Defining the Patient Journey and Identifying Digital Health Solutions in Treatment-Resistant Schizophrenia

Abstract

Background: Schizophrenia is a heterogeneous mental health disorder associated with severe disability. Approximately 30% of patients do not respond to pharmacological treatment, a condition known as treatment-resistant schizophrenia (TRS). Emerging digital solutions could help to improve the treatment of this population. Although the importance of characterising the patient journey (PJ) is widely recognised, and previously published in schizophrenia, this has never been done in patients with TRS to identify their specific needs and select digital approaches to fill the healthcare gaps. Therefore, this study aimed to (1) characterise the PJ in patients with TRS, (2) determine the key needs of these patients, and (3) identify digital solutions that could help to address those needs.

Methods: Three focus groups were constituted: (1) patients with TRS (n = 6); (2) informal caregivers (n = 4); and (3) social/healthcare professionals (n = 16). An advisory board (n = 11) was also created. We used the PJ and patient experience (PEx) methodologies, which place the user experience at the centre of the process. A five-step process was used to define the PJ, to identify patient and caregiver archetypes, to determine the needs and preferences of patients and caregivers, and to identify solutions (technological and others) to address those needs.

Results: We identified the archetypes of patients with TRS and informal caregivers. Nine stages of the PJ were identified: previous symptomatology; emergency care; hospitalization; therapeutic guidelines; outpatient care; diagnosis; disorder control; exacerbations; and risk behaviours. Six key needs were identified: better care during emergencies; improved understanding of the disorder and adverse events; better communication during diagnosis; better control and monitoring of the disorder; better identification of early warning signs; and immediate professional attention. Twenty-six specific initiatives aimed at improving the PEx and care processes were defined.

Conclusions: This study characterised the PJ in patients with TRS. The findings of this study reveal the key areas of the recovery process that need improvement. Importantly, we developed a set of twenty-six specific initiatives to improve clinical outcomes. The main need identified by participants was for non-pharmacological interventions.

Trial Registration: ClinicalTrials.gov NCT05345977.