Objective
To support patient‐centred care and the collaboration of patients and clinicians, we developed and pilot tested a conversation aid for patients with thyroid nodules.
Design, Patient and Measurements
We developed a web‐based Thyroid NOdule Conversation aid (TNOC) following a human‐centred design. A proof of concept observational pre–post study was conducted (TNOC vs. usual care [UC]) to assess the impact of TNOC on the quality of conversations. Data sources included recordings of clinical visits, post‐encounter surveys and review of electronic health records. Summary statistics and group comparisons are reported.
Results
Sixty‐five patients were analysed (32 in the UC and 33 in the TNOC cohort). Most patients were women (89%) with a median age of 57 years and were incidentally found to have a thyroid nodule (62%). Most thyroid nodules were at low risk for thyroid cancer (71%) and the median size was 1.4 cm. At baseline, the groups were similar except for higher numeracy in the TNOC cohort. The use of TNOC was associated with increased involvement of patients in the decision‐making process, clinician satisfaction and discussion of relevant topics for decision making. In addition, decreased decisional conflict and fewer thyroid biopsies as the next management step were noted in the TNOC cohort. No differences in terms of knowledge transfer, length of consultation, thyroid cancer risk perception or concern for thyroid cancer diagnosis were found.
Conclusion
In this pilot observational study, using TNOC in clinical practice was feasible and seemed to help the collaboration of patients and clinicians.
Patient preferences for pharmacogenetic (PGx) counseling, testing and results dissemination are not well-established, especially in medically underserved Black and Latino populations. The aim of this study was to capture the preferences of Black and Latino patients who received PGx testing to ascertain: (1) factors enhancing their willingness to do testing and (2) preferences for the dissemination of results. Using the constant comparative method, we thematically analyzed interviews with 13 patients from medically underserved populations who had undergone PGx testing. The findings describe participants wanting better medication options, receiving a clear explanation about the testing, valuing or having an interest in science or medicine and having misconceptions about testing results as factors affecting one’s willingness to undergo PGx testing. Additionally, patients confirmed preferring receiving results of PGx testing in a sharable format and described the significance of discussing results in a clinical appointment. The findings provide insight into what Black and Latino patients may prefer in terms of clinical implementation of PGx testing. These results can be utilized for tailoring future implementation of PGx testing and informing best pre- and post-test patient counseling and education practices.
Chronic lymphocytic leukemia (CLL) caregivers play a central role in disease management—a role that has been heightened during the COVID-19 pandemic given the healthcare system’s reliance on frontline family caregivers and CLL patients’ increased risk of infection and mortality. Using a mixed-method design, we investigated the impact of the pandemic on CLL caregivers (Aim 1) and their perceived resource needs (Aim 2): 575 CLL caregivers responded to an online survey; 12 spousal CLL caregivers were interviewed. Two open-ended survey items were thematically analyzed and compared with interview findings. Aim 1 results showed that two years into the pandemic, CLL caregivers continue to struggle with coping with distress, living in isolation, and losing in-person care opportunities. Caregivers described experiencing increasing caregiving burden, realizing the vaccine may not work or didn’t work for their loved one with CLL, feeling cautiously hopeful about EVUSHELD, and dealing with unsupportive/skeptical individuals. Aim 2 results indicate that CLL caregivers needed reliable, ongoing information about COVID-19 risk, information about and access to vaccination, safety/precautionary measures, and monoclonal infusions. Findings illustrate ongoing challenges facing CLL caregivers and provide an agenda to better support the caregivers of this vulnerable population during the COVID-19 pandemic.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.