Guided internet-administered self-help to reduce symptoms of anxiety and depression among adolescents and young adults diagnosed with cancer during adolescence (U-CARE: YoungCan): a study protocol for a feasibility trial

Abstract

IntroductionA subgroup of adolescents and young adults diagnosed with cancer during adolescence reports elevated levels of anxiety and depressive symptoms and unmet needs for psychological support. Evidence-based psychological treatments tailored for this population are lacking. This protocol describes a feasibility study of a guided-internet-administered self-help programme (YoungCan) primarily targeting symptoms of anxiety and depression among young persons diagnosed with cancer during adolescence and of the planned study procedures for a future controlled trial.Methods/analysisThe study is an uncontrolled feasibility trial with a pre-post and 3-month follow-up design. Potential participants aged 15–25 years, diagnosed with cancer during adolescence, will be identified via the Swedish Childhood Cancer Registry. 30 participants will be included. Participants will receive YoungCan, a 12-week therapist-guided, internet-administered self-help programme consisting primarily of cognitive–behavioural therapy organised into individually assigned modules targeting depressive symptoms, worry and anxiety, body dissatisfaction and post-traumatic stress. Interactive peer support and psychoeducative functions are also available. Feasibility outcomes include: recruitment and eligibility criteria; data collection; attrition; resources needed to complete the study and programme; safety procedures; participants' and therapists' adherence to the programme; and participants' acceptability of the programme and study methodology. Additionally, mechanisms of impact will be explored and data regarding symptoms of anxiety, depression, post-traumatic stress, body dissatisfaction, reactions to social interactions, quality of life, axis I diagnoses according to the Mini International Neuropsychiatric Interview and healthcare service use will be collected. Exploratory analyses of changes in targeted outcomes will be conducted.Ethics/disseminationThis feasibility protocol was approved by the Regional Ethical Review Board in Uppsala, Sweden (ref: 2016/210). Findings will be disseminated to relevant research, clinical, health service and patient communities through publications in peer-reviewed and popular science journals and presentations at scientific and clinical conferences.Trial registration numberISRCTN97835363.

Fifteen Challenges in Establishing a Multidisciplinary Research Program on eHealth Research in a University Setting: A Case Study

“…Web-based psychosocial and psychological self-help programs have been developed for pediatric oncology, adult oncology, and cardiology [8,9,11,14]. Within the U-CARE program an infrastructure, that is, logistics, structures, and policies, for delivering care and psychological treatment online has been created.…”

“…Regarding establishing a research platform, the most significant output since the inception of the U-CARE program has been building an Internet portal, that is, the U-CARE portal, a generic and flexible Internet portal that supports collection of data and provision of psychosocial care and psychological treatment. Web-based psychosocial and psychological self-help programs have been developed for pediatric oncology, adult oncology, and cardiology [ 8 , 9 , 11 , 14 ]. Within the U-CARE program an infrastructure, that is, logistics, structures, and policies, for delivering care and psychological treatment online has been created.…”

Health-Related Internet Use Among Otolaryngology Patients

“…5,6 Additional research has focused on differences in health information technology (HIT) use among specific patient groups (patients with breast cancer, asthma, and in palliative care, among others) to optimize care. 7,8 Their results reflected the HINTS data, with older and more rural patients less likely to utilize HIT for their care.…”

The Design of a System for Online Psychosocial Care: Balancing Privacy and Accountability in Sensitive Online Healthcare Environments

“…The use of the U-CARE software, which was at the initial idea stage in late 2010, is starting to become visible in research publications. Early papers concern the design of internet-based trials (e.g., Mattsson et al, 2013;Norlund et al, 2015;Ander et al, 2017;Hauffman et al, 2017). More recent papers report on trial results (e.g., Larsson et al, 2017;Ternström et al, 2017;Norlund et al, 2018;Wallin et al, 2018;Hauffman et al, 2020a;Hauffman et al 2020b) and studies of user behavior in eHealth contexts (e.g., Wallert et al, 2018;Igelström et al, 2020).…”