the anosmia score this was independently statistically significant (5 vs. 0 units, P = 0.001). The tracheostomy group most commonly identified "loss of smell & taste" as their most important symptom, compared with only 2 subjects in the control group. Tracheostomy can give rise to nasal symptoms. This needs to be addressed in the routine follow up of these patients.

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Section: Discussionmentioning

confidence: 99%

The impact of tracheostomy on the nose

Tsikoudas

Barnes

White

2011

Eur Arch Otorhinolaryngol

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“…Despite the chronic morbidity observed in patients with AAV, there is little known about how disease manifestations affect HRQOL. Small single‐center studies examining what variables influence HRQOL have suggested that lung damage, joint involvement, and sinonasal involvement have each been potentially important determinants of physical components of HRQOL in different studies (5–7). Determining which disease manifestations influence HRQOL and in what domains they affect HRQOL may help focus treatment for patients with AAV and help evaluate newer therapies.…”

Section: Introductionmentioning

confidence: 99%

Health-related quality of life in patients with newly diagnosed antineutrophil cytoplasmic antibody-associated vasculitis

et al. 2011

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Background Anti-neutrophil cytoplasm antibody-associated vasculitis (AAV) can present with a broad spectrum of signs and symptoms. The relative effects of different manifestations on health related quality of life (HRQOL) is unknown. Methods We conducted an individual patient data meta-analysis of baseline Short Form 36 (SF-36) scores from four randomized controlled trials of patients with newly diagnosed AAV. We determined the associations between organ manifestations at trial entry and the SF-36 Physical Composite Score (PCS) and Mental Composite Score (MCS) using mixed effects models adjusted for demographic factors. Associations with each of the 8 domains of the SF-36 were further explored using multivariate multiple regression. Results SF-36 data was available from 346 patients. Older age (−0.11 points/year; 95% Confidence Interval [CI] −0.21 to −0.012; p=0.029) and neurologic involvement (−5.84, p<0.001) at baseline were associated with lower Physical Composite Scores. Physical Function scores were the most affected and older age (−0.25 points per year, 95% Confidence Interval [CI] −0.38 to −0.11; p<0.001) scores and neurologic involvement (−8.48 points, 95% CI −12.90 to −4.06; p<0.001) had the largest effects. The MCS was negatively affected only by chest involvement (p=0.027) but this effect was not exerted in any particular domain. Conclusions HRQOL in patients with newly diagnosed AAV are complex and incompletely explained by their organ system manifestations.

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“…Until recently, the performance of the SF-36 had not been formally evaluated as an outcome measure in AAV. Both clinical practice and trial data consistently demonstrate that HRQOL is impaired among patients with AAV 24,25,31,32,33,34 .…”

Section: Core Set Domain: Patient-reported Outcomes: Health-related Qmentioning

confidence: 87%

The OMERACT Core Set of Outcome Measures for Use in Clinical Trials of ANCA-associated Vasculitis

Merkel¹,

Aydın²,

Boers

et al. 2011

J Rheumatol

108

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There has been a marked increase in the past 15 years in the number and quality of clinical trials in the idiopathic inflammatory vasculitides, especially the small-vessel vasculitides known as antineutrophil cytoplasmic autoantibody (ANCA)-associated vasculitis [AAV; granulomatosis, with polyangiitis (Wegener's)]. These trials have been conducted by multicenter, international groups in Europe and the United States with financial support provided by government agencies and biopharmaceutical companies. This increased clinical trial activity in vasculitis has been accompanied by the development and validation of new outcome measures — a challenging process for these complex, multiorgan system diseases. The international OMERACT Vasculitis Working Group has developed and implemented an iterative research agenda that has utilized accumulated experience and datasets from several multicenter clinical trials and large cohort studies. This work has led to the development, evaluation, validation, and endorsement, through the OMERACT consensus and validation processes, of a “core set” of outcome measurements for use in clinical trials of AAV. The core set includes domains of disease activity, damage assessment, patient-reported outcomes, and mortality; there is at least one validated outcome measurement instrument available for each domain. This report reviews the domains of illness in AAV included in the OMERACT core set, describes the instruments validated to measure these domains, and presents the approved core set.

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General and Rhinosinusitis‐Related Quality of Life in Patients With Wegener's Granulomatosis

Abstract: Sinonasal involvement impacts significantly on the general QOL of patients with WG and is at least as significant as that of the general rhinosinusitis population. Nasal symptoms that are of particular relevance to this patient group include nasal crusting and epistaxis.

Cited by 47 publications

References 7 publications

The impact of tracheostomy on the nose

The impact of tracheostomy on the nose

Health-related quality of life in patients with newly diagnosed antineutrophil cytoplasmic antibody-associated vasculitis

The OMERACT Core Set of Outcome Measures for Use in Clinical Trials of ANCA-associated Vasculitis

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