The Prospective Dutch Colorectal Cancer (PLCRC) cohort: real-world data facilitating research and clinical care

Real-world data (RWD) sources are important to advance clinical oncology research and evaluate treatments in daily practice. Since 2013, the Prospective Dutch Colorectal Cancer (PLCRC) cohort, linked to the Netherlands Cancer Registry, serves as an infrastructure for scientific research collecting additional patient-reported outcomes (PRO) and biospecimens. Here we report on cohort developments and investigate to what extent PLCRC reflects the “real-world”. Clinical and demographic characteristics of PLCRC participants were compared with the general Dutch CRC population (n = 74,692, Dutch-ref). To study representativeness, standardized differences between PLCRC and Dutch-ref were calculated, and logistic regression models were evaluated on their ability to distinguish cohort participants from the Dutch-ref (AU-ROC 0.5 = preferred, implying participation independent of patient characteristics). Stratified analyses by stage and time-period (2013–2016 and 2017–Aug 2019) were performed to study the evolution towards RWD. In August 2019, 5744 patients were enrolled. Enrollment increased steeply, from 129 participants (1 hospital) in 2013 to 2136 (50 of 75 Dutch hospitals) in 2018. Low AU-ROC (0.65, 95% CI: 0.64–0.65) indicates limited ability to distinguish cohort participants from the Dutch-ref. Characteristics that remained imbalanced in the period 2017–Aug’19 compared with the Dutch-ref were age (65.0 years in PLCRC, 69.3 in the Dutch-ref) and tumor stage (40% stage-III in PLCRC, 30% in the Dutch-ref). PLCRC approaches to represent the Dutch CRC population and will ultimately meet the current demand for high-quality RWD. Efforts are ongoing to improve multidisciplinary recruitment which will further enhance PLCRC’s representativeness and its contribution to a learning healthcare system

Barriers experienced by nurses providing smoking cessation support to disadvantaged, young women during and after pregnancy

In Europe, smoking during and after pregnancy is still highly prevalent among socioeconomically disadvantaged women. Nurses caring for these women can play a key role in smoking cessation, but encounter many problems when providing support. This research aims to identify barriers in providing smoking cessation support, experienced by nurses working within a Dutch preventive care programme for disadvantaged young women (VoorZorg), and to understand the underlying reasons of these barriers. Sixteen semi-structured interviews with nurses were performed. All interviews were recorded, transcribed and analysed deductively and inductively. We found that the VoorZorg programme provided nurses with training, resources and time to deliver smoking cessation support. Yet, nurses experienced important barriers, such as unmotivated clients and support methods that do not fit clients’ needs. Underlying reasons are competing care demands, unsatisfactory training for cessation support, lack of self-efficacy in attending their clients, and conflicts with own professional attitudes. The results emphasise that nurses’ ability to provide smoking cessation support could be improved by proper training in interventions that fit their clients’ needs, and by time schedules and task definitions that help them to prioritise smoking cessation support over other matters

Preferences of young adults on the development of a new digital add-on alcohol intervention for depression treatment: A qualitative study

Aim: To explore the preferences of young adults with regard to the development of a new digital add-on alcohol intervention to complement depression treatment. Methods: This qualitative study included young adults (18–35 years) with experience of either problematic alcohol use or depression or both (n = 29). Two rounds of focus groups were conducted, with two focus groups in each round. All focus groups were recorded, transcribed and analysed deductively and inductively on the basis of qualitative content analysis of the intervention type, features and design. Results: Young adults preferred a mobile health application with a clear and simple objective and navigation which was also accessible on a computer. With regard to intervention features, participants indicated a preference for in-depth, gain-framed information on alcohol use and a main feature enabling them to record their alcohol use and mood, which would be rewarded. Other preferences included personal goal-setting and monitoring, an activity list, experience stories, peer contact, guidance from experts by experience or volunteers and receiving notifications from the application. In terms of design, participants preferred short, animated videos and animation figure illustrations to complement written text. Moreover, participants rated the design of the intervention as highly important, yet very personal. Generally, participants preferred a light pastel colour scheme. Once again, participants indicated a need for a clear dashboard using pictograms to reduce the amount of text and fast, easy-to-use navigation. Conclusion: The preferences indicated by young adults with regard to the intervention type, features and design may enhance the development of a new digital add-on alcohol intervention to complement depression treatment

