TARGETED LITERATURE REVIEW TO INFORM THE DEVELOPMENT OF A CONCEPTUAL MODEL OF GRAVES' DISEASE AND GRAVES' ORBITOPATHY

Author(s)

Aoife Lydon, Msc1, Lydia Braham-Chaouche, Msc2, Lucinda Cotterill, Msc3, Asha Lehane, Msc3, Agnes Mourier, Msc2, Jessica Flynn, Msc3, Ella Brookes, BSc, MSc4.
1Adelphi Values PROVE, Bollington, United Kingdom, 2Sanofi, Gentilly, France, 3Adelphi Values, Bollington, United Kingdom, 4Clinical Outcome Assessment Scientist, Sanofi, Reading, United Kingdom.
OBJECTIVES: Graves’ disease (GD) is a systemic autoimmune disorder driven by TSH-receptor stimulating antibodies, accounting for 60-80% of hyperthyroidism. GD affects 3% of women and 0.5% of men, with onset typically between 30 to 60 years and is associated with a wide range of physical, psychological, and functional symptoms. Graves Orbitopathy (GO), a common extrathyroidal manifestation of GD, is characterized by ocular symptoms including bulging eyes, swelling, redness, pain, and visual disturbances. Despite the substantial burden of GD and GO, the patient experience of these conditions is not well understood. This targeted literature review aimed to identify the symptoms and impacts of GD and GO and inform the development of separate preliminary conceptual models depicting the patient experience of GD and GO.
METHODS: Searches were conducted using electronic databases (Ovid® MEDLINE®, Embase®, and APA PsycINFO®), Google Scholar, thyroid/endocrinology conferences, patient advocacy group websites, and key reference lists. Abstracts were screened against predefined eligibility criteria; full-text articles were reviewed and relevant data were extracted. Patient reported symptoms and impacts of GD and GO were organized into domains.
RESULTS: Thirteen articles and 28 patient advocacy group stories were selected. For GD, a wide range of symptoms were identified, the most frequent being fatigue, irritability, anxiety, anger, sweating/heat intolerance, weight changes, tremors, irregular/fast heart rate, and shortness of breath. For GO, the most frequently identified symptoms included bulging eyes, eyelid malposition, eye redness, and light sensitivity. Visual function, ocular motility, and pain-related symptoms were also identified. Impacts of GD and GO related to emotional wellbeing, social functioning, activities of daily living, work/study, physical functioning, and sleep.
CONCLUSIONS: This study presents the first preliminary conceptual models for GD and GO, reflecting what matters to patients, highlighting the range of symptoms and impacts experienced. Qualitative interviews with patients are recommended to further refine and strengthen the conceptual models.

Conference/Value in Health Info

2026-11, ISPOR Europe 2026, Vienna, Austria

Value in Health, Volume 29, Issue 12S

Code

PCR109

Topic

Clinical Outcomes, Patient-Centered Research

Topic Subcategory

Patient-reported Outcomes & Quality of Life Outcomes

Disease

Diabetes/Endocrine/Metabolic Disorders (including obesity)

Your browser is out-of-date

ISPOR recommends that you update your browser for more security, speed and the best experience on ispor.org. Update my browser now

×