AYA ‘Can-Sleep’ Program: protocol for a stepped-care, cognitive behavioral therapy based approach to the management of sleep difficulties in adolescents and young adults with cancer

This study is a prospective, single-arm feasibility study of an adapted stepped care sleep intervention for AYA with cancer. The steps are described below. Step 1: Screening Over a planned 15-week period all participating AYA will be screened for insomnia using the Insomnia Severity Index (ISI) (Morin, 1993) and Epworth Sleepiness Scale (ESS) (Johns, 1991). Participants with scores of less than 8 on the ISI and scores of less than 11 ESS will receive no follow up or treatment. Participants who are identified as having sleep difficulties (scores of 8 or greater on the ISI and/or scores of 11 or greater on the ESS) will then be asked to complete questionnaires for obstructive sleep apnoea (STOP BANG) (Chung, Abdullah, Liao, 2016) and restless legs syndrome (RLSS). AYA Can-Sleep stepped care program Step 1. Referral to the Department of Respiratory and Sleep Medicine or Referral to CBT Self-Management Participants who score high on the STOP-BANG (equal to 5 or more) or the RLSS (i.e. yes to all questions) will be referred to the Department of Respiratory and Sleep Medicine at the Royal Melbourne Hospital, Melbourne, Australia for further assessment. Participants who score below cuts offs on both the STOP-BANG and RLSS will be offered the AYA Can-Sleep stepped care program. Participants referred to Step 1 will be provided with the CBT self-management resource (CBT-SM). The Project team partnered with the Victorian and Tasmanian Youth Cancer Action Board (YCAB) to adapt the Can-Sleep resource titled: “Can-Sleep Making night-time sleep problems go away” for the AYA population. The Can-Sleep resource, developed initially for the adult cancer survivor population, by adults, was adapted to ensure it was more engaging, satisfying, and acceptable to young people. YCAB is a 12-member board of young people who have had a diagnosis of cancer between the ages of 15 and 25 years. They are broadly representative of the diversity of young people and have received treatment across the paediatric/adult, metro/regional, public/private healthcare sectors and have a strong track record in the co-design and development of resources for young people in the area. A face to face workshop was conducted with YCAB, where AYA were provided with pre-reading materials including a copy of the current Can-Sleep resource and questions/reflections to prepare for workshop discussions. The workshop commenced with revisiting the rationale behind the development of targeted sleep intervention for AYA cancer survivors. It then explored participant’s experiences with sleep related challenges both during and following treatment completion. This was followed by a brainstorming exercise to gather suggestions regarding content, style and design of the resource. The resource has now been redesigned and rewritten based on feedback from AYA, and has been endorsed by the YCAB. The CBT-SM is a phyiscal handbook resource and includes psychoeducational material and strategies on key cognitive behavioural techniques to manage sleep difficulties. A psychologist or member of the clinical team trained in administering the resource will provide the CBT-SM resource to the AYA, and provide instructions for its use. The participants are directed to the most relevant sections of the resource for them, and asked to try a few strategies to improve their sleep (e.g keep bed a place for sleep, spend less time in bed, develop a good bedtime routine) they are to try these strategies at the participants' own discretion. Approximately three weeks post receiving the CBT-SM resource, AYA will be contacted (via text, email or phone) by a member of the project team to check in and see how their sleep is going, answer any questions the AYA might have and resolve any problems that may have arisen. Five weeks post receiving the CBT-SM, participants will be re-screened using the ISI and ESS. Step 2: Individual CBT Participants referred to individual CBT will be invited to attend 4 structured individual CBT sessions. The individual CBT sessions will be of approximately 50-60 minutes duration, with a psychologist and will be conducted either face to face or via telehealth depending on the participant’s preference. The CBT sessions will occur on a weekly basis, but with some flexibility to attend fortnightly to accommodate work and study commitments. The individual CBT sessions will include all the information provided in the CBT-SM resource and provide an opportunity to identify and address barriers to change. The content of the individual CBT sessions has been modelled on CBT insomnia programs that have been efficacious in the adult cancer population. Adherence: Number of weeks completed of intervention, as well as completion of sleep diaries will be collected on the Project Specific CRF.