Patient satisfaction and quality of life in hypothyroidism: An online survey by the british thyroid foundation

Abstract

Objective Dissatisfaction with treatment and impaired quality of life (QOL) are reported among people with treated hypothyroidism. We aimed to gain insight into this. Design and patients We conducted an online survey of individuals with self‐reported hypothyroidism. Results Nine hundred sixty‐nine responses were analysed. Dissatisfaction with treatment was common (77.6%), and overall QOL scores were low. Patient satisfaction did not correlate with type of thyroid hormone treatment, but treatment with combination levothyroxine (L‐T4) and liothyronine (L‐T3) or with desiccated thyroid extract (DTE) was associated with significantly better reported QOL than L‐T4 or L‐T3 monotherapies (P < .001); however, multivariate analysis inclusive of other clinical parameters failed to confirm an association between type of thyroid hormone treatment and QOL or satisfaction. Multivariate analysis showed positive correlations between satisfaction and age (P = .026), male gender (P = .011), being under the care of a thyroid specialist (P < .001), family doctor (GP) prescribing DTE or L‐T4 + L‐T3 or L‐T3 (P < .001) and being well informed about hypothyroidism (P < .001); negative correlations were observed between satisfaction and negative experiences with L‐T4 (P < .001) and expectations for more support from the GP (P < .001), for L‐T4 to resolve all symptoms (P = .004), and to be referred to a thyroid specialist (P < .001). For QOL, positive correlations were with male gender (P = .011) and duration of hypothyroidism (P = .002); negative correlations were with age (P = .027), visiting the GP more than 3 times before diagnosis (P < .001), sourcing DTE or L‐T3 independently (P = .014), negative experiences with L‐T4 (P = .013), having expectations for L‐T4 to resolve all symptoms (P < .001) and of more support from the GP (P = .006). Conclusions Multiple parameters including prior healthcare experiences and expectations influence satisfaction with hypothyroidism treatment and QOL. Focusing on enhancing the patient experience and clarifying expectations at diagnosis may improve satisfaction and QOL.

Health-Related Quality of Life in Levothyroxine-Treated Hypothyroid Women and Women without Hypothyroidism: A Case–Control Study

“…In the same way, Mitchell et al observed that patients treated with DET or an LT3/LT4 combination showed better QOL than patients with LT4 monotherapy. Nevertheless, these differences disappeared when introducing other elements in the analysis (prior healthcare experiences and expectations on treatment) [57]. This study suggested that improving the patient experience and clarifying expectations at diagnosis could improve satisfaction and quality of life [57].…”

“…Nevertheless, these differences disappeared when introducing other elements in the analysis (prior healthcare experiences and expectations on treatment) [57]. This study suggested that improving the patient experience and clarifying expectations at diagnosis could improve satisfaction and quality of life [57]. Several studies have researched the effect of the LT3/LT4 combination instead of LT4 monotherapy; however, although some patients prefer the LT3/LT4 combination, the evidence does not conclusively show a clear benefit of this combined therapy [5,18].…”

Recent evidence sets therapeutic targets for levothyroxine-treated patients with primary hypothyroidism based on risk of death

“…The ATA guidance about the lower limit of TSH is complex and the message not easy to communicate. A widespread belief among hypothyroid patients is that a low TSH of no consequence, hence selfadjustment of thyroid hormone dose based on symptoms (which often leads to over-replacement) is perceived as being safe (1,2).…”

“…Many hypothyroid patients use the internet as a major source of information about their diagnosis (1,2). They soon become aware that there are heated controversies and an apparent divide between some patient groups and endocrinologists.…”

“…Conventional endocrine practice is challenged by a vocal minority of patients and some 'experts' who purport that the diagnosis should be made based on symptoms and a thermometer, that levothyroxine (L-T4) is generally ineffective or should be combined with liothyronine (L-T3), or substituted with animal thyroid extract. Various supplements, diets and alternative treatments are also promoted, and patients are advised that the therapeutic target is relief of symptoms, often through self-medication, titrated and varied according to symptoms, if necessary on a daily basis (1,2). The evidence base for these views is patient testimonies.…”