Design of new questionnaires to measure quality of life and treatment satisfaction in hypothyroidism

Introduction: This paper reports work undertaken to design two new condition-specific questionnaires for use in hypothyroidism: the Underactive Thyroid-Dependent Quality of Life Questionnaire (ThyDQoL) and the Underactive Thyroid Treatment Satisfaction Questionnaire (ThyTSQ). Methods: Semi-structured interviews exploring quality of life (QoL) and experiences of treatment were conducted with 30 women and 8 men with hypothyroidism, (mean age 51.9, range 29-79 years), 37/38 treated with thyroxine, recruited from hospital clinics and primary care. Results: Despite thyroxine treatment, most interviewees reported negative impact of hypothyroidism on QoL, particularly on energy, physical capabilities, motivation, physical appearance and weight. The newly designed ThyDQoL has 18 domains covering these and other aspects of life affected by hypothyroidism. It is an individualised measure of patients' perceived impact of hypothyroidism on their QoL, which takes into account the importance of personally applicable life domains to the patient. A 7-item measure of satisfaction with current treatment was designed (ThyTSQ-Present) but interviews also indicated the need for seperate 4-item section measuring satisfaction with past treatment around the time of diagnosis (ThyTSQ-Past). Conclusions: The ThyDQoL and ThyTSQ questionnaires have good face validity and content validity for adults with hypothyroidism. They are now ready for use in clinical research and psychometric evaluation