Abstract

In lieu of an abstract, here is a brief excerpt of the content:Subjective Experiences of Tourette SyndromeBeyond the Premonitory UrgeThe authors report no conflicts of interest.There is an evolving recognition in healthcare that the patient's subjective experience needs to be privileged both in understanding clinical phenomena and also ensuring the salience of outcomes used to evaluate the impact of treatment interventions. This is reflected in the expansion of patient-reported outcome measures to capture a person's perception of their own health, and the increasing requirement of involving people with lived experience in the co-design of research studies (National Health and Medical Research Council, 2016) and care improvement initiatives. In mental health it has been long understood that observable behavioral phenomena can only partially inform clinical understanding of the experience of the patient living with the condition. However, capturing the patient's subjective experience faithfully remains a challenge.Tourette syndrome (TS) is a complex condition in which there are clearly observable behavioral phenomena (vocal and motor tics, compulsive and socially inappropriate behaviors), but also a broad and varied range of subjective phenomena reported by different individuals. These may include sensory phenomena such as the premonitory sensory urge preceding a tic, compulsions to touch things a certain number of times or do something repeatedly until it feels "just right," or bothersome intrusive thoughts or images. To further complicate the picture most patients with TS have one or more co-occurring conditions such as attention deficit hyperactivity disorder, obsessive-compulsive disorder, and anxiety, which may actually cause a greater burden of dysfunction and distress than the Tourette symptoms.In their paper, Curtis-Wendlandt et al. (2024) challenge the dependence of current psychiatric diagnostic criteria (e.g., the Diagnostic and Statistical Manual of Mental Disorders, 5th edition) on observable tics, and propose a broader and more dimensional approach to nosology which incorporates sensory, cognitive and affective phenomena. [End Page 47] Data from interviews they conducted identified that premonitory phenomena and urge experiences in tic disorders are more complex and diverse than what is currently reflected in the literature and clinical scales. They also interviewed participants who reported "no urges" or "no premonitory sensations." They commented that the literature generally treats reports of urge absences at face value, and does not address the likelihood that such reports may be ambiguous or problematic. Overall, they concluded that their research suggests that premonitory urges in TS are a complex and diverse phenomenon that requires further study. This reflects with our clinical experience in working with TS patients. Although a large proportion of older patients describe sensory-based premonitory urges, descriptions are not homogenous, with many describing other experiences preceding their tics.When evaluating a patient's response to an intervention (either behavioral or pharmacological) clinicians incorporate a range of information. This includes the severity of their tics (number, type, frequency, intensity, and associated impairment), as well as their mood, participation and performance in study, work, and social activities, and overall quality of life. Standard clinical practice would not typically include assessment of some of the subjective experiences which precede tics. If it was accepted that these subjective phenomena are indeed salient to the patient's well-being, then a challenge would be how to consistently and reliably capture these feelings to operationalize a comprehensive patient-centered assessment.The primary evidence-based treatment for tic disorders, comprehensive behavioral intervention for tics (CBIT), involves training to increase the awareness of premonitory urges (Woods et al., 2008). Furthermore, successful 'blocking' of tics during the course of CBIT requires the patient to be aware of premonitory urges. Clinicians having a better understanding of the complexity and diversity of experiences which precede tics, as well as using open-ended questioning styles, may assist with improving CBIT outcomes. [End Page 48]Related ArticlesFeature Article: Dimensions, Not Types: On the Phenomenology of Premonitory Urges in Tourette SyndromeCommentary: Priming and Narrative Habits in the Phenomenological Interview: Reflections on a Study of Tourette SyndromeCommentary: Subjective Experiences of Tourette Syndrome: Beyond the Premonitory UrgeResponse: Phenomenological Interviews and Tourette’sDaryl EfronThe Royal Children's Hospital MelbourneIvan MathiesonThe Laneway ClinicDaryl Efron Daryl Efron is a Consultant Pediatrician, Royal Children's Hospital Senior Research Fellow, Murdoch...