What Matters Most to Patients With Thyroid Dysfunction in Malaysia: A Preliminary Qualitative Analysis

Abstract Background: Relatively little is known on the aspects of research that matter most to patients with thyroid dysfunction (TD). We aimed to explore the patients’ experience when they were diagnosed and treated for TD, as well as what they needed to improve their care: Methods: Qualitative data were obtained online using the Malay language version of the semi-structured qualitative survey in Malaysia, part of the larger research: A CORE OUTCOME SET FOR THYROID DYSFUNCTION. The questionnaires were developed from interactive discussions with patients who have thyroid dysfunction. The responses were analyzed using Braun and Clark’s thematic analysis framework guided by the question: What are the perceptions and experiences of thyroid care that matter most to patients with TD? Results: Responses from 38 participants, in the 18-60 age range, with TD, were analyzed. Most patients across the spectrum of thyroid dysfunctions experienced emotional disturbances. These negative emotions were related to the whole spectrum of disease state, the associated treatments, pre-treatment, post-treatment care, and personal aspects of daily life. Uncertainties in medical outcomes were associated with the personal need for further information. Functional psychosocial impairments and socioeconomic disruptions have a strong ability to arouse the anxiety of outcome uncertainties further. Getting treatment and independence in routine daily activities were prioritized while acknowledging treatments may differ in modality and risk of complications. Physician-patient interactions were valued in alleviating concerns and fear. Four salient themes emerged suggesting emotional security, functional ability, self-care (including psychosocial and socioeconomic well-being), and quality of physician-patient relationships were what matters to these participants. Conclusion: This insight into the problems of patients with TD underlined the need for quality patient-centered thyroid care and may be enhanced, personalized, and improved through outcomes that mattered most to patients in clinical research/trials, routine clinical practice, and the health system.