An online survey by the British Thyroid Foundation

Dr Anna Mitchell and Dr Petros Perros, consultant endocrinologists, Newcastle upon Tyne Hospitals NHS Foundation Trust. Dr Mitchell provides a summary:

Study rationale

People who are treated for hypothyroidism quite commonly report dissatisfaction with their treatment and impaired Quality Of Life (QOL). Supported by the BTF, we aimed to gain insight into this by conducting an online survey of nearly 1000 people who told us they were receiving thyroid hormone replacement treatment for hypothyroidism.

Key findings

  • 969 responses were analysed
  • Over three quarters (77.6%) of respondents felt dissatisfied with their treatment and overall QOL scores were low.

Factors correlating with patient satisfaction

  • Patient satisfaction did not correlate with the type of thyroid hormone treatment
  • Multivariate analysis* showed that age, male gender and being under the care of a thyroid specialist all had a positive impact on patient satisfaction. Other factors which made a positive impact were having a GP willing to prescribe Desiccated Thyroid Extract (DTE) or combination of levothyroxine (L-T4) with liothyronine (L-T3) or only L-T3 and being well informed about hypothyroidism.
  • Multivariate analysis showed the following have a negative impact on patient satisfaction: a bad experience with L-T4 (usually resulting in patients regarding L-T4 as ineffective or expecting it to resolve all symptoms), expectations for more support from the GP and expectations of being referred to a thyroid specialist.

Factors correlating with patient-reported QOL

Treatment with combination L-T4 and L-T3 or with DTE was associated with significantly better reported QOL than people receiving L-T4 or L-T3 on its own. However, multivariate analysis, which took into account other clinical parameters, did not confirm an association between the type of thyroid hormone treatment and QOL.

  • Multivariate analysis showed that male gender and duration of hypothyroidism positively correlated with QOL.
  • Age, visiting the GP more than three times before receiving a diagnosis, sourcing DTE or L-T3 independently, previous negative experiences with L-T4, having expectations for L[1]T4 to resolve all symptoms and of more support from the GP all had a negative impact on QOL.

Take home messages

This survey has highlighted a high level of dissatisfaction and poor QOL amongst people treated for hypothyroidism. Given that hypothyroidism is common, this is an important area that requires further research

Bearing in mind patient interest and demand for L-T4 and L-T3 combination therapy and DTE treatments, as well as individual testimonies posted on social media that these treatments are superior to L-T4, it was surprising to find that the level of satisfaction and QOL among people receiving these treatments was no different to people who were on L-T4.

This suggests that other factors play an important role in determining the level of satisfaction with treatment and QOL of patients with hypothyroidism. In contrast age, gender, patient expectations, poor experiences with healthcare professionals and lack of information from the GP on hypothyroidism appear to have a major impact on satisfaction and QOL.

Other factors that may improve treatment satisfaction and QOL of patients with hypothyroidism are:

  • managing patient expectations at the time of diagnosis of hypothyroidism, for example, taking time to explain how long symptoms of hypothyroidism take to improve after starting treatment or explaining the need for initial dose adjustment to achieve optimal blood hormone levels.
  • establishing a better rapport between the healthcare professional and the patient and maintaining a positive therapeutic relationship.
  • providing good quality patient-centred information about hypothyroidism. To read this publication, follow this sharing link: https://bit.ly/3pKoazi

*1 Multivariate analysis is a statistical method, which looks at multiple complex relationships and tries to uncover which of these are most likely to be true. An example might be to look at a sample of individuals and try to understand what might determine height. In this example, height is measured and additional information is collected that includes sex, country of origin and diet. An initial simple statistical analysis may show that a diet rich in rice is associated with short stature. Multivariate analysis however shows that country of origin and sex are the dominant determinants and if they are taken into account diet ceases to exert an effect on height