JMIR Formative Research

Personalized Support in Hereditary Breast and Ovarian Cancer After Genetic Counseling by the Chatbot-Based GENIE Mobile App: Proof-of-Concept Wizard of Oz Study

Abstract Background The primary aim of genetic counseling at a human genetics center is to empower individuals at risk for hereditary diseases to make informed decisions regarding their health. In Germany, genetic counseling sessions typically last approximately 1 hour and provide highly personalized information by a specialist in human genetics. Despite this, many counselees report a need for additional support following the counseling session. Objective This study introduces GENIE, a chatbot-based mobile app designed to assist individuals in the postcounseling phase, with a focus on hereditary breast and ovarian cancer. GENIE delivers expert-curated, personalized information tailored to the user’s health and family circumstances. The content is presented through predefined dialogs between the user and the mobile assistant, aiming to extend the benefits of genetic counseling beyond the initial session. Methods A Wizard of Oz study was conducted to evaluate a functional prototype of GENIE. A total of 6 patients with breast cancer, at least 2 years postdiagnosis, participated in the study. Participants were given access to the app for a minimum of 1 week. The evaluation was based on their interaction with GENIE, which was personalized using the details of a fictitious patient. Data collection included semistructured interviews and a 45-item questionnaire to assess usability and content quality. Results The analysis of the interview and questionnaire data indicated high usability for GENIE, with a mean System Usability Score of 75.33 (SD 4.13). In total, 5 of the 6 participants used the app daily; 3 participants were willing to pay between US $5 and US $45 as a single purchase, while the other 3 participants agreed that the app should be free for the user and the costs should be directly covered by health insurance. Still, opinions on the app’s appeal were divided. The layout was seen as moderately professional, a bit crowded, and slightly uninspiring. Nevertheless, participants highlighted the credibility and relevance of the content, noting its alignment with the fictitious patient’s scenario. However, areas for improvement were identified, particularly concerning the app’s design. All participants would recommend the app to other affected persons. Conclusions The findings suggest that a mobile app like GENIE can provide valuable support to individuals in the postcounseling phase of genetic services. GENIE offers distinct advantages over large language models, as the information it provides is carefully curated by human experts, minimizing the risk of inaccuracies or hallucinations and significantly enhancing the system’s credibility. This study highlights the need to involve the user group as early as possible in the development of a digital health app. Future work will focus on the implementation of a comprehensive personalization engine, redesign of the user interface, and the execution of a large-scale, 2-arm randomized intervention study to validate GENIE’s effectiveness.

Increasing the Uptake of Breast and Cervical Cancer Screening Via the MAwar Application: Stakeholder-Driven Web Application Development Study

Abstract Background Digital health interventions such as web health applications significantly enhance screening accessibility and uptake, particularly for individuals with low literacy and income levels. By involving stakeholders—including health care professionals, patients, and technical experts—an intervention can be tailored to effectively meet the users’ needs, ensuring contextual relevance for better acceptance and impact. Objective The aim of this study is to prioritize the content and user interface appropriate for developing a web health application, known as the MAwar app, to promote breast and cervical cancer screening. Methods A cross-sectional study for stakeholder engagement was conducted to develop a web-based application known as the MAwar app as part of a larger study entitled “The Effectiveness of an Interactive Web Application to Motivate and Raise Awareness on Early Detection of Breast and Cervical Cancers (The MAwar study)”. The stakeholder engagement process was conducted in a public health district that oversees 12 public primary care clinics with existing cervical and breast cancer screening programs. We purposively selected the stakeholders for their relevant roles in breast and cervical cancer screening (health care staff, patients, and public representatives), as well as expertise in software and user interface design (technology experts). The Quality Function Deployment method was used to reflect the priorities of diverse stakeholders (health care, technology experts, patients, and public representatives) in its design. The Quality Function Deployment method facilitated the translation of stakeholder perspectives into app features. Stakeholders rated features on a scale from 1 (least important) to 5 (most important), ensuring the app’s design resonated with user needs. The correlations between the “WHATs” (user requirements) and the “HOWs” (technical requirements) were scored using a 3-point ordinal scale, with 1 indicating weak correlation, 5 indicating medium correlation, and 9 indicating the strongest correlation. Results A total of 13 stakeholders participated in the study, including women who had either underwent or never had health screening, a health administrator, a primary care physician, medical officers, nurses, and software designers. Stakeholder evaluations highlighted cost-free access (mean 4.64, SD 0.81), comprehensive cancer information (mean 4.55, SD 0.69), detailed screening benefits (mean 4.45, SD 0.68), detailed screening facilities (mean 4.45, SD 0.68) and personalized risk calculator for breast and cervical cancers (mean 4.45, SD 0.68) as essential priorities of the app. The highest-ranked features include detailed information on screening procedures (weighted score [WS]=367.84), information on treatment options (WS=345.80), benefits of screening (WS=333.75), information about breast and cervical cancers (WS=332.15), and frequently asked questions about the concerns around screening (WS=312.00). Conclusions The MAwar app, conceived through a collaborative, stakeholder-driven process, represents a significant step in leveraging digital health solutions to tackle cancer screening disparities. By prioritizing accessibility, information quality, and clarity on benefits, the app promises to encourage early cancer detection and management for targeted communities.

