Objective: To describe the emotional journey from symptom onset to current state and identify challenges and unmet needs of participants living with tardive dyskinesia (TD) and caregivers of patients with TD.

Background: TD is a hyperkinetic movement disorder that impacts quality of life and functionality.

Method: Qualitative interviews were conducted with participants living with TD and caregivers (unconnected to each other) in Brazil, Israel, and China. Web-assisted telephone interviews were based on a pre-defined discussion guide, and TD diagnosis was based on self-report. A Blob Tree^© (Pip Wilson and Ian Long, 1980) projective exercise that visually portrayed 21 emotions using “blob people” was used to encourage discussion.

Results: Interviews were conducted with 17 respondents (8 patients, 9 caregivers). Mean age at TD diagnosis ranged from 44–48 years. Respondents tended to choose similar “blob people” (ie, emotions) at different points in the patient journey. Many felt alone during symptom onset, as well as confused and powerless. While all had received antipsychotics, none were aware of TD or the risk before diagnosis. Symptoms were often misattributed and needed multiple consultations before diagnosis. At diagnosis, most reported sadness and frustration. Upon symptom worsening, hopelessness predominated. Patients reported loneliness and isolation in their current state. Most reported an impact of symptoms on daily living, resulting in anger, stress, and social withdrawal. Most gave up work, and symptoms led many to need 24‑hour support. TD had a negative social impact and most noticed mental health decline. Most continued antipsychotics and started TD treatments. Although no specific treatment was mentioned, most reported dissatisfaction with treatments. Some felt that there are a lack of resources and wanted more organizations to provide information and support groups. Most lived with family and felt they had good support from family, friends, and mental health professionals.

Conclusion: In this TD patient journey study, patients and caregivers reported substantial impact on quality of life and feelings of loneliness, confusion, sadness, frustration, and hopelessness. There is a need for greater TD awareness, more accessible information, and more efficient diagnosis routines. Patients and caregivers felt like they had good support.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/patient-and-caregiver-experiences-with-tardive-dyskinesia-emotions-challenges-and-unmet-needs-in-the-patient-journey/