Mobile health for smoking cessation among disadvantaged young women during and after pregnancy: User-centered design and usability study

Objective: This study aims to describe the user-centered design and usability evaluation of Kindle, an mHealth app with game and social support elements, to support disadvantaged young women during and after pregnancy through the first stages of smoking cessation. Methods: Disadvantaged women (n=9), members of their social networks (n=4), and nurses supporting these women (n=51) were informants throughout the iterative prototype development of Kindle according to the International Organization for Standardization 9241-11:2018. Specific phases included understanding the context of use through secondary analysis of qualitative interview data (phase 1), establishing the user and organizational requirements (phase 2), production of design solutions (phase 3), and usability inspection of the prototype through a heuristic evaluation (3 experts) along with user testing by a think aloud method (5 disadvantaged women and 5 nurses; phase 4). Usability problems were categorized according to the principles of the Healthcare Information and Management Systems Society. Results: Phase 1 resulted in an understanding of the VoorZorg program and the needs of VoorZorg nurses and clients (eg, focus on early stages of change and building new supportive networks to aid clients in smoking cessation). In phase 2, we established requirements (n=22; eg, mHealth app, secure communication between nurses and clients, easy-to-use interfaces, inclusion of game elements, and tailoring at early stages of change in smoking cessation). Phase 3 resulted in a prototype of Kindle, combining the interface for nurses and clients, including the following functionalities: personal goal setting with earning points; secured chat function between nurses and other clients; and tips, diary, and profile creation. The heuristic evaluation and thinking aloud method in phase 4 revealed 78 usability problems in the interfaces. Most usability problems concerned simplicity (eg, unclear clickable button) and naturalness (eg, unclear icon). Conclusions: The user-centered design and usability testing of the mHealth app Kindle yielded useful insights. The involvement of end users, specifically socioeconomically disadvantaged women during and after their pregnancy, resulted in a prototype that met their needs and requirements (eg, mHealth app, secure communication between nurses and clients, easy-to-use interfaces, inclusion of game elements, and tailoring to the early stages of change in smoking cessation) to achieve readiness for smoking cessation. Moreover, the usability evaluation by end users and experts revealed unique usability problems for this population. These insights allow for further optimization of Kindle and encourage future studies to engage disadvantaged populations in all phases of mHealth intervention design and usability testing

Smoking cessation among disadvantaged young women during and after pregnancy: Exploring the role of social networks

Objective: Smoking prevalence during and after pregnancy remains high among socioeconomically disadvantaged, European women. This research aims to gain insight into the role of social networks on smoking cessation among disadvantaged young women during and after pregnancy. Design: Qualitative interview study. Setting: Dutch preventive care program (VoorZorg). Participants: Disadvantaged young women during and after pregnancy (n = 17) who participated in a Dutch preventive care program, and members in their social networks (n = 4). Methods: All qualitative interviews were recorded, transcribed, and analyzed by iterative coding processes. Findings: Many women were not intrinsically motivated to quit smoking due to, amongst other factors, difficulties in their lives (e.g. domestic violence, psychosocial problems), limited supportive social networks, and a strong dependence on relatives who smoked. Women seemed to be prompted to smoke by smoking cues in their social networks, while distancing from smokers would lead to feelings of social exclusion. When attempting to stop smoking, women experienced little encouragement from their social networks, which instead often undermined their smoking cessation efforts. Key conclusions and implications for practice: The social networks of disadvantaged young women mostly had a negative role on their smoking cessation efforts. Our results emphasize the need to look at interventions that involve women's social networks, and explore novel opportunities, such as eHealth and mHealth applications so that these women cancan build supportive new social networks

Smoking cessation among disadvantaged young women during and after pregnancy: Exploring the role of social networks

Objective: Smoking prevalence during and after pregnancy remains high among socioeconomically disadvantaged, European women. This research aims to gain insight into the role of social networks on smoking cessation among disadvantaged young women during and after pregnancy. Design: Qualitative interview study. Setting: Dutch preventive care program (VoorZorg). Participants: Disadvantaged young women during and after pregnancy (n = 17) who participated in a Dutch preventive care program, and members in their social networks (n = 4). Methods: All qualitative interviews were recorded, transcribed, and analyzed by iterative coding processes. Findings: Many women were not intrinsically motivated to quit smoking due to, amongst other factors, difficulties in their lives (e.g. domestic violence, psychosocial problems), limited supportive social networks, and a strong dependence on relatives who smoked. Women seemed to be prompted to smoke by smoking cues in their social networks, while distancing from smokers would lead to feelings of social exclusion. When attempting to stop smoking, women experienced little encouragement from their social networks, which instead often undermined their smoking cessation efforts. Key conclusions and implications for practice: The social networks of disadvantaged young women mostly had a negative role on their smoking cessation efforts. Our results emphasize the need to look at interventions that involve women's social networks, and explore novel opportunities, such as eHealth and mHealth applications so that these women cancan build supportive new social networks

Women's Participation in Decision-Making in Maternity Care: A Qualitative Exploration of Clients' Health Literacy Skills and Needs for Support

Shared decision-making requires adequate functional health literacy (HL) skills from clients to understand information, as well as interactive and critical HL skills to obtain, appraise and apply information about available options. This study aimed to explore women's HL skills and needs for support regarding shared decision-making in maternity care. In-depth interviews were held among women in Dutch maternity care who scored low (n = 10) and high (n = 13) on basic health literacy screening test(s). HL skills and perceived needs for support were identified through thematic analysis. Women appeared to be highly engaged in the decision-making process. They mentioned searching and selecting general information about pregnancy and labor, constructing their preferences based on their own pre-existing knowledge and experiences and by discussions with partners and significant others. However, women with low basic skills and primigravida perceived difficulties in finding reliable information, understanding probabilistic information, constructing preferences based on benefit/harm information and preparing for consultations. Women also emphasized dealing with uncertainties, changing circumstances of pregnancy and labor, and emotions. Maternity care professionals could further support clients by guiding them towards reliable information. To facilitate participation in decision-making, preparing women for consultations (e.g., agenda setting) and supporting them in a timely manner to understand benefit/harm information seem important

The Prospective Dutch Colorectal Cancer (PLCRC) cohort: real-world data facilitating research and clinical care

Real-world data (RWD) sources are important to advance clinical oncology research and evaluate treatments in daily practice. Since 2013, the Prospective Dutch Colorectal Cancer (PLCRC) cohort, linked to the Netherlands Cancer Registry, serves as an infrastructure for scientific research collecting additional patient-reported outcomes (PRO) and biospecimens. Here we report on cohort developments and investigate to what extent PLCRC reflects the “real-world”. Clinical and demographic characteristics of PLCRC participants were compared with the general Dutch CRC population (n = 74,692, Dutch-ref). To study representativeness, standardized differences between PLCRC and Dutch-ref were calculated, and logistic regression models were evaluated on their ability to distinguish cohort participants from the Dutch-ref (AU-ROC 0.5 = preferred, implying participation independent of patient characteristics). Stratified analyses by stage and time-period (2013–2016 and 2017–Aug 2019) were performed to study the evolution towards RWD. In August 2019, 5744 patients were enrolled. Enrollment increased steeply, from 129 participants (1 hospital) in 2013 to 2136 (50 of 75 Dutch hospitals) in 2018. Low AU-ROC (0.65, 95% CI: 0.64–0.65) indicates limited ability to distinguish cohort participants from the Dutch-ref. Characteristics that remained imbalanced in the period 2017–Aug’19 compared with the Dutch-ref were age (65.0 years in PLCRC, 69.3 in the Dutch-ref) and tumor stage (40% stage-III in PLCRC, 30% in the Dutch-ref). PLCRC approaches to represent the Dutch CRC population and will ultimately meet the current demand for high-quality RWD. Efforts are ongoing to improve multidisciplinary recruitment which will further enhance PLCRC’s representativeness and its contribution to a learning healthcare system