Health Beliefs and Perspectives of Parents Regarding Human Papillomavirus Vaccination in Kuwait: Qualitative Study

Background After breast cancer, cervical cancer (CC) is one of the leading causes of female mortality. CC accounts for more than 7.5% of female cancer deaths worldwide. Human papillomavirus (HPV) is the most common sexually transmitted disease in women and the leading cause of CC in almost 99% of all CC cases. HPV vaccination could prevent up to 70% of HPV-related CC and 90% of genital warts. HPV vaccination is the bedrock of primary prevention and helps reduce the incidence and death rates of HPV-associated CC. Objective The study aimed to understand the knowledge, health beliefs, and perspectives of Kuwaiti parents regarding HPV vaccination, with the goal of developing a health promotion policy and introducing a national immunization program in Kuwait. Methods A total of 37 participants were evaluated using purposive sampling to select 20 (54%) participants for one-on-one semistructured interviews. We wanted to include both participants (male and female parents) with primary education (diploma or below) or secondary and higher education (bachelor’s degree and above). We had four categories (male parents/guardians with a diploma or below, male parents/guardians with a bachelor’s degree or above, female parents/guardians with a diploma or below, and female parents/guardians with a bachelor’s degree or above) with at least 5 participants in each category, which gave us 20 participants. Semistructured interviews were based on the Health Belief Model (HBM). The data were thematically analyzed using an inductive approach, generating themes through the theoretical framework of the HBM, and theme extraction analyses were managed on a semantic level. Results We identified 7 main themes containing 20 subthemes. The seven themes were (1) knowledge and awareness about HPV infection and vaccination (3 subthemes); (2) perceived susceptibility, which is explained by the HPV infection effect based on sex (2 subthemes); (3) perceived barriers to HPV vaccination (8 subthemes); (4) perceived benefits (1 subtheme); (5) perceived severity (2 subthemes); (6) perceived efficacy (2 subthemes); and (7) cues to action (2 subthemes). Conclusions The HBM framework is beneficial for Kuwait’s HPV vaccination campaign. The correlation between sexual intercourse and the HPV vaccine frequently adds complexity to the decision-making process about immunization. This study demonstrates that positive cues to action from health care practitioners and educational vaccination benefits can overcome perceived barriers among parents related to stigma and religion. It is essential to conduct more such research to guide the development of interventions aimed at promoting adoption of the HPV vaccine.

A Sexual Health Self-Management Intervention (Psychosexual Educational Partners Program) for Couples With a History of Breast and Gynecological Cancer: Mixed Methods Feasibility Study

Background Women with breast or gynecological cancer and their intimate partners often face sexual problems in their relationships. Accessing care for sexual health problems is challenging for several reasons (eg, limited trained health care providers and privacy concerns), making self-management approaches highly promising. Objective This study assessed the feasibility of the Psychosexual Educational Partners Program (PEPP), a 6-week sexual health self-management intervention for women treated for breast or gynecological cancer and their intimate partners. Methods A mixed methods single-arm, repeated measures design was used for this study. An attrition rate of ≤25% was considered feasible. Intervention experiences were assessed via interviews, and preliminary effects on the Dyadic Sexual Communication Scale, relationship quality measured by the Revised Dyadic Adjustment Scale, and sexual health measured by PROMIS Sexual Function and Satisfaction version 2.0 were explored quantitatively. Results In total, 7 (77%) of the 9 couples completed the study through week 6 and provided both pre- and poststudy data, resulting in an attrition rate of 22% (2/9), which met the feasibility benchmark for attrition of 25% or less. The following two themes emerged: (1) PEPP helped us start difficult conversations and impacted emotional and physical intimacy. The intervention adherence was 85%. Dyadic Sexual Communication Scale scores improved with a mean change score of 6.64 (SD 9.65) and a Cohen d of 0.69. Revised Dyadic Adjustment Scale scores declined slightly, with a mean change score of –0.93 (SD 3.41) and a Cohen d of 0.27. PROMIS Sexual Function and Satisfaction version 2.0 scores showed small improvements for women on desire, with a mean change score of 2.36 (SD 6.24) and a Cohen d of 0.38. Similarly, for women, the satisfaction mean change score was 2.20 (SD 8.22) and a Cohen d of 0.27. For intimate partners, a small effect was found for desire, but in this instance, desire decreased with a mean change score of –1.57 (SD 6.09) and a Cohen d of 0.26. Conclusions The findings support PEPP as a feasible intervention for improving sexual communication. If proven effective in a randomized controlled trial, it has the potential to address the critical gap in supportive care among female cancer survivors. Trial Registration ClinicalTrials.gov NCT05070299; https://clinicaltrials.gov/study/NCT05070299