Patient experiences with hidradenitis suppurativa: the Hidradenitis Patient Experience survey
Why this work is in the frame
A frame that forgets how it found something cannot be audited. These are the routes that admitted this work.
Bibliographic record
Abstract
BACKGROUND: Better understanding of the experience of people living with hidradenitis suppurativa (HS) is essential to identify gaps in current patient care and inform healthcare decision-making. AIM: To describe the patient experience of individuals with HS, including their path to diagnosis, symptom control, treatments, healthcare utilization, patient needs and impact on quality of life. METHODS: The Hidradenitis Suppurativa Patient Experience survey was created, extensively reviewed and disseminated through engaging HS-related patient organizations, physician groups and social media groups. RESULTS: In total, 537 respondents completed the survey; the mean age was 38 years (range 14-73 years) and 95% (510 of 537) were female. The mean number of treatment types per respondent was 15, and included antibacterial soaps (93.3%; 431 of 462), avoidance of tight clothing (90.9%; 419 of 462), use of oral antibiotics (79.7%; 368 of 462), nonprescription drugs (79.7%; 368 of 462) and topical antibiotics (77.1%; 356 of 262). Pain was poorly controlled in 46% of respondents (184 of 401). HS had a negative impact on the ability to work and attend school for 81% of respondents (337 of 415), with 59% (245 of 415) missing at least 2 days of work a month and 16% (66 of 415) missing > 11 days of work. The mean number of misdiagnoses per respondent was three and the median time to diagnosis was 10 years. CONCLUSION: Individuals with HS experience a delay in diagnosis and have suboptimal control of the disease. We propose 11 recommendations to improve diagnosis, treatment and quality of life for individuals living with HS.
Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.
Full frame distilled prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.
Codex and Gemma teacher scores by category
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.000 | 0.000 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.000 | 0.000 |
| Science and technology studies | 0.000 | 0.002 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.000 | 0.000 |
| Research integrity | 0.000 | 0.000 |
| Insufficient payload (model declined to judge) | 0.001 | 0.000 |
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 it