Abstract
Objective Management priorities of neurologists and patients do not always align. We sought to understand the neurologist’s role from the perspective of adults living with spinal muscular atrophy (SMA).
Methods Focus groups were conducted with adults with SMA covering management expectations, assessments and treatments. Sessions were facilitated by neurologists via zoom. Groups were structured according to SMA severity. Participants were provided with a pre-session survey which sought opinions on aspects of neurological care. Results from the survey were used to initiate discussion within the focus groups. The neurologist’s role was the first discussion topic. Sessions were recorded for verbatim audio transcription. Data were explored using reflexive thematic analysis.
Results Twenty-eight adults with SMA participated (ages 25–68). There was significant variability in experiences of engagement with neurologists. Some participants had not seen a neurologist for many years, perceiving consultations to have limited benefit. Frustration was expressed at the inequity of access to neuromuscular expertise across Australia. There was consensus that neurologists have a co-ordinating role within a multi-disciplinary care team that includes the person with SMA. Multi-disciplinary clinics were preferred, although few had experienced this model of care. Participants valued consultations where their neurologist provided updates on treatments and advances and demonstrated attention to individualisation of management. In general, mental wellbeing was experienced to be either ignored or poorly managed by neurologists.
Conclusion We identified a variable disconnect between needs of adults with SMA and neurologist provided care. Further work is required to ensure equitable access to neuromuscular expertise across Australia.
