Health Psychology Section, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, UK.
Neuroscience Section, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, UK.
Br J Health Psychol. 2024 May;29(2):297-316. doi: 10.1111/bjhp.12700. Epub 2023 Oct 16.
Postural orthostatic tachycardia syndrome (POTS) is a debilitating and under-recognized condition of the autonomic nervous system. This study applied Leventhal's Common-Sense Model of Illness Representations to explore the journey to a diagnosis of POTS and to understand its relevance to poorly understood conditions which have common comorbidities.
An inductive qualitative approach was used to explore the processes by which patients formulate explanations and management of symptoms within the search for a diagnostic label and to investigate illness identity in the context of existing diagnoses or multimorbidity.
Participants (n = 29) for this nested qualitative study were recruited from a larger longitudinal study of people who had been newly referred to a specialist POTS service. Semi-structured interviews were conducted via video call. Three researchers coded and analysed data using Reflexive Thematic Analysis and elements of Grounded Theory.
The analysis resulted in three overarching themes: 'Seeking physiological coherence and validation', 'Individual persistence', and 'Navigating the cumulative burden'. 'Accessibility and disparities of health care' was noted as a contextual factor. Receiving a POTS diagnosis was regarded by participants as providing legitimacy and increased access to treatment. Overall, delays in the diagnostic journey and the lack of a clear diagnosis impacted negatively on patients through increased uncertainty and a lack of clear guidance on how to manage symptoms. Findings also suggested there were great complexities in assigning symptoms to labels in the context of multimorbidity.
Participants' stories highlighted the urgent need for better recognition of POTS so that the self-regulatory process can be initiated from the early stages of symptom detection.
体位性心动过速综合征（POTS）是一种衰弱且未被充分认识的自主神经系统疾病。本研究应用莱文特尔的疾病认知综合模型来探索诊断 POTS 的过程，并了解其与具有共同合并症的未被充分认识的疾病的相关性。
采用归纳性定性方法，探索患者在寻求诊断标签的过程中对症状进行解释和管理的过程，并在现有诊断或合并症的背景下研究疾病认同。
本嵌套定性研究的参与者（n=29）从一项新转诊至专家 POTS 服务的人群的更大纵向研究中招募。通过视频通话进行半结构式访谈。三名研究人员使用反思性主题分析和扎根理论的元素对数据进行编码和分析。
分析产生了三个总体主题：“寻求生理一致性和验证”、“个体坚持”和“应对累积负担”。“医疗保健的可及性和差异”被认为是一个背景因素。获得 POTS 诊断被参与者视为提供合法性和增加治疗机会。总体而言，诊断过程中的延迟和缺乏明确诊断对患者产生了负面影响，增加了不确定性，并且缺乏关于如何管理症状的明确指导。研究结果还表明，在合并症的背景下，将症状分配到标签上存在很大的复杂性。
参与者的故事强调了迫切需要更好地认识 POTS，以便从症状检测的早期阶段就开始自我调节过程。
