Exploring stakeholder experiences of interprofessional teamwork in sex development outpatient clinics

Adopting an interprofessional team approach to care of the child with rare conditions that can affect sex development (DSD) has been advocated by a consensus document within the last decade. In the United Kingdom, the approach appears orientated towards an interprofessional model with the integration of separate professions working in single consultations with families working collaboratively to focus on care using a person and family-centred lens. This concurrent mixed-methods UK study using questionnaires, observation, and interviews aimed to examine professionals’, patients’, and parents’ expectations and interactions during DSD clinic. In adapting a model of patient and family-centred care, we were able to analyse the dimensions of care at the micro-, meso-, and macro-level. The micro captured the unique nature of the bio-psychosocial aspects of DSD, professional capabilities, and communication. The meso examined shared learning and objective setting as well as aspects of knowledge translation. The macro focused on the operational aspects and the emancipatory knowing embedded within DSD care. Complete data from participants (<i>n</i> = 105) were analysed from 47 outpatient clinical consultations and are reported as numerical data, tables, and participants’ voices. Interestingly, all participants identified topics or concerns that were absent in the dialogues during consultation. Our findings informed the adaptation of a patient-focused model, thereby supporting the development of the concept of patient-centeredness, integration, and collaboration. This framework may serve as a platform, embedding existing evaluative tools and acknowledging the patient and professional partnership necessary in DSD care.

近十年来，一份共识文件倡导采用多专业团队诊疗模式，为罹患可影响性发育的罕见疾病——性发育异常（disorders of sex development, DSD）的患儿提供照护。在英国，该诊疗模式倾向于采用多专业协作模型：整合不同专业人员，在单次会诊中与家属携手，以患者及家庭为中心的视角开展照护工作。本项在英国开展的混合方法同步研究，采用问卷调研、现场观察与访谈三种手段，旨在探究DSD专科门诊中专业人员、患者及家长的预期与互动情况。在借鉴以患者及家庭为中心的照护模型的基础上，我们得以从微观、中观与宏观三个维度对照护工作进行分析。微观层面聚焦DSD相关生物-心理-社会维度的独特性、专业人员的诊疗能力与沟通水平；中观层面则围绕协作学习、目标设定以及知识转化相关环节展开分析；宏观层面聚焦DSD照护中的实操环节与内嵌的解放式认知。本研究对47次门诊会诊中105名参与者的完整数据进行了分析，研究结果以数值数据、表格及参与者口述内容的形式呈现。值得关注的是，所有参与者均指出了会诊对话中未被提及的话题与顾虑。本研究结果为以患者为中心的诊疗模型优化提供了依据，进而助力以患者为中心、多专业整合与协作理念的发展。该框架可作为依托平台，整合现有评估工具，并认可DSD照护中不可或缺的患者与专业人员伙伴关系。