Fragmented care and missed opportunities: the experiences of adults with myasthenia gravis in accessing and receiving allied health care in Australia

Although allied health services are important adjuncts to medical care for people with myasthenia gravis (MG), the underutilisation of these services is not well understood within the Australian context. It is critical to explore patients' perceptions to develop services that meet consumer needs. This study, therefore, sought to obtain insight into MG patients’ perspectives and experiences, in addition to the outcomes, of accessing allied health services.
Thirteen Australian adults with MG participated in semi-structured interviews. Qualitative analysis was conducted inductively using thematic content analysis.
Four themes were identified: (1) missed opportunities and unmet care needs were common, due to frequent patient–provider communication breakdowns and a lack of referral protocols, (2) personal factors – patient self-advocacy influenced their perceived need, with some lacking confidence to seek help, (3) perceived benefit and health provider capacities – most valued allied health despite differing perceptions of health professionals’ attitudes, skills, and willingness to learn, and (4) a resultant fragmentation of care between services was universal.
Findings highlighted a need for clear referral pathways, coordinated multidisciplinary care, improved access to community-based services and education for allied health professionals about MG.Implications for rehabilitation
Adults with myasthenia gravis (MG) report a lack of referral pathways to allied health services, leading to unmet needs and fragmented care.
Although there is a perceived benefit to allied health care, experiences are impacted by health provider capacity and attitudes.
There needs to be an overall shift towards multidisciplinary care for people with MG, and the development of clear referral pathways.
Specific education about MG should be available for allied health professionals to improve their knowledge and skills in treating this population.

Adults with myasthenia gravis (MG) report a lack of referral pathways to allied health services, leading to unmet needs and fragmented care.
Although there is a perceived benefit to allied health care, experiences are impacted by health provider capacity and attitudes.
There needs to be an overall shift towards multidisciplinary care for people with MG, and the development of clear referral pathways.
Specific education about MG should be available for allied health professionals to improve their knowledge and skills in treating this population.

尽管辅助医疗服务（allied health services）是重症肌无力（myasthenia gravis, MG）患者临床诊疗的重要辅助手段，但在澳大利亚语境下，此类服务的利用不足问题仍未得到充分阐释。为开发贴合患者需求的服务，探究患者的认知至关重要。因此，本研究旨在深入了解重症肌无力患者在获取辅助医疗服务过程中的体验、看法与服务结局。
本研究共招募13名澳大利亚成年重症肌无力患者参与半结构化访谈，采用归纳式主题内容分析法开展质性分析。
研究共识别出四大主题：① 因医患沟通频繁中断及转诊规范缺失，错失诊疗时机与未被满足的照护需求普遍存在；② 个人层面因素：患者自我倡导（self-advocacy）会影响其对照护需求的认知，部分患者缺乏寻求帮助的信心；③ 感知获益与医疗服务提供者能力：尽管患者对医疗专业人员的态度、专业技能及学习意愿存在不同看法，但多数患者仍认可辅助医疗服务的价值；④ 各服务体系间最终出现的照护碎片化问题普遍存在。
研究结果显示，亟需建立清晰的转诊路径、协调化多学科照护模式，优化社区医疗服务可及性，并为辅助医疗从业者提供重症肌无力相关专项培训。
康复领域启示
成年重症肌无力患者反映，其获取辅助医疗服务的转诊路径缺失，进而导致照护需求未被满足与照护碎片化。
尽管患者普遍认可辅助医疗的获益，但服务体验仍受医疗提供者能力与态度的影响。
重症肌无力患者的照护需整体转向多学科模式，并建立清晰的转诊路径。
应为辅助医疗从业者提供重症肌无力专项培训，以提升其针对该人群的诊疗知识与技能。
成年重症肌无力患者反映，其获取辅助医疗服务的转诊路径缺失，进而导致照护需求未被满足与照护碎片化。
尽管患者普遍认可辅助医疗的获益，但服务体验仍受医疗提供者能力与态度的影响。
重症肌无力患者的照护需整体转向多学科模式，并建立清晰的转诊路径。
应为辅助医疗从业者提供重症肌无力专项培训，以提升其针对该人群的诊疗知识与技能。