Remote Symptom Monitoring With Ecological Momentary Computerized Adaptive Testing: Pilot Cohort Study of a Platform for Frequent, Low-Burden, and Personalized Patient-Reported Outcome Measures.

BACKGROUND: Remote patient-reported outcome measure (PROM) data capture can provide useful insights into research and clinical practice and deeper insights can be gained by administering assessments more frequently, for example, in ecological momentary assessment. However, frequent data collection can be limited by the burden of multiple, lengthy questionnaires. This burden can be reduced with computerized adaptive testing (CAT) algorithms that select only the most relevant items from a PROM for an individual respondent. In this paper, we propose "ecological momentary computerized adaptive testing" (EMCAT): the use of CAT algorithms to reduce PROM response burden and facilitate high-frequency data capture via a smartphone app. We develop and pilot a smartphone app for performing EMCAT using a popular hand surgery PROM. OBJECTIVE: The aim of this study is to determine the feasibility of EMCAT as a system for remote PROM administration. METHODS: We built the EMCAT web app using Concerto, an open-source CAT platform maintained by the Psychometrics Centre, University of Cambridge, and hosted it on an Amazon Web Service cloud server. The platform is compatible with any questionnaire that has been parameterized with item response theory or Rasch measurement theory. For this study, the PROM we chose was the patient evaluation measure, which is commonly used in hand surgery. CAT algorithms were built using item response theory models derived from UK Hand Registry data. In the pilot study, we enrolled 40 patients with hand trauma or thumb-base arthritis, across 2 sites, between July 13, 2022, and September 14, 2022. We monitored their symptoms with the patient evaluation measure, via EMCAT, over a 12-week period. Patients were assessed thrice weekly, once daily, or thrice daily. We additionally administered full-length PROM assessments at 0, 6, and 12 weeks, and the User Engagement Scale at 12 weeks. RESULTS: The use of EMCAT significantly reduced the length of the PROM (median 2 vs 11 items) and the time taken to complete it (median 8.8 seconds vs 1 minute 14 seconds). Very similar scores were obtained when EMCAT was administered concurrently with the full-length PROM, with a mean error of <0.01 on a logit (z score) scale. The median response rate in the daily assessment group was 93%. The median perceived usability score of the User Engagement Scale was 4.0 (maximum possible score 5.0). CONCLUSIONS: EMCAT reduces the burden of PROM assessments, enabling acceptable high-frequency, remote PROM data capture. This has potential applications in both research and clinical practice. In research, EMCAT could be used to study temporal variations in symptom severity, for example, recovery trajectories after surgery. In clinical practice, EMCAT could be used to monitor patients remotely, prompting early intervention if a patient's symptom trajectory causes clinical concern. TRIAL REGISTRATION: ISRCTN 19841416; https://www.isrctn.com/ISRCTN19841416.

Implementation of an Online Glaucoma-Specific Quality of Life Computerized Adaptive Test System in a US Glaucoma Hospital.

PURPOSE: The feasibility of implementing a computerized adaptive test (CAT) system in routine clinical care in ophthalmology has not been assessed. We evaluated the implementation of a glaucoma-specific CAT (GlauCAT) in outpatients at Massachusetts Eye and Ear Institute. METHODS: In this implementation study (July 2020-April 2021), 216 adults (mean ± SD age 64.8 ± 15.3 years; 56.0% women) completed six adaptive GlauCAT quality of life (QOL) tests on an internet-enabled tablet at the clinic. A real-time printable report summarizing domain scores was shared with physicians prior to consultation. The implementation was evaluated using Proctor's outcomes: acceptability (patient satisfaction); appropriateness (independent complete rate [%]); feasibility (acceptance rate [%]; completion time); and fidelity (percentage of patients discussing GlauCAT results with their physician). Physician barriers/facilitators were explored using open-ended questions. RESULTS: Patients' mean ± SD satisfaction score was 3.5 ± 0.5 of 4, with >95% of patients willing to recommend it to others. Of the 216 (89.2%) patients accepting to participate, 173 (80%) completed GlauCAT independently. Patients took 8 minutes and 5 seconds (median) to complete all 6 GlauCAT tests. Almost two-thirds (n = 136/216) of the patients reported discussing their GlauCAT results with their doctor. Physicians described the GlauCAT summary report as helpful and user-friendly, although lack of time and uncertainty about how to action information were reported. CONCLUSIONS: Pilot implementation of six GlauCAT QOL tests in glaucoma outpatient clinics was feasible and acceptable. Integration of GlauCAT with electronic medical records (EMRs) and evaluation of long-term implementation outcomes are needed. TRANSLATIONAL RELEVANCE: GlauCAT's multiple outcomes and low test-taking burden makes it attractive for measuring glaucoma-specific QOL in routine clinical care.

Origins, admixture and founder lineages in European Roma.

The Roma, also known as 'Gypsies', represent the largest and the most widespread ethnic minority of Europe. There is increasing evidence, based on linguistic, anthropological and genetic data, to suggest that they originated from the Indian subcontinent, with subsequent bottlenecks and undetermined gene flow from/to hosting populations during their diaspora. Further support comes from the presence of Indian uniparentally inherited lineages, such as mitochondrial DNA M and Y-chromosome H haplogroups, in a significant number of Roma individuals. However, the limited resolution of most genetic studies so far, together with the restriction of the samples used, have prevented the detection of other non-Indian founder lineages that might have been present in the proto-Roma population. We performed a high-resolution study of the uniparental genomes of 753 Roma and 984 non-Roma hosting European individuals. Roma groups show lower genetic diversity and high heterogeneity compared with non-Roma samples as a result of lower effective population size and extensive drift, consistent with a series of bottlenecks during their diaspora. We found a set of founder lineages, present in the Roma and virtually absent in the non-Roma, for the maternal (H7, J1b3, J1c1, M18, M35b, M5a1, U3, and X2d) and paternal (I-P259, J-M92, and J-M67) genomes. This lineage classification allows us to identify extensive gene flow from non-Roma to Roma groups, whereas the opposite pattern, although not negligible, is substantially lower (up to 6.3%). Finally, the exact haplotype matching analysis of both uniparental lineages consistently points to a Northwestern origin of the proto-Roma population within the Indian subcontinent.

Facebook as a research tool for the social sciences: Opportunities, challenges, ethical considerations, and practical guidelines.

Facebook is rapidly gaining recognition as a powerful research tool for the social sciences. It constitutes a large and diverse pool of participants, who can be selectively recruited for both online and offline studies. Additionally, it facilitates data collection by storing detailed records of its users' demographic profiles, social interactions, and behaviors. With participants' consent, these data can be recorded retrospectively in a convenient, accurate, and inexpensive way. Based on our experience in designing, implementing, and maintaining multiple Facebook-based psychological studies that attracted over 10 million participants, we demonstrate how to recruit participants using Facebook, incentivize them effectively, and maximize their engagement. We also outline the most important opportunities and challenges associated with using Facebook for research, provide several practical guidelines on how to successfully implement studies on Facebook, and finally, discuss ethical considerations.