None listed
Conditions
Brief summary
After a senate inquiry into Australian Lyme-like illness in 2016, the Australian Government released a position statement specifying that “there is a group of Australian patients suffering from the symptoms of a chronic debilitating illness, which many associate with a tick bite” and described this patient group as having Debilitating Symptom Complexes Attributed to Ticks (DSCATT). Following extensive investigations, individuals with DSCATT are usually left without a clear explanation for their illness which can lead to further distress and potentially perpetuate their disease process. Thus, DSCATT is considered a medically unexplained syndrome (MUS), and one, at current, without recognised effective treatments. There has, however, been much research into treatments for other MUS and other chronic illnesses, including specific psychology-based interventions. The aims of this pilot study are to assess the feasibility and acceptability of a tailored, 12-week, psychology-based intervention (informed by Acceptance & Commitment Therapy; ACT) for patients with DSCATT. Specifically, we aim to explore DSCATT patients’: a) willingness to participate in the study (e.g. inquiry, enrolment & retention rates); b) willingness to be consented and enrolled; c) willingness to use the strategies explored in therapy; d) attendance of patients at therapy sessions; e) follow-up and response rates to questionnaires (data collection measures) f) explore their experiences and attitudes towards treatment, post intervention
Interventions
A 12-week open label, single centre, pilot study exploring the feasibility and acceptability of a tailored psychology-based intervention (Acceptance and Commitment Therapy; ACT) in adults (18 years of age and over) who have Debilitating Symptom Complexes Attributed to Ticks (DSCATT). The treatment incorporates principles of ACT which has been shown to improve quality of life and well being in patients with Medically Unexplained Syndromes (MUS) and other chronic illnesses (e.g., cancer, acquired brain injury, chronic pain). It aims to equip patients with practical skills to manage the physical discomfort and psychological distress associated with DSCATT, so that they can take effective action to live according to their values even in the face of persistent illness. The treatment can be flexibly adapted to meet each participant's individual needs (as identified with the study clinician), and also includes modules for improving sleep, addressing difficulties with concentration and memory, as well as navigating social relationships. The treatment intervention will be delivered, one-one-one (i.e. 1 patient with 1 therapist per session) by a clinical/health/neuropsychologist and/or allied health clinician (study clinician) trained in this model of ACT (training and supervision will be facilitated by investigators Prof Chalder, Kanaan & Wilson), and will be adjunctive to the participant’s current treatment/s. The participant will meet with the study clinician for an hour, once/week for 12 weeks and treatment will be guided by a purpose designed therapist manual and corresponding patient workbook (formulated by Prof Wilson & Prof Chalder & the study clinicians). Participants will be encouraged to engage with between-session tasks and practice of skills introduced in sessions, which is estimated to take an additional 1-2 hour per week. Treatment adherence (visits attended) will be recorded by the study clinicians and sessions will be audio recorded to assess fidelity and for training purposes. The intervention will be individualised in the following ways - behaviour and/or cognitions that are the therapeutic focus will be patient led, therefore individualised according to what the participant feels is the most pressing issue/problem for them. This will ensure that the intervention is targeting the most pertinent issue/s the participant is facing and guide the order of delivery for each module within the intervention, i.e. contingent on where the participant is currently at in their recovery. This 'tailoring' will predominately occur between sessions 6-10 when more individualised modules (addressing particular domains of life or specific skills) are introduced. The therapy will be offered face-to-face at the Austin Hospital, Melbourne, VIC (subject to DHHS/hospital restrictions), or via Telehealth to accommodate participants who live interstate or who are unable to travel on site.
Sponsors
Study design
Eligibility
Inclusion criteria
(i) Are greater than or equal to 18 years of age (ii) Identify as having DSCATT (a chronic illness, >6 months, attributed to tick bite/s, which cannot be better explained by another medical condition) (iii) Able to provide written informed consent (iv) Can speak and read English at a level adequate for participation in therapy (v) Have adequate internet connection to facilitate telehealth appointments where necessary
Exclusion criteria
(i) active psychosis (as per The Mini International Neuropsychiatric Interview, MINI, V7 and/or clinician assessment); (ii) drug or alcohol abuse (as per MINI v7); (iii) current benzodiazepine use exceeding the equivalent of 10mg diazepam/day; (iv) are at imminent risk of suicide or self-harm to self or others (as per MINI v7 and/or clinician assessment) (v) A serious and/or unstable medical condition/s that may interfere with participating in the study, to be determined on a case-by-case basis by the medical investigators