Intervention for COMorbid PAin and SLEEP in AYA Living Beyond Cancer (WP1)

The COMPAZzz project aims to co-develop and evaluate the feasibility of a blended pain and sleep management intervention for adolescents and young adults (AYA) living beyond cancer. Pain and sleep disturbances are common among AYA living beyond cancer and frequently coexist, whereby pain may disrupt sleep and poor sleep may increase pain. In turn, these symptoms may negatively affect quality of life, psychological well-being, and participation in education, work, and social activities. Despite the considerable impact of these symptoms, pain and sleep disturbances are often addressed separately in survivorship care. COMPAZzz seeks to address this gap by developing an integrated, non-pharmacological (= without administering medication) intervention combining principles of Pain Science Education (PSE) and Cognitive Behavioural Therapy for insomnia (= sleeplessness) (CBT-i). PSE aims to improve understanding of pain by addressing misconceptions and explaining the biological, psychological, and social factors that influence pain experiences. CBT-i targets thoughts, behaviours, and emotions that contribute to sleep disturbances. Using a Participatory Action Research (PAR) approach, AYA living beyond cancer will actively contribute to the development of the intervention in collaboration with relevant stakeholders, including significant others and oncology clinicians. This collaborative approach aims to ensure that the intervention reflects the needs, preferences, and lived experiences of the target population, thereby supporting its acceptability, engagement, and potential implementation in clinical practice and everyday life. COMPAZzz aims to establish a foundation for more integrated and person-centered survivorship care addressing co-occurring pain and sleep disturbances in AYA living beyond cancer.

Inclusion Criteria: * Able to read, write and speak Dutch. * Able to provide informed consent (aged 18 or older) or informed assent (under 18 years old) (i.e., no severe intellectual disability or psychiatric disorder). * AYA participants: diagnosed with cancer between the ages of 16 and 35 years (AYA ages) and having completed primary cancer treatment with no evidence of active disease for a maximum of five years. The participants experience pain and/or insomnia that developed during or following completion of cancer treatment and can reasonably be attributed to the cancer trajectory. For the purpose of co-creation and intervention development, participants may preferably experience both symptoms, but may also only experience one of the two symptoms (pain or insomnia). Recruitment will seek to achieve an approximately balanced sample (50:50) of participants with pain and participants with insomnia. These conditions are defined as follows: A. Pain: Pain that started during cancer treatment or after completion of cancer treatment, with no minimum cut-off for pain intensity or duration, but with a self-reported significant impact on daily functioning and/or quality of life (QoL). B. Insomnia disorder: Meeting the research diagnostic criteria for insomnia disorder, defined as self-reported sleep difficulties on ≥3 nights per week during the past month, accompanied by ≥1 daytime sleep-related problem). * Adult significant others (aged 18 or older): parent, partner, sibling, close friend, or other relevant person involved in the life of someone living beyond AYA cancer. * Adult oncology clinicians (aged 18 or older): currently involved in the care of people living beyond AYA cancer (e.g., oncologist, nurse, physical therapist, occupational therapist, psychologist). At least one psychologist with a current employment in oncology for AYA will be recruited to join the oncology clinicians and provide expert input on the development of the sleep intervention based on CBT-I principles. * All types of socio-economic status or cultural background. Exclusion Criteria: * Inability to understand Dutch. * Severe cognitive impairment or severe psychiatric condition that prevents meaningful participation in group discussions. * Individuals who do not give consent to audio recording.