Clinical Activity Scores and Quality of Life in Thyroid Eye Disease: a study among Nigerian patients

Abstract

BACKGROUND

Thyroid eye disease (TED) is a rare, debilitating autoimmune disorder associated with orbital inflammation, pain, proptosis, diplopia, facial disfigurement and in severe cases, visual loss. Consequently, limitations in visual and psychosocial functioning could significantly impact the quality of life (QOL) of affected individuals. The clinical activity score (CAS)¹ and the European Group on Graves’ Orbitopathy (EUGOGO) questionnaire ^2,3 are widely used standardized assessment tools for disease severity and impact on QOL, respectively. Efforts to improve the standard of care in TED prompted the adoption of CAS & EUGOGO QOL. This study aims to utilize these tools to assess the impact of TED among Nigerian patients attending a tertiary health institution, with the goal of improving the standard of care.

METHODS

A prospective cross-sectional study of all TED patients attending the Oculoplastics unit of the study tertiary centre from January 2017 to June 2024 was conducted. Data collection was done using the Clinical Activity Score (CAS) of the Graves’ Orbitopathy Clinic proforma for new patients and the self-administered GO-QOL EUGOGO questionnaire (English Version). The visual functioning subscale of the GO-QOL questionnaire was used to assess the impact on activities of daily living such as driving, reading, watching TV, and mobility. The psychosocial subscale was used to assess the impact of TED in the domains of appearance changes, emotional well-being, and social functioning.  Patients were categorized according to disease activity, severity, and limitations in visual and psychosocial functioning. IBM-SPSS Version 29 was used for data analysis. Ethical approval was obtained from the Institutional Review Board, and informed consent was obtained from patients.

RESULTS

Eighty-four patients (aged 17 – 76 years) were studied. There were 71 (84.5%) females. Female-to-Male ratio was 5.5:1. Diagnosis of Graves’ disease (hyperthyroidism) was made in 63 (75%), euthyroid in 20 (23.8%) and hypothyroidism in 1 (1.2%). Clinical activity score revealed that 31 (36.9%) had active disease (CAS ≥ 3/7) and 53 (63.1%) had inactive disease. The associated soft tissue inflammatory changes are as shown in Figure 1.

Seventy-one (84.5%) had mild TED, while 2 (2.4%) had severe TED. Fifty-nine (70.2%)had mild impairment in QOL. There were limitations in visual and psychosocial functioning in 35 (41.7%) and 39 (46.4%) of the study population, respectively. The various domains of limitations are as shown in Tables 1 and 2, with reading,  watching TV and hobby being the leading visual limitations, while feeling of change in appearance, being stared at in the street and avoiding photographs were the leading psycho-social limitations.

Figure 2 shows a negative correlation between CAS and QOL, represented by the visual functioning and psychosocial functioning subscales' scores.

DISCUSSION

We observed a high prevalence of inactive disease (63.1%), though a considerable proportion (36.9%) had active disease with mild severity (84.5%). However, our findings highlight negative correlations between disease activity, as measured by CAS, and patient-reported QOL outcomes. As CAS increases, QOL deteriorates, particularly as related to the visual and psychosocial functioning of affected patients. This is comparable to the findings of earlier authors.^4,5,6  Important activities of daily living, such as reading, watching TV and being hindered from something they wanted to do, were the leading limitations in terms of visual functioning of the affected patients. Changes in appearance, feeling of being stared at in the streets, need to mask their appearance, reduced self-confidence and appearing less in photos were the leading psychosocial limitations that were very much affected, similar to the findings of Smith et al⁷ and Beata et al.⁸

CONCLUSION

The study revealed that a significant proportion of TED patients exhibit disease activity, though a large number had mild disease. TED also exerted a considerable negative impact on QOL, as indicated by the high prevalence of visual and psychosocial dysfunction among the patients. It is recommended that physicians heighten awareness of these limitations and consider using CAS in conjunction with GO-QOL questionnaires to comprehensively evaluate and therefore improve the standard of care of TED patients.