An interprofessional clinic for adults with Turner syndrome: the patient perspective

Abstract

Objectives

This qualitative study assessed the value of a primary care-based interprofessional clinical team for adults with Turner syndrome (TS) utilizing patient perspectives.

Methods

Ten patients within one institution’s interprofessional adult TS clinic participated in one of two semi-structured focus groups. Content analysis was used to classify content provided by participants into themes and sub-themes using Dedoose software.

Results

Participants found that their quality of care and life were both improved due to the presence of the interprofessional Adults with TS Clinic. Specifically, participants reported that the clinic helped address problems with finding knowledgeable providers and care gaps, made appointments more convenient and improved interprofessional communication. Participants also reported that the clinic helped them find a sense of community and increased personal confidence. Study participants suggested improvements to the clinic by expanding the scope of practice further, simplifying processes to schedule appointments, and potentially creating interprofessional clinics for other rare diseases as well.

Conclusion

Pursuing avenues to create interprofessional clinics for adults with rare diseases has value from the patient perspective. This value can translate to improved patient outcomes through improvements in patient knowledge of their diagnosis, adherence to evidence-based care and quality of life.

摘要

目的：这个定性研究利用患者视角评估基于成人特纳综合征（TS）初级保健的多学科临床团队价值。

方法：同一机构多学科成人TS门诊的10名患者参加了两个半结构化焦点小组中的一个。使用Dedoose软件进行内容分析, 将参与者提供的内容分为主题和子主题。

结果：参与者认为, 得益于多学科成人TS门诊的存在, 保健和生活的质量均得到了改善。参与者报告, 多学科门诊通过寻找专业人士和保健缺口帮助患者确定问题的根源, 使预约更方便, 并改善了学科间的沟通。多学科门诊帮助他们找到了团队, 并增加了自信。研究的参与者提出了一些改进意见, 如进一步扩大实践范围, 简化预约流程, 以及为其他罕见病多学科门诊的建立创造可能。

结论：建立成人罕见病多学科门诊, 从患者的视角而言是有价值的。这一价值通过提高患者对诊断的认识、坚持循证保健和改善生活质量, 转化为患者预后的改善。

Keywords:

• Turner syndrome
• interprofessional
• patient perspective
• rare diseases
• qualitative study

Acknowledgements

The authors thank the study participants for participation in the focus groups.

Potential conflict of interest

Dr Kelly and Dr Malhotra were clinicians within the Turner syndrome clinic at the institution; however, they did not participate in the focus groups. The authors do not have other conflicts of interest to report. The authors alone are responsible for the content and writing of this article.

Source of funding

Nil.