Suárez, Nataly R. Espinoza

Background and objectives: It is unclear why many patients with hypothyroidism prefer the use of desiccated thyroid extract (DTE) as a thyroid hormone replacement formulation over levothyroxine (LT4) treatment, as recommended by clinical practice guidelines. We analyzed patient-reported information from patient online forums to better understand patient preferences for and attitudes toward the use of DTE to treat hypothyroidism. Materials and Methods: We conducted a mixed-methods study by evaluating the content of online posts from three popular hypothyroidism forums from patients currently taking DTE (n = 673). From these posts, we extracted descriptive information on patient demographics and clinical characteristics and qualitatively analyzed posts’ content to explore patient perceptions on DTE and other therapies further. Results: Nearly half (46%) of the patients reported that a clinician initially drove their interest in trying DTE. Patients described many reasons for switching from a previous therapeutic approach to DTE, including lack of improvement in hypothyroidism-related symptoms (58%) and the development of side effects (22%). The majority of patients described DTE as moderately to majorly effective overall (81%) and more effective than the previous therapy (77%). The most frequently described benefits associated with DTE use were an improvement in symptoms (56%) and a change in overall well-being (34%). One-fifth of patients described side effects related to the use of DTE. Qualitative analysis of posts’ content supported these findings and raised additional issues around the need for individualizing therapy approaches for hypothyroidism (e.g., a sense of each patient has different needs), as well as difficulties obtaining DTE (e.g., issues with pharmacy availability). Conclusions: Lack of individualized treatment and a feeling of not been listened to were recurrent themes among DTE users. A subset of patients may prefer DTE to LT4 for many reasons, including perceived better effectiveness and improved overall well-being, despite the risks associated with DTE.

Objectives: Research indicates that the increasing population of over 25 million people in the United States who have limited English proficiency experience differences in decision-making and subsequent care at end of life in the ICU when compared with the general population. The objective of this study was to assess the perceptions of healthcare team members about the factors that influence discussions and decision-making about end of life for patients and family members with limited English proficiency in the ICU. Design: Qualitative study using semistructured interviews with ICU physicians, nurses, and interpreters. Setting: Three ICUs at Mayo Clinic Rochester. Subjects: Sixteen ICU physicians, 12 ICU nurses, and 12 interpreters. Intervention: None. Measurements and Main Results: We conducted 40 semistructured interviews. We identified six key differences in end-of-life decision-making for patients with limited English proficiency compared with patients without limited English proficiency: 1) clinician communication is modified and less frequent; 2) clinician ability to assess patient and family understanding is impaired; 3) relationship building is impaired; 4) patient and family understanding of decision-making concepts (e.g., palliative care) is impaired; 5) treatment limitations are often perceived to be unacceptable due to faith-based and cultural beliefs; and 6) patient and family decision-making styles are different. Facilitators of high-quality decision-making in patients with limited English proficiency included: 1) premeeting between clinician and interpreter; 2) interpretation that communicates empathy and caring; 3) bidirectional communication of cultural perspectives; 4) interpretation that improves messaging including appropriate word choice; and 5) clinician cultural humility. Conclusions: End-of-life decision-making is significantly different for ICU patients with limited English proficiency. Participants identified several barriers and facilitators to high-quality end-of-life decision-making for ICU patients and families with limited English proficiency. Awareness of these factors can facilitate interventions to improve high-quality, compassionate, and culturally sensitive decision-making for patients and families with limited English proficiency.