Endocrine Abstracts

Objective: During the development of a thyroid-specific quality of life (QoL) questionnaire, patients and clinicians rated the relative relevance of a list of possibly relevant QoL issues. In this study we compare the patient and clinician ratings.

Methods: Fifteen thyroid experts and 80 thyroid outpatients (14 with non-toxic goitre, 12 nodular toxic goitre, 21 Graves’ disease, 17 thyroid associated ophthalmopathy (TAO) and 16 primary hypothyroidism) were interviewed, using semi-structured interviews.

The relevance of 138 thyroid disease related issues was rated. Patients’ rating of importance was combined with prevalence of the issue in question to calculate a mean relevance rank for each patient category. Experts rated the relevance directly. Patient and expert relevance ratings were compared using nonparametric correlation. To explore the (dis-)agreement in greater detail, the 15 issues considered most relevant by the patients were compared to the 15 issues considered most relevant by the clinicians.

Results: The Spearman correlations between patient and expert ratings were: Graves’ disease 0.69, TAO 0.48, toxic nodular goitre 0.60, non-toxic goitre 0.35 and primary hypothyroidism 0.46 (P<0.0001 for all coefficients). This corresponds to substantial agreement regarding Graves’ disease, moderate agreement about TAO, toxic nodular goitre and primary hypothyroidism and only fair agreement in non-toxic goiter.

For most disease categories, less than half of the 15 issues considered most relevant by the patients were also among the 15 most relevant to clinicians. Generally, issues among the 15 most relevant according to clinicians only were physical symptoms characteristic of the diagnosis in question. Issues among the 15 most relevant according to patients only were generally non-physical aspects of HRQL such as emotional susceptibility and nervousness as well as general physical symptoms.

Conclusions: When evaluating possibly relevant QoL-issues, clinicians focused more on specific symptoms, whereas patients focused more on emotional, mental and social aspects of QoL.