Commencement of and Retention in Web-Based Interventions and Response to Prompts and Reminders: Longitudinal Observational Study Based on Two Randomized Controlled Trials.

BACKGROUND: Web-based interventions are effective for several psychological problems. However, recruitment, adherence, and missing data are challenges when evaluating these interventions. OBJECTIVE: This study aimed to describe the use patterns during the commencement phase, possible retention patterns (continuation of data provision), and responses to prompts and reminders among participants in 2 randomized controlled trials (RCTs) evaluating web-based interventions. METHODS: Data on use patterns logged in 2 RCTs aiming to reduce symptoms of anxiety and depression among adult patients recently diagnosed with cancer (AdultCan RCT) and patients with a recent myocardial infarction (Heart RCT) were analyzed. The web-based intervention in the AdultCan trial consisted of unguided self-help and psychoeducation and that in the Heart trial consisted of therapist-supported cognitive behavioral therapy. In total, 2360 participants' use patterns at first log-in, including data collection at baseline (ie, commencement) and at 2 follow-ups, were analyzed. Both the intervention and comparison groups were analyzed. RESULTS: At commencement, 70.85% (909/1283) and 86.82% (935/1077) of the participants in AdultCan and Heart RCTs, respectively, logged in and completed baseline data collection after receiving a welcome email with log-in credentials. The median duration of the first log-in was 44 minutes and 38 minutes in AdultCan and Heart RCTs, respectively. Slightly less than half of the participants' first log-ins were completed outside standard office hours. More than 80% (92/114 and 103/111) of the participants in both trials explored the intervention within 2 weeks of being randomized to the treatment group, with a median duration of 7 minutes and 47 minutes in AdultCan and Heart RCTs, respectively. There was a significant association between intervention exploration time during the first 2 weeks and retention in the Heart trial but not in the AdultCan trial. However, the control group was most likely to retain and provide complete follow-up data. Across the 3 time points of data collection explored in this study, the proportion of participants responding to all questionnaires within 1 week from the prompt, without a reminder, varied between 35.45% (413/1165) and 66.3% (112/169). After 2 reminders, up to 97.6% (165/169) of the participants responded. CONCLUSIONS: Most participants in both RCTs completed the baseline questionnaires within 1 week of receiving the welcome email. Approximately half of them answered questions at baseline data collection outside office hours, suggesting that the time flexibility inherent in web-based interventions contributes to commencement and use. In contrast to what was expected, the intervention groups generally had lower completion rates than the comparison groups. About half of the participants completed the questionnaires without a reminder, but thereafter, reminders contributed to both baseline and follow-up retention, suggesting they were effective. Strategies to increase commencement of and retention in eHealth interventions are important for the future development of effective interventions and relevant research.

User Experiences of an Internet-Based Stepped-Care Intervention for Individuals With Cancer and Concurrent Symptoms of Anxiety or Depression (the U-CARE AdultCan Trial): Qualitative Study.

BACKGROUND: The internet-based stepped-care intervention iCAN-DO, used in the multicenter randomized controlled trial AdultCan, was developed for adult patients undergoing treatment for cancer and concurrently experiencing anxiety or depressive symptoms. iCAN-DO aimed to decrease symptoms of anxiety or depression. Step 1 comprises access to a library with psychoeducational material and a peer-support section, as well as the possibility to pose questions to a nurse. Step 2 of the intervention offers treatment consisting of internet-based cognitive behavioral therapy (iCBT) to participants still experiencing anxiety or depression at 1, 4, or 7 months after inclusion. OBJECTIVE: The study aimed to explore user experiences of delivery, design, and structure of iCAN-DO from the perspective of people with cancer. METHODS: We studied user experiences by interviewing 15 informants individually: 10 women with breast cancer (67%), 4 men with prostate cancer (27%), and 1 man with colorectal cancer (7%) with a mean age 58.9 years (SD 8.9). The interviews focused on informants' perceptions of ease of use and of system design and structure. Informants had been included in iCAN-DO for at least 7 months. They were purposefully selected based on activity in Step 1, participation in iCBT (ie, Step 2), gender, and diagnosis. RESULTS: Of the 15 informants, 6 had been offered iCBT (40%). All informants used the internet on a daily basis, but 2 (13%) described themselves as very inexperienced computer users. The analysis revealed three subthemes, concerning how user experiences were affected by disease-specific factors and side effects (User experience in the context of cancer), technical problems (Technical struggles require patience and troubleshooting), and the structure and design of iCAN-DO (Appealing and usable, but rather simple). CONCLUSIONS: The results indicate that user experiences were affected by informants' life situations, the technical aspects and the design of iCAN-DO, and informants' preferences. The results have generated some developments feasible to launch during the ongoing study, but if iCAN-DO is to be used beyond research interest, a greater level of tailoring of information, features, and design may be needed to improve user experiences. The use of recurrent questionnaires during the treatment period may highlight an individual's health, but also function as a motivator showing improvements over time.

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

BACKGROUND: U-CARE is a multidisciplinary eHealth research program that involves the disciplines of caring science, clinical psychology, health economics, information systems, and medical science. It was set up from scratch in a university setting in 2010, funded by a governmental initiative. While establishing the research program, many challenges were faced. Systematic documentation of experiences from establishing new research environments is scarce. OBJECTIVE: The aim of this paper was to describe the challenges of establishing a publicly funded multidisciplinary eHealth research environment. METHODS: Researchers involved in developing the research program U-CARE identified challenges in the formal documentation and by reflecting on their experience of developing the program. The authors discussed the content and organization of challenges into themes until consensus was reached. RESULTS: The authors identified 15 major challenges, some general to establishing a new research environment and some specific for multidisciplinary eHealth programs. The challenges were organized into 6 themes: Organization, Communication, Implementation, Legislation, Software development, and Multidisciplinarity. CONCLUSIONS: Several challenges were faced during the development of the program and several accomplishments were made. By sharing our experience, we hope to help other research groups embarking on a similar journey to be prepared for some of the challenges they are likely to face on their way.

The Origin and Impact of Ideals in eHealth Research: Experiences From the U-CARE Research Environment.

BACKGROUND: The prevalence of information technology (IT) in society is a foundation for new modes of interaction between patients and health specialists. IT plays an important role in the renewal of care. Several countries have incorporated eHealth plans into their national health strategies. Part of the eHealth evolution concerns Internet psychological treatment and psychosocial care. These interventions are complex to design and evaluate due to legal, ethical, organizational, technical, and methodological challenges. OBJECTIVE: The objective of our study was to seek to make explicit contributions to the understanding of ideals in eHealth research, and illuminate their implications for establishing an effective research environment. Our analysis draws from three years of experience in establishing an eHealth research environment, and the literature. METHODS: We worked inductively to characterize challenging research ideals, and their origins, in our environment. Thereafter, we made a selective search of the literature to scrutinize and illuminate each ideal and it's implications. RESULTS: In this work, we propose a structured approach to address ideals in eHealth research. The scrutinized ideals are accountability, innovation, rigor, relevance, and sustainability. The approach supports researchers to systematically understand the ideals, their origin, and to manage their implications within an eHealth research environment. CONCLUSIONS: The complexity of eHealth research causes a need for sustainable, multi-disciplinary research environments. There is a need for a structured approach to organize eHealth research. The proposed approach helps to systematically scrutinize ideals, thus promoting high quality research.