Enhancing the Patient Voice: Quality of Life,Satisfaction,and Preference During Treatment of Hypothyroidism

Satisfactory treatment of chronic diseases can be challenging for a number of reasons, including widespread manifestations of the disease, difficulties with adherence to therapy, the burden of a chronic disease, quality of interaction with the relevant health care provider, and lack of perfectly targeted therapy. A condition in which this is particularly true is hypothyroidism. ^1,2 Further accentuating treatment difficulties are the protean effects of thyroid hormone deficiency, with no cell type or organ system left uninfluenced by the effects of thyroid hormone. ³

The traditional mainstay for monitoring hypothyroidism therapy is biochemical measures of thyroid function, including thyroid stimulating hormone, free thyroxine, and total triiodothyronine measurements. ¹ Most clinicians are familiar with treated hypothyroid patients who have within-range thyroid function test results, but are dissatisfied with their therapy. ⁴ In addition to assessment of success of therapy being based on biochemical and physical parameters, patient-reported outcomes (PROs) examining quality of life (QOL) and symptoms, patient satisfaction, and patient preference for therapy may be used to judge efficacy of therapy. ^5,6

A range of validated thyroid-related PROs have been used to assess QOL ^7,8 and treatment satisfaction ^9,10 in patients with hypothyroidism. However, there are currently not well-established measures for assessing patient preference for therapy in a thyroid-specific manner. Reports of a patient's thyroid status that are directly expressed by the patient, such as the measures described earlier, may be helpful for refining hypothyroidism therapy with improvement in patient outcomes.

In the article by Perros et al. in this issue of Thyroid, ¹¹ the authors examined patient experiences with their therapy for hypothyroidism utilizing a survey drawing its components from three sources: the short version of the ThyPRO39 measure for QOL, ¹² somatic symptoms from the Patient Health Questionnaire 15, ^13,14 and the Picker question bank. ¹⁵

In addition to gathering demographic data, details about diagnosis and treatment of hypothyroidism, comorbidities and physical activity from patients, the areas probed included persistent symptoms and perceived underlying causes, experiences with their health care team, impact of hypothyroidism on everyday living, personality traits, and use of internet and social media for gaining access to information on hypothyroidism. Experiences with the health care team were explored in detail and included confidence and trust in the health care provider, appraisal of the provider knowledge of hypothyroidism, time allocated to health care, participation in decision making, and overall satisfaction with treatment of hypothyroidism.

The survey was administered to an international population of patients with hypothyroidism using promotion through Thyroid Federation International harnessing its affiliates, partners, social media, and web pages, and also utilizing sponsorship by IBSA Institut Biochimique SA. This cross-sectional survey, aptly named E-MPATHY, resulted in 3915 responses from 68 countries and the results were subject to multilevel regression modeling. ¹¹ Although the inherent limitations of survey methodology need to be considered, the results of this analysis are intriguing as they not only confirm some prior observations, but also generate results that differ from other previous findings.

The type of treatment for hypothyroidism (levothyroxine alone vs. combination therapies) was not associated with patient satisfaction. This is in contradistinction to a previous survey-based study in the United States, ¹⁶ which showed greater satisfaction with combination therapies, and in particular desiccated thyroid extract, but in keeping with the results of a survey conducted in the United Kingdom. ¹⁷ Such analyses of patient satisfaction with therapy are made more complex by the inherent difficulty in determining whether residual symptoms are thyroid related or related to other aspects of life style and coexistent conditions. ³

However, the investigators found that the health care team interaction with the patient was strongly associated with satisfaction with treatment. This finding was also confirmed in the earlier surveys conducted in the United States ¹⁶ and the United Kingdom. ¹⁷ In the former study ¹⁶ patients who changed physicians twice or more were more likely to be dissatisfied with their hypothyroidism treatment. In addition, patients taking combination therapy, whether synthetic or natural, were more likely to be satisfied with their physician. Regardless of their therapy, patients judged their lives to be profoundly affected by hypothyroidism. ¹⁶

In the latter study, ¹⁷ satisfaction with therapy was associated with being under the care of a thyroid specialist or a physician prescribing combination therapy. Dissatisfaction with therapy was associated with expectations of greater support from the physician and expectations of being referred to a thyroid specialist. The importance of the physician–patient relationship was also highlighted in a recent survey exploring “brain fog” in patients with hypothyroidism. ¹⁸ The finding that various aspects of a patient's interaction with their physician and health care team affected QOL and patient satisfaction is encouraging, as this holds the promise that enhancements in these relationships could have a positive impact on hypothyroidism therapy.

Each of these studies have limitations based on their methodology. Surveys are subject to ascertainment bias with such collection tools being more likely to sample the outer bounds of the spectrum of opinions. It might also be hypothesized that those who have poor QOL or are dissatisfied with their treatment may be most desirous of sharing their views and experiences. Different results could potentially be obtained if those with positive and ambivalent experiences of their therapy were as willing to respond to a survey as those who had lower QOL or were highly dissatisfied with their therapy. These studies will hopefully motivate clinical researchers to conduct future high-quality trials that are specifically designed to study patient QOL, satisfaction, and preferences in a way that does not leave thyroidologists reliant only on data from surveys with self-selected respondents.

The American Thyroid Association's clinical practice guidelines for treatment of hypothyroidism were published in 2014, ¹ and a new taskforce charged with revising these guidelines will be convened shortly. This taskforce will incorporate patients among their panel members, a practice that has been recognized as being of critical importance. ^19,20 Several areas will especially be in need of updating. Important among these is “enhancing the patient voice” and ensuring that the patient voice informs guideline recommendations. Not only will the writing group encounter the challenge of incorporating considerations of patient QOL, satisfaction, and preference into their deliberations, but also any research gaps that are highlighted by their systematic literature reviews will serve to encourage future research into these critical PROs. The current article by Perros et al. ¹¹ serves as a timely and persuasive reminder of the importance of not losing sight of the patient perspective.