Background: Medication nonadherence negatively impacts the health outcomes of people with cancer as well as health care costs. Digital technologies present opportunities to address this health issue. However, there is limited evidence on how to develop digital interventions that meet the needs of people with cancer, are perceived as useful, and are potentially effective in improving medication adherence.
Objective: The objective of this study was to co-design, develop, and preliminarily evaluate an innovative mobile health solution called Safety and Adherence to Medication and Self-Care Advice in Oncology (SAMSON) to improve medication adherence among people with cancer.
Methods: Using the 4 cycles and 6 processes of design science research methodology, we co-designed and developed a medication adherence solution for people with cancer. First, we conducted a literature review on medication adherence in cancer and a systematic review of current interventions to address this issue. Behavioral science research was used to conceptualize the design features of SAMSON. Second, we conducted 2 design phases: prototype design and final feature design. Last, we conducted a mixed methods study on patients with hematological cancer over 6 weeks to evaluate the mobile solution.
Results: The developed mobile solution, consisting of a mobile app, a web portal, and a cloud-based database, includes 5 modules: medication reminder and acknowledgment, symptom assessment and management, reinforcement, patient profile, and reporting. The quantitative study (n=30) showed that SAMSON was easy to use (21/27, 78%). The app was engaging (18/27, 67%), informative, increased user interactions, and well organized (19/27, 70%). Most of the participants (21/27, 78%) commented that SAMSON's activities could help to improve their adherence to cancer treatments, and more than half of them (17/27, 63%) would recommend the app to their peers. The qualitative study (n=25) revealed that SAMSON was perceived as helpful in terms of reminding, supporting, and informing patients. Possible barriers to using SAMSON include the app glitches and users' technical inexperience. Further needs to refine the solution were also identified. Technical improvements and design enhancements will be incorporated into the subsequent iteration.
Conclusions: This study demonstrates the successful application of behavioral science research and design science research methodology to design and develop a mobile solution for patients with cancer to be more adherent. The study also highlights the importance of applying rigorous methodologies in developing effective and patient-centered digital intervention solutions.
Background: Adolescents and young adults (AYAs) diagnosed with cancer experience physical, cognitive, and psychosocial effects from cancer treatment that can negatively affect their ability to remain engaged in education or work through cancer treatment and in the long term. Disengagement from education or work can have lasting implications for AYAs' financial independence, psychosocial well-being, and quality of life. Australian AYAs with cancer lack access to adequate specialist support for their education and work needs and report a preference for web-based support that they can access from anywhere, in their own time. However, it remains unclear what web-based resources exist that are tailored to support AYAs with cancer in reaching their educational or work goals.
Objective: This study aimed to determine what web-based resources exist for Australian AYAs with cancer to (1) support return to education or work and (2) identify the degree to which existing resources are age-specific, cancer-specific, culturally inclusive, and evidence-based; are co-designed with AYAs; use age-appropriate language; and are easy to find.
Methods: We conducted an environmental scan by searching Google with English search terms in August 2022 to identify information resources about employment and education for AYAs ever diagnosed with cancer. Data extraction was conducted in Microsoft Excel, and the following were assessed: understandability and actionability (using the Patient Education and Materials Tool), readability (using the Sydney Health Literacy Laboratory Health Literacy Editor), and whether the resource was easy to locate, evidence-based, co-designed with AYAs, and culturally inclusive of Aboriginal and Torres Strait Islander peoples. The latter was assessed using 7 criteria previously developed by members of the research team.
Results: We identified 24 web-based resources, comprising 22 written text resources and 12 video resources. Most resources (21/24, 88%) were published by nongovernmental organizations in Australia, Canada, the United States, and the United Kingdom. A total of 7 resources focused on education, 8 focused on work, and 9 focused on both education and work. The evaluation of resources demonstrated poor understandability and actionability. Resources were rarely evidence-based or co-designed by AYAs, difficult to locate on the internet, and largely not inclusive of Aboriginal and Torres Strait Islander populations.
