Each year in Australia, over 1200 adolescents and young adults (AYA) aged between 15 and 25 years are diagnosed with cancer (1). At this life stage, a cancer diagnosis comes at a critical time of growth and development with far-reaching consequences for both physical and psychosocial health (2), extending into the post-treatment survivorship phase (3, 4). Sleep problems are among the most commonly reported consequences of cancer treatment, with up to 50% of AYA experiencing sleep disturbance and insomnia before, during and after treatment (5–7).
The most commonly reported sleep problems for AYA include problems initiating sleep, remaining asleep, excessive daytime sleepiness, fragmented sleep and excessive napping (7). Sleep problems in AYA have been associated with emotional regulation difficulties, deficits in social skills and cognition, school and work challenges, as well as higher rates of depression, anxiety and posttraumatic stress disorder (PTSD)(8). Developmentally, AYA are at increased risk biologically and behaviourally for sleep difficulties (9, 10). Changes in circadian and hormonal processes together with external factors such as social commitments, evening technology use, high homework load or evening work lead to later bedtimes and shorter sleep duration (11, 12). When an AYA is diagnosed with cancer, it is common for them to experience further disruptions to sleep due factors such as frequent hospitalisations, the physical symptoms of cancer, medication and treatment side effects (6). Following treatment, AYA are faced with many additional stressors, including ongoing physical symptoms, stress about returning to school and/or work, anxiety about a recurrence of their cancer, as well as ongoing medical demands (6).
Cognitive Behaviour Therapy (CBT) is a psychological intervention that aims to change thoughts, behaviours and emotions that can interfere or exacerbate sleep problems (13). CBT for insomnia is delivered as a multi-component intervention and may include sleep restriction, stimulus control, sleep hygiene, cognitive restructuring and relaxation training (14). Whilst research has demonstrated its effectiveness in many patient populations, including adults with cancer (15), few studies have focused on its effectiveness on the AYA population. In a study with 12 AYA with cancer, Zhou et al. (2017) piloted a CBT for insomnia program, which consisted of three individual sessions (approxiamately 14 days apart) with a clinical psychologist. Sleep variables were found to improve immediately post-intervention (at Session 3) and were sustained at two-month follow up (16). In a more recent study by Zhou et al. (2020), a CBT program called Sleep Healthy using the Internet (SHUTi) was delivered to AYA with cancer (17). Consisting of six sessions, SHUTi is based on the fundamental strategies from CBT for insomnia and is delivered via an automated internet program. At the completion of SHUTi, AYA experienced improvements in several domains including daytime sleepiness, fatigue, and quality of life. These improvements were maintained up to two months post intervention. The SHUT-I program however now requires a subscription (approximately $200 per person) which may not feasible for AYA or cancer services.
Traditional CBT is delivered through 50-60 minute face-to-face sessions, with one psychologist/counsellor to one person (15). This model is expensive, and often does not fit the needs of AYA who are also juggling work, school and other social commitments. Another significant barrier in the treatment of sleep difficulties is the shortage of experts trained in CBT both in the community and in cancer centres across the world (18). An option to improve accessibility and feasibility is self-management CBT resources. A meta-analysis of randomised controlled trials found that self-management CBT resources are an efficacious and acceptable alternative for the treatment of insomnia, especially when telephone consultation was included to encourage participation and enhance adherence (19). Self-management CBT resources have been found to be effective in both adults with cancer (20) and AYA with cancer (17).
While self-management CBT resources are an efficacious alternative, a meta-analysis indicated that sleep improvements were consistently of a lower magnitude than those from face to face CBT and were not a substitute for professionally administered treatment (21). A meta-analysis of randomised controlled trials recommended the use of self-management CBT as an entry level of a stepped care model for insomnia (19). Stepped-care models allow for more rapid access to mental health services in a wide range of settings (22). They are based on the premise that interventions should vary in type and intensity, especially in health care systems with limited resources (23). In a stepped care model an entry level treatment should be the most readily accessible, cost effective, least restrictive and able to provide signficant health gain, such as self-management CBT (24). Treatment intensity can then be stepped up if the entry level treatment is not providing significant health gain (24, 25). With a stepped care model to manage insomnia, the more intensive treatments (face-to-face sessions) are reserved for people who do not benefit from less intensive self-management CBT, as a result treatment costs are reduced and resource allocation is maximised (26).
Stepped care interventions developed for adults with cancer have been shown to improve the accessibility to CBT for treatment of sleep difficulties (27). There have been no published trials of stepped care for sleep diffcilculties in the AYA population. This study aims to evaluate the first known stepped care program to treat sleep difficulties in AYA with cancer.