Beyond the symptoms: Personalizing giant cell arteritis care through multidimensional patient reported outcome measure

Y El Miedany; M El Gaafary; M Toth; D Palmer; Ayman Ali; S Bahlas; S Mahran; W Hassan; M H Abu-Zaid; S Saber; W Elwakil

doi:10.1016/j.semarthrit.2023.152285

Beyond the symptoms: Personalizing giant cell arteritis care through multidimensional patient reported outcome measure

Semin Arthritis Rheum. 2023 Dec:63:152285. doi: 10.1016/j.semarthrit.2023.152285. Epub 2023 Oct 28.

Authors

Y El Miedany¹, M El Gaafary², M Toth³, D Palmer⁴, Ayman Ali⁵, S Bahlas⁶, S Mahran⁷, W Hassan⁸, M H Abu-Zaid⁹, S Saber¹⁰, W Elwakil¹¹

Affiliations

¹ Professor Canterbury Christ Church University, England; H. Senior Clinical Lecturer, King's College London, England. Electronic address: secretary@rheumatology4u.com.
² Professor Community and Public Health, Ain Shams University, Cairo, Egypt.
³ H. Senior Clinical Lecturer, King's College London, England; Darent Valley Hospital, Kent, England.
⁴ North Middlesex University Hospital, London, England.
⁵ Darent Valley Hospital, Kent, England.
⁶ Professor of Internal Medicine/Rheumatology, College of Medicine, King Abdulaziz University, Saudi Arabia.
⁷ Professor Rheumatology, Physical Medicine and Rehabilitation, Assiut University, Egypt.
⁸ Professor Rheumatology and Rehabilitation, Benha University, Benha, Egypt.
⁹ Assistant Professor Rheumatology and Rehabilitation, Tanta University, Tanta, Egypt.
¹⁰ Rheumatology and Rehabilitation, Ain Shams University, Cairo, Egypt.
¹¹ Lectuer Rheumatology and Rehabilitation, Alexandria University, Alexanrdia, Egypt.

PMID: 37944298
DOI: 10.1016/j.semarthrit.2023.152285

Abstract

Background: Giant Cell Arteritis (GCA) is the commonest form of systemic vasculitis in people over the age of 50. Published research highlighted the lack of a disease-specific patient reported outcomes (PROMs) for GCA.

Objectives: To assess the validity, reliability and responsiveness to change of a devised disease specific patient self-reported outcome measures questionnaire for Giant Cell Arteritis (GCA).

Methods: The GCA-PROMs was conceptualized based on frameworks outlined in the OMERACT developed core set of Outcome Measures for Large-Vessel Vasculitis and the guiding principles of the FDA guidance. Initially, cognitive interviews were conducted to identify item pool of questions. Item selection and reduction was achieved based on patients as well as an interdisciplinary group of specialists. Rasch and internal consistency reliability analyses were implemented.

Results: A total of 54 GCA patients completed the questionnaire. The GCA-PROMs questionnaire was reliable as demonstrated by a high standardized alpha (0.878-0.983). Content construct assessment of the GCA-PROMs functional disability and QoL revealed significant correlation (p< 0.01) with both HAQ and EQ-5D. Changes in functional disability, QoL showed significant (p< 0.01) variation with diseases activity status in response to therapy.

Conclusions: The developed GCA-PROMs questionnaire is a reliable and valid instrument for assessment of GCA patients. A stratified treatment regimen depending on the individual patient's risk factors as well as preferences and associated comorbidities is the best approach to tailored patient management.

Keywords: Benefit/risk ratio; GCA; GCA-PROMs; Giant cell arteritis; PROMs; Patient education; Patient stratification.

MeSH terms

Giant Cell Arteritis*
Humans
Outcome Assessment, Health Care
Patient Reported Outcome Measures
Quality of Life
Reproducibility of Results