Comparison of evaluation methods for improving the usability of a Spanish mHealth tool.

OBJECTIVE: Mobile health (mHealth) technology is now widely used across health conditions and populations. The rigorous development of these tools has yielded improved health outcomes, yet the ideal approach for developing mHealth tools continues to evolve, indicating the need for rigorous usability evaluation methods. This study compares two usability evaluation methods - cognitive interviews and usability assessments employing a think-aloud approach - for adapting an evidence-based mHealth tool from English into Spanish. METHODS: We conducted cognitive interviews and usability assessments using a think-aloud protocol to evaluate the usability of an HIV mHealth application among 40 Spanish-speaking adults with HIV in New York City, NY, and La Romana, Dominican Republic. The Health IT Usability Evaluation Model (Health-ITUEM) was used to guide the analysis of qualitative data collected from each method. RESULTS: Participants (N = 40) averaged 43 years old (SD = 12.26; range 20-79), identified primarily Hispanic/Latino (92.5 %), and resided in La Romana (50 %) or New York City (50 %). Both usability evaluation methods yielded similar findings, highlighting learnability and information needs as crucial components of participant feedback for the mHealth application. Cognitive interviews captured participants' perspectives on the app's interface and design. On the other hand, results from usability assessments offered insights into participants' competency while interacting with the mHealth tool. CONCLUSION: Findings from this study highlight the contributions and limitations of including cognitive interviews and task-based usability assessments using a think-aloud approach in mHealth usability testing. Future research should employ a multi-method approach, incorporating complementary usability evaluation methods and engaging participants in multiple assessments. Using complementary usability evaluation methods may provide a more comprehensive understanding of the usability and participant experience aspects of a mHealth tool compared to using a single usability evaluation method.

"Looking at future cancer survivors, give them a roadmap": addressing fertility and family-building topics in post-treatment cancer survivorship care.

PURPOSE: Fertility is an important issue among adolescent and young adult female (AYA-F) cancer survivors. This study examined AYA-F survivors' unmet needs and recommendations for care to address fertility/family-building in post-treatment survivorship. METHODS: Semi-structured interviews (45-60 min) explored themes related to fertility and family-building after cancer. Coding categories were derived based on grounded theory methods. Themes were identified through an iterative process of coding and review. RESULTS: Participants (N = 25) averaged 29 years old (SD = 6.2; range, 15-39) were primarily White and well educated, and averaged 5.81 years post-treatment (SD = 5.43); 32% had undergone fertility preservation (pre- or post-cancer). Six recommendations for improving care were identified: addressing patient-provider communication, need to provide informational, emotional, and peer support, financial information, and decision-making support. AYA-Fs believed the best way to learn about resources was through online platforms or doctor-initiated discussions. Telehealth options and digital resources were generally considered acceptable. Face-to-face interactions were preferred for in-depth information, when AYA-Fs anticipated having immediate questions or distressing emotions, and with concerns about Internet security. Thus, a combined approach was preferred such that information (via web-based communication) should be provided first, with follow-up in-person visits and referrals when needed. CONCLUSION: Informational and support services are needed to better educate patients about gonadotoxic effects and options to have children after cancer treatment is completed. Future work should evaluate how to best support oncology providers in meeting the needs of survivors concerned about fertility and family-building including referral to clinical specialties and supportive resources.

Toward a theoretical understanding of young female cancer survivors' decision-making about family-building post-treatment.

PURPOSE: Family-building after gonadotoxic treatment often requires in vitro fertilization, surrogacy, or adoption, with associated challenges such as uncertain likelihood of success, high costs, and complicated laws regulating surrogacy and adoption. This study examined adolescent and young adult female (AYA-F) survivors' experiences and decision-making related to family-building after cancer. METHODS: Semi-structured interviews explored fertility and family-building themes (N = 25). Based on an a priori conceptual model, hypothesis coding and grounded theory coding methods guided qualitative analysis. RESULTS: Participants averaged 29 years old (SD = 6.2) were mostly White and educated. Four major themes were identified: sources of uncertainty, cognitive and emotional reactions, coping behaviors, and decision-making. Uncertainty stemmed from medical, personal, social, and financial factors, which led to cognitive, emotional, and behavioral reactions to reduce distress, renegotiate identity, adjust expectations, and consider "next steps" toward family-building goals. Most AYA-Fs were unaware of their fertility status, felt uninformed about family-building options, and worried about expected challenges. Despite feeling that "action" was needed, many were stalled in decision-making to evaluate fertility or address information needs; postponement and avoidance were common. Younger AYA-Fs tended to be less concerned. CONCLUSION: AYA-Fs reported considerable uncertainty, distress, and unmet needs surrounding family-building decisions post-treatment. Support services are needed to better educate patients and provide opportunity for referral and early preparation for potential challenges. Reproductive counseling should occur throughout survivorship care to address medical, psychosocial, and financial difficulties, allow time for informed decision-making, and the opportunity to prepare for barriers such as high costs.

Recruitment via social media: advantages and potential biases.

BACKGROUND: Adolescent and young adult (AYA) cancer survivors are under-represented in research. Social media is increasingly used for recruitment given its ability to reach large audiences. Differences in participant characteristics and potential biases due to recruitment source are not well understood. PURPOSE: This study aimed to: (a) compare recruitment strategies (hospital-based v. social media) in enrollment metrics, and (b) among enrolled participants, evaluate group differences in patient characteristics and patient reported outcomes (PROs). METHODS: Preliminary data from a cancer and fertility study with female AYAs were evaluated. Hospital-based recruitment used electronic medical records (EMR) to identify eligible patients. Social media recruitment involved posting on partner organizations' social media outlets. PROs included validated measures related to the parent study. Descriptive statistics evaluated recruitment metrics. Independent samples t-tests and chi-square identified differences in participant characteristics and PROs based on recruitment. RESULTS: Social media yielded a higher enrollment rate (37%; n = 54/146) compared with hospital-based recruitment (7%; n = 21/289) and required fewer study resources. Compared with hospital-based recruitment, participants from social media were more likely to be White (p = 0.01), with a longer time since treatment (p = 0.03); and reported higher levels of reproductive concern (p = 0.004) and negative mood (p = 0.02), and more negative illness perceptions (ps < 0.05). CONCLUSION: Recruitment via social media may be a more effective and efficient strategy compared with hospital-based methods. However, group differences were identified that could bias findings and limit generalizability. Advantages of social media should be considered with an understanding of how methodology may impact enrollment and results.