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

Abstract

Purpose

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.

Materials and methods

Thirteen Australian adults with MG participated in semi-structured interviews. Qualitative analysis was conducted inductively using thematic content analysis.

Results

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.

Conclusions

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.

Keywords:

• Myasthenia gravis
• allied health
• multidisciplinary care
• patient-centred care
• qualitative

Acknowledgements

The authors are grateful to the participants for volunteering their time and insights. The authors thank the Myasthenia Gravis Association of Queensland for supporting this research.

Disclosure statement

Author KS has myasthenia gravis and is a committee member of the Myasthenia Gravis Association of Queensland. Authors ID and KW report there are no competing interests to declare.

Data availability statement

The data that support the findings of this study are available in the supplementary material of this article.

Additional information

Funding

The authors thank the Myasthenia Gravis Association of Queensland for supporting this research.