2025-09-29
M. Cecilia Bahit et al.
Purpose: Myocardial infarction (MI) remains to be associated with a high risk of recurrent cardiovascular events and disease burden. This study assessed patient perspectives on the burden of disease and treatment in the first year post-MI. Methods: Data were collected via a self-administered online questionnaire posted on the Carenity patient platform in the United States (10/30/2022−12/30/2022). Only patients who had an MI in the prior year were eligible for inclusion. Results: A total of 151 patients completed the survey. The majority were men (69%), median age was 50 years, and 38% had an MI within the previous 90 days. Overall, post-MI complications were reported in 44% of the patients, including depression (23%), recurrent MI (7%), and stroke (7%). Follow-up care was provided by general/clinical cardiologists (67%), interventional cardiologists (38%), and general healthcare providers (59%). Most patients (80%) reported involvement in treatment decisions. The number of prescribed medications was considered the main contributor to post-MI treatment burden; approximately 42% of the patients found it tedious remembering to take their medications. The most commonly quoted post-MI treatment goal was recurrent MI risk reduction. Additionally, 73% of the patients considered improving quality of life to be a key goal. Overall, the patients’ emotional well-being, physical well-being, and personal life were particularly impacted by MI. “Stress/anxiety/fear” was the most frequently reported emotion immediately post-MI, and one-third conveyed MI’s negative impact on their employment status. MI impacted household finances in 74% of patients, with 38% losing income. Conclusions: MI places a substantial burden on patients. Understanding patient experiences post-MI may enhance patient-centered care.
2025-09-29
Marike de Reuver-Schuurman et al.
Purpose: To gain insight into the self-management and support needs of patients experiencing persistent symptoms consistent with hypothyroidism, despite thyroid laboratory values within the normal range. Methods: A qualitative study using the phenomenological approach was conducted. Semi-structured interviews including 19 patients diagnosed with persistent symptoms consistent with hypothyroidism, despite receiving adequate replacement therapy, were performed. Respondents were recruited using purposive sampling via Schildklier Organisatie Nederland (Dutch Thyroid Organization) (www.schildklier.nl). After transcription and coding, a thematic analysis was performed. Results: All respondents reported that the persistent symptoms reduced their quality of life. The patients’ main focus was on finding the cause of these symptoms and balancing activities in their personal, social, and professional lives. The most frequently mentioned support need was for physicians to pay more attention to patients’ symptoms. Respondents expected that this would mainly improve their mental quality of life. Conclusions: Giving greater attention to persistent symptoms consistent with hypothyroidism in medical guidelines and (continuing) education might make general practitioners and internists more aware of these symptoms. This might help them better understand the impact of the persistent symptoms on quality of life and the support needs of patients, thereby improving the conversation between patients and physicians. This may reduce the perceived gap between patients’ needs and what physicians (are able to) provide, which might support self-management of these persistent symptoms.
2025-09-29
Hari Mudipalli et al.
This editorial provides an overview of large language models (LLMs), the risks associated with their use, and the challenges involved in using artificial intelligence (AI) to determine the extent to which LLMs have been used to write text, including articles for publication in medical journals. As narratives generated by LLMs become increasingly difficult to distinguish from human writing, concerns have emerged about their impact on scholarly communication, particularly in health and medicine. The medical community is becoming more aware of various tools that can detect AI-generated text; however, adopting these tools comes with unique challenges. The purpose of this article is to provide readers with an understanding of how AI text detectors work, the limitations of these tools, and recommendations for what medical editors, reviewers, and readers can do to navigate these challenges, along with future directions to help safeguard the integrity of scholarly work.
2025-07-14
Health Care Systems Research Network
The Health Care Systems Research Network (HCSRN) comprises 19 learning health systems with integrated care delivery and embedded research units. The network’s annual conference serves as a forum for research teams from member institutions to disseminate project findings, explore scientific collaborations, and share insights about population-based research practices that can measurably improve health and health care for all. The theme of this year’s conference was “Optimizing Collaborations to Advance Health in a Dynamic Research Landscape.” Abstracts presented at HCSRN 2025 are published in this issue supplement of the Journal of Patient-Centered Research and Reviews , the journal of record for HCSRN’s annual conference proceedings.
2025-07-14
Megan J. Moran et al.
Purpose: Involving community members in the process of translating scientific evidence into health messaging and interventions can lead to improved health outcomes and more patient-centered healthcare. Community Translation (CT) is one methodology for fostering collaboration between researchers and community members, and it has been shown to result in locally relevant, acceptable solutions to health challenges. There has been very little research on the direct effects that participation may have on community members who become involved in CT. Understanding the mechanisms of CT and its outcomes on participating community members is essential to maximizing the potential of CT. To address this gap, the present study explores processes theorized to be important to the effectiveness of CT. Methods: Utilizing self-report survey and brief open response data from community partners (N = 8) involved in a CT to adapt a family-inclusive lifestyle intervention in the rural Mountain West, we sought to describe change in theorized mechanisms – knowledge, attitudes, and partnership dynamics – and intermediate effectiveness outcomes. Results: The results indicate that perceived knowledge, attitudes, partnership dynamics, and intermediate effectiveness outcomes all tended to increase across the CT, with intermediate effectiveness outcomes such as group impact, perceived benefits, belonging, and cultural relevance showing the largest changes. Conclusions: The findings provide preliminary support for the logic model and theoretical basis outlined by the developers of CT, as well as insights for ways to optimize this powerful community-based participatory research methodology.
2025-07-14
David M. Thompson
Clinicians routinely interpret statistical findings from medical research to inform patients of treatment benefits. Studies that use the hazard ratio present special challenges. Clinicians should not equate hazard ratios with risk ratios, ie, relative risks. However, clinicians can provide patients with a straightforward interpretation of the hazard ratio as an odds, as long as the ratio was calculated in a study in which the assumption of proportional hazards is justified. In such a case, the hazard ratio is equivalent to the odds that a person, who is randomly chosen from the group represented in the ratio’s numerator, experiences an event before a randomly chosen person from the group represented in the ratio’s denominator. A mathematical derivation for the equivalence is provided to further clarify this idea for clinicians.
2025-04-21
Sara Santarossa et al.
As part of a Patient-Centered Outcomes Research Institute Eugene Washington Engagement Award aimed at improving capacity to address maternal mental health in research, this collection of stories describes experiences from six unique patient perspectives. Using motherhood as a common thread, these six stories weave together the patients’ challenges and barriers juxtaposed with their hopes and dreams. Exploring such topics as infant loss, expectations versus the reality of the postpartum experience, grief, loss of identity, loss of physical or emotional safety, advocacy, and perseverance through challenging maternal mental health experiences, these tales of resiliency leverage the voices and lived experiences of patients in a powerful, reflective manner.