Which domains of thyroid-related quality of life are most relevant? Patients and clinicians provide complementary perspectives.

OBJECTIVE

To identify how thyroid diseases impact the patients' lives and to select the most relevant quality of life (QoL) issues for a thyroid-specific questionnaire.

DESIGN

Fifteen thyroid experts and 80 thyroid outpatients (14 with nontoxic goiter, 12 nodular toxic goiter, 21 Graves' disease, 17 thyroid-associated ophthalmopathy, and 16 primary hypothyroidism) were interviewed.

METHODS

The relevance of 138 thyroid disease-related issues was rated during interviews. For each issue, three relevance measures were obtained: a diagnosis-specific patient rating, a diagnosis-specific expert rating, and a combined overall patient/expert rating. The 75 most relevant issues overall and the 15 most relevant issues in each patient category were selected.

RESULTS

Based on the above, 92 issues were selected, covering a broad range of clinical and QoL domains. Across patient groups, broader QoL domains were most relevant, especially fatigue and emotional susceptibility. However, when focusing on individual patient groups, diagnosis-related physical symptoms were very relevant too. Patients rated issues about psychosocial problems and impact on daily life as more relevant, whereas clinicians focused on thyroid-characteristic issues.

CONCLUSIONS

A broad range of QoL issues and physical symptoms are relevant for thyroid patients, particularly fatigue and emotional susceptibility. Patients and clinicians offer complementary perspectives on relevance.