Long-term effects of Graves' ophthalmopathy on health-related quality of life

Abstract

Objective: Little is known about the long-term effects of Graves' ophthalmopathy (GO) on healthrelated quality of life (HRQL) after the eye treatment is considered to be finished. The aim of this study was to quantify these effects using validated HRQL questionnaires. Design: A cross-sectional follow-up study was carried out in GO patients who had started radiotherapy and/or prednisone treatment between 1982 and 1992. Methods: Between 1998 and 2000 these patients received an HRQL questionnaire containing the SF-36, EuroQol and GO-QOL questionnaires. All patients were invited for a follow-up ophthalmological examination. HRQL scores of the respondents were compared with those of two reference populations of 'healthy' persons and to scores of several other GO populations. Results: One hundred and sixty-eight patients were included; 163 completed the HRQL questionnaire and 154 visited the outpatient clinic. The median follow-up was 11.7 years. A considerable number of symptoms related to GO were found. More than half of the patients had diplopia and 28% had a low visual acuity. Sixty per cent had a proptosis of at least 20 mm. The HRQL scores were considerably better than those of newly diagnosed GO patients (untreated) and GO patients who completed the questionnaire during treatment, but worse than those of 'healthy' persons. Although we did not perform a longitudinal study, we included a selected group of patients who had been treated with radiotherapy and/or prednisone in the Academic Medical Centre of the University of Amsterdam, and though we could not assess HRQL at comparable times after receiving treatment, this is the first study that presents any data on the long-term effects of GO on HRQL. Conclusion: GO has a marked negative effect on HRQL, even many years after treatment. These findings suggest that GO should be considered a chronic disease. Aftercare is needed for these patients after their immunosuppressive and surgical treatments.

Does thyroid surgery for Graves’ disease improve health-related quality of life?

“…As a result, our findings may not be fully comparable with those of other studies. However, the lack of a questionnaire that assesses the psychological status, as well as the general, clinical and psychosocial aspects of GD in all its complexity, as well as the response to medical and/or surgical treatment, is acknowledged in the international literature [2,18,28]. Surprisingly, our results showed that none of the patient characteristics were significantly associated with a higher HRQOL impairment after surgery.…”

“…Based on the most frequently observed symptoms and questionnaires found in the international literature (Medical Outcomes Study-24 questionnaire [13]; Short Form-36 questionnaire [14]; EuroQol VAS Questionnaire [15]; National Eye Institute Visual Function Questionnaire [16]; Profile of Mood States [17]; Graves' ophthalmopathy Quality of Life Questionnaire-GOQOL [18]), we developed a questionnaire to measure the HRQOL in patients who had undergone total thyroidectomy for GD. Many of the questions included in our questionnaire were derived from these previously cited studies and were thus considered to be validated.…”

The patient experience of services for thyroid eye disease in the United Kingdom: results of a nationwide survey

“…TED has the potential to cause facial disfigurement and/or visual deficits, impacting on employment, hobbies and self-confidence, and frequently leading to a withdrawal from social interactions. Several previous studies have demonstrated a marked reduction in the quality of life of patients with TED as compared to the general population and patients with other chronic diseases (3)(4)(5)(6), to a degree that is often underappreciated by healthcare professionals.…”

Auto-estima na forma inativa da oftalmopatia de Graves

“…Vários grupos relataram alterações na qualidade de vida dos pacientes com OG tanto nos aspectos físicos como emocionais (3,23) . Sintomas como depressão, ansiedade e estresse relacionados a atividades sociais e de trabalho estão presentes em grande parte dos indivíduos, embora a OG esteja às vezes camuflada em formas de apresentação que podem não parecer graves ao médico (2,24) .…”

“…Escores menores que três significam oftalmopatia em fase não inflamatória (Tabela 1). Para avaliar as alterações oculares da doença de Graves utilizou-se a classificação "NOSPECS", que permitiu distribuir os pacientes portadores de OG em três categorias: leve ("NOSPECS" 2a, 30-a, 40-a), moderada/grave ("NOSPECS" 2b, 3bc, 4bc) e grave ("NOSPECS" 5bc, 6a-c) (Tabela 2) (21,23) .…”