Conclusions: Although web-based resources for AYAs with cancer are often available through the websites of hospitals or nongovernmental organizations, this environmental scan suggests they would benefit from more evidence-based and actionable resources that are available in multiple formats (eg, text and audio-visual) and tailored to be age-appropriate and culturally inclusive.
Cancer prevalence data for Black Americans is monolithic and fails to consider the diverse cultures and backgrounds within that community. For instance, African immigrants constitute a meaningful proportion of the foreign-born Black immigrants in the United States (42%), but the prevalence of cancer in the African immigrant community itself is unknown. Therefore, without accurate cancer prevalence data, it is impossible to identify trends and other key factors that are needed to support the health of African immigrants and their children. Moreover, it is impossible to understand how the culture and language of subgroups influence their cancer-related health behavior. While research in this area is limited, the existing literature articulates the need for culturally responsive and culturally tailored cancer education for African immigrants and their adolescent children, which is what we advocate for in this viewpoint paper. Existing projects demonstrate the feasibility of culturally responsive programming for adults; however, few projects include or focus on adolescents or children born to African immigrants. To best meet the needs of this understudied community, researchers must use culturally competent interventions alongside familiar, usable media. For adolescents, technology is ubiquitous thus, the creation of a culturally tailored digital intervention has immense potential to improve cancer awareness and prevention for youth and their community. More research is needed to address many of the existing research gaps and develop a rich understanding of the unique experience of cancer among African immigrant families that can be used to inform intervention development. Through this viewpoint, we review the current state of cancer-related research among African immigrant families in the United States. In this paper, we acknowledge the current knowledge gaps and issues surrounding measurement and then discuss the factors relevant to designing an educational intervention targeted at African immigrants and the role of African immigrant youth.
Background: Social support is essential to promoting optimal health outcomes for women with breast cancer. However, an estimated 12% of women with breast cancer simultaneously experience intimate partner violence (IPV; physical, psychological, or sexual abuse by an intimate partner). Women who experience IPV during breast cancer may lack traditional social support, and thus seek out alternative sources of support. Online community forums, such as Reddit, can provide accessible social connections within breast cancer-specific communities. However, it is largely unknown how women with breast cancer use Reddit to describe and seek support for experiences of IPV.
Objective: This study aims to explore how patients with breast cancer describe toxic relationships with their partners and immediate family members on Reddit.
Methods: This exploratory, cross-sectional, topic-modeling study analyzed textual data from 96 users in the r/breastcancer subreddit in February 2023. The meaning extraction method, inclusive of principal component analysis, was used to identify underlying components. Components were subjected to sentiment analysis and summative content analysis with emergent categorical development to articulate themes.
Results: Seven themes emerged related to toxic relationships: (1) contextualizing storytelling with lymph nodes, (2) toxic behavior and venting emotions, (3) abandonment and abuse following diagnosis, (4) toxic relationships and social-related fears, (5) inner strength and navigating breast cancer over time, (6) assessing social relationships and interactions, and (7) community advice and support. Toxic relationships were commonly characterized by isolation, abandonment, and emotional abuse, which had profound emotional consequences for patients. Reddit facilitated anonymous venting about toxic relationships that helped patients cope with intense feelings and stress. Exchanging advice and support about navigating toxic relationships during breast cancer were core functions of the r/breastcancer community.
Conclusions: Findings emphasized the value of Reddit as a source of social support for patients with breast cancer experiencing toxic relationships. Clinicians who understand that many patients with breast cancer experience toxic relationships and considerable psychological sequelae are better prepared to support their patients' holistic well-being. Further investigation of Reddit as a possible resource for advice, information, and support has the potential to help inform clinical practice and subsequently, patient health outcomes.
In this 2-institution feasibility pilot, oncology fellows used and updated freely available web-based learning tools (scaffolds) in a constructivist fashion.