Vestibular migraine: a challenging illness to live with and to manage: a qualitative study of patients’ and specialists’ perspectives

Abstract

Vestibular migraine (VM) is one of the most common causes of recurrent vertigo with significant effects on patients’ health-related quality of life measures and psychological well-being. It is widely accepted that VM is associated with a range of diagnostic and management challenges for practitioners, predominantly due to the lack of a gold standard diagnostic test and absence of a preferred drug of choice. Consequently, the existing literature is mostly focused on optimising the diagnostics and treatment protocols. Yet, little is known about the therapeutic needs of those who suffer from VM and health professionals’ strategies in providing care beyond medication. This doctoral thesis addresses these gaps in knowledge in two ways: first, by exploring the experiences of vestibular migraineurs in their daily lives and in the management of their condition; second, by juxtaposing these experiences with an exploration of vestibular specialists’ (VSs) perspectives on the management and care of people with VM.

This thesis entailed three phases. In Phase A, a preliminary observation of several vestibular migraineurs’ appointments with VSs was conducted to inform the overall direction of the thesis and to fine-tune the research questions. Phase B adopted a qualitative descriptive method across two consecutive studies. In Study 1, 11 adults with VM were interviewed. This study was informed by the preliminary observation in Phase A and explored two aims: 1a) vestibular migraineurs’ lived experiences and therapeutic needs, 1b) vestibular migraineurs’ experiences with healthcare professionals (HCPs). The findings are visually presented in two models: The first model describes participants’ perceptions of living with VM. In this model, VM is depicted as a ‘wall’ to represent participants’ perception of living with extensive functional and psychosocial restrictions. The individual is presented at the centre, surrounded by six aspects of life (i.e., lifestyle, occupation, personal life, self-sufficiency, social network and self-image) and encircled by VM. Hopelessness and isolation are presented adjacent to the VM ‘wall’ to highlight the psychological effects of a restricted life. The second model is a map of vestibular migraineurs’ journeys from symptom presentation to diagnosis/symptom control. This map illustrates the experiences of vestibular migraineurs with different HCPs and represents the convoluted, long and often frustrating journey that patients embark on to find a diagnosis and, possibly, some level of symptom control. This model shows that vestibular migraineurs’ journeys often entail multiple misdiagnoses, dismissals and irrelevant referrals, particularly when patients seek medical advice from general practitioners (GPs). This experience often leads to frustration and loss of trust towards primary care physicians. By contrast, participants depicted a more positive, trusting experience when seeing VSs. Compared to GPs, patients often perceived VSs as more knowledgeable and competent in managing their illness, largely because VSs acknowledged the severity of their illness and did not dismiss them.

Vestibular migraineurs’ satisfaction with VSs provided a rationale for exploring these practitioners’ perspectives. The purpose was to elucidate the source of patients’ higher levels of satisfaction and to explore the clinical strategies that VSs adopted in managing VM. Study 2 explored the perspectives of 10 VSs on two topics: 2a) the complexities of VM management and 2b) the features of optimum VM care. VSs were recruited from several fields of balance disorder management including neuro-otology, vestibular audiology, vestibular physiotherapy, and ear, nose and throat surgeons. The outcomes are depicted in two models. The first model illustrates the multidimensionality of complexities posed by VM, indicating that VM is a complex illness to manage due to three factors: 1) scientific ambiguities, 2) patient-related challenges and 3) professional challenges. The second model proposes a framework for VM quality management: ‘SAIPHE’. SAIPHE stands for the six elements that were considered essential for VM quality care: self-efficacy, access, individualisation, wholistic, and education. Each of these elements are described in detail in the thesis. Study 2 concludes Phase B of this thesis.

In Phase C, the data obtained in this body of work was triangulated. The outcomes of Study 1 and Study 2 were juxtaposed to examine their consistency. Patients’ accounts of the challenges of living with VM were compared with VSs’ perspectives and elements of SAIPHE were juxtaposed with Study 1 (vestibular migraineurs’ lived experience and expectations of their practitioners). Finally, VSs’ perspectives on features of VM patients’ education/consultation were integrated with vestibular migraineurs’ articulated educational needs and were developed into a VM-specific consultation framework.

Overall, the outcomes of this thesis indicate that VM is a complex illness to live with and to manage as its effects extend beyond its immediate symptoms. Patients suffer from functional and psychological implications that, if unattended, could have catastrophic sequelae. Despite advances in evidence-based knowledge, and despite the consistency of VSs’ perspectives, vestibular migraineurs’ needs and expectations are not reflected in non-specialised clinical care, particularly general practice, and frequent misdiagnosis and dismissals create a barrier to timely management of patients’ illnesses. This thesis supports the clinical recommendation of promoting a care plan that extends beyond symptom management and incorporates patient education and management of functional and psychological effects of VM.