Endocrine Abstracts (2006) 11 P848

Towards the development of a valid quality of life questionnaire for patients with thyroid diseases: Which questions shall we ask?

T Watt1, M Groenvold2, AK Rasmussen1, SJ Bonnema3, L Hegedüs3, JB Bjorner4 & U Feldt-Rasmussen1

1Rigshospitalet, Copenhagen, Denmark; 2University of Copenhagen, Copenhagen, Denmark; 3Odense University Hospital, Odense, Denmark; 4QualityMetric Inc, Lincoln, RI, United States.

Background and aim: In clinical populations, generic quality of life (QoL) questionnaires should be supplemented with disease-specific questionnaires, which may have higher sensitivity and clinical relevance. For the purpose of developing a comprehensive thyroid QoL questionnaire, we have evaluated the relative importance of various QoL aspects to thyroid patients.

Methods: A list of problems (issues) related to thyroid diseases, previously identified through literature review and expert-interviews, was presented to 80 outpatients with treated and untreated thyroid disease (n: non-toxic goiter 15, nodular toxic goiter 12, Graves’ 21, TAO 17, autoimmune hypothyroidism 15). For each issue, the patients indicated whether they had experienced it at any time during their disease and rated the importance. An importance score was derived by multiplying prevalence and importance. For each patient category, the 15 most important issues were included.

Results: Forty-three issues were included, covering aspects of fatigue, anxiety, emotional susceptibility, cognitive complaints, cosmetic concerns and symptoms related to hyper- or hypothyroidism, eyes or goiter. Thus, there was an extensive overlap across diagnoses: General fatigue was among the 15 most important in all patient groups and 42% of the 43 issues were selected by more than one patient group. The five most important issues overall were general fatigue (mean rank 7.7), dyspnea (8.0), feeling of unrest (11.0), reduced coping (11.3) and physical fatigue (11.9).

Conclusion: Fatigue was very important and various aspects of mental well-being were as important as symptoms of thyroid disease. The level of agreement across patient groups was high. Therefore, developing a comprehensive thyroid QoL questionnaire encompassing all thyroid diseases seems preferable. This would also be advantageous in longitudinal studies, where thyroid state may shift. Based on these ratings, and similar ratings from endocrinologists, such a questionnaire is being developed and tested among 2000 Danish and American patients.

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