Structured triage and referral to reduce callers’ distress levels when using the Cancer Councils’ 13 11 20 telephone services

This stepped-wedge trial will be conducted in two cancer-specific telephone counselling services and will assess the comparative effectiveness of: i) Treatment as Usual (Arm 1): single-stage distress screening and unstructured referral to Cancer Council internal services; compared with ii) Structured Care (Arm 2): multi-stage distress screening and a structured referral model with follow up monitoring. Both Treatment as Usual (Arm 1) and Structured Care (Arm 2) will be delivered by trained consultants during the course of an inbound telephone call to the New South Wales and Victorian Cancer Councils’ 13 11 20 Cancer Information and Support service. According to the stepped wedge design, the Structured Care (Arm 2) intervention will be rolled out sequentially over 3 6-month time periods: 1) all consultants will deliver Usual Care (Arm 1) from 0-6 months, 2) half of the consultants will be randomised to deliver Structured Care (Arm 2) and half will continue to deliver Usual Care (Arm 1) from 7-13 months, and 3) all consultants will deliver Structured Care (Arm 2) from 14-20 months. Accounting for a 1-month wash in period between each time period, the trial will be 20 months. Arm 1 (Treatment as Usual): Depending on the course of the conversation, callers may be offered any of the following existing services by Cancer Council consultants: i) Online peer-based support and information; ii) Face-to-face support groups where people affected by cancer support each other; iii) One-to-one telephone support from a person who has recovered from a similar experience; iv) Telephone support group meetings of 3-7 members and qualified facilitators twice a month; v) referral to social work, legal, financial or transport assistance; vi) cancer survivor programs; vii) information resources; or viii) referral to a counsellor/psychologist. Callers may be offered one or more of these services based on the consultant’s clinical judgement and the caller's level of distress which is measured by a single-item screening tool (the Distress Thermometer [DT]). Arm 2 (Structured Care): Consultants who are randomised to Arm 2 will administer a two-stage screening process (the DT plus PHQ-4). Based on these results, the consultant will refer to the structured care model and offer the caller those services which align with their level of distress (i.e mild, moderate or severe). The structured care model was developed specifically for this study by the University of Newcastle research team, Cancer Council NSW, and Cancer Council Victoria. Development included: i) a review of existing distress screening and management guidelines including the NCCN guidelines; 2) iterative discussion with place card mapping and think aloud methodology; and 3) pilot-testing. The structured care model can be supplemented with an additional follow-up call involving repeat screening and further support for those with elevated or unchanged distress scores (i.e. stepped care). Those callers with moderate to severe distress will be offered this additional outbound call; if accepted, the call will be scheduled at least two weeks following the initial inbound call and dependant on other events (such as start or completion of treatment). Callers allocated to Arm 1 (Treatment as Usual) will not be denied any services. Rather, callers within Arm 1 will not be assessed for service suitability in the systematic and structured fashion which will be the case for Arm 2 (Structured Care). Intervention fidelity: To assess consultants’ fidelity to administering the DT (Arm 1 and 2), the PHQ-4 (Arm 2 only), and the structured care model (Arm 2 only), the research team will review a random sample of audio recordings. Furthermore, using the Client Record Management Systems it will be possible to audit the proportion of calls in which DT or PHQ-4 scores were recorded; participants will also be asked to report which services were offered during their call at a 3- and 6-month follow up survey.