Bibliographic record
Abstract
PV178a / #270 Poster Topic: AS19 - Patient-Reported Outcome Measures Background/Purpose Systemic Lupus Erythematosus (SLE) is a complex autoimmune disease that can manifest in a variety of ways. This study aims to explore the personal journey of living with Systemic Lupus Erythematosus (SLE) from the perspective of an individual patient. By sharing personal experiences, the study seeks to increase awareness of the disease highlight the challenges faced by patients, and emphasize the importance of self-documentation in managing SLE. The project aims to bridge this gap by utilizing a unique approach: a visual diary. Over the past 4 years, the researcher, the journalist and film maker living with SLE, has meticulously documented their daily healthy journey through photographs and videos. The visual records capture the evolution of various SLE manifestations, including skin lesions, hair loss and other systemic symptoms. Significance: By sharing this visual narrative, the project seeks to: Increase public awareness of SLE: Visual story telling can effectively convey the complexities of the disease to broader audience, challenging misconceptions and fostering empathy. Enhance patient-physician communications: Visual documentation can aid in diagnosis, treatment planning, and disease monitoring and to emphasize the importance of patient perspectives in driving research and treatment development, particularly in relation to quality of life and patient-reported outcomes. Advance medical research: The dataset of visual records may contribute to a deeper understanding of disease progression and treatment response. Empower Patients: Sharing personal experiences can provide support and inspiration to others living with chronic illnesses. Ethical considerations: The project adheres to ethical guidelines for research involving human subjects. Methods The project involves a qualitative, autoethnographic approach. The researcher’s daily visual records serve as primary data sources. These visual data will be analyzed using thematic analysis to identify patterns and themes related to the disease’s impact on the individual’s physical and emotional well-being. Results The patients initial symptoms included localized itching and marking on the right leg and arm, which rapidly progressed to more severe manifestations. As the condition worsened, the patient experienced significant physical and emotional challenges, such as scalp sores, facial skin peeling, pain, fatigue, and mood disturbances. These symptoms significantly impacted the patient’s quality of life and ability to perform daily activities. Conclusions This multimedia project chronicles a 4-year journey with Systemic Lupus Erythematosus (SLE). By visual documenting the disease’s progression, from initial skin manifestations to systemic impacts, this work aims to raise awareness and understanding of SLE. The project underscores the importance of early diagnosis, timely intervention, and patient advocacy. Through a combination of photography and videography, it offers a unique perspective on the lived experience of SLE, challenging societal perceptions and inspiring hope for individuals facing similar challenges.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.007 | 0.018 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.001 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.004 | 0.003 |
| Scholarly communication | 0.006 | 0.004 |
| Open science | 0.001 | 0.007 |
| Research integrity | 0.001 | 0.003 |
| Insufficient payload (model declined to judge) | 0.017 | 0.003